Public Authorities (Fraud, Error and Recovery) Bill (First sitting)
Tuesday 25th February 2025
(1 day, 17 hours ago)
Public Bill CommitteesPublic Authorities (Fraud, Error and Recovery) Bill 2024-26 View all Public Authorities (Fraud, Error and Recovery) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Chair
We are now in public session and proceedings are being broadcast. Before I begin, I remind Members to switch their electronic devices off or to silent. Tea and coffee are forbidden. Date Time Witness Tuesday 25 February Until no later than 10.10 am Professor Mark Button, University of Portsmouth; Dr Rasha Kassem, Aston University; Professor Michael Levi, Cardiff University Tuesday 25 February Until no later than 10.30 am Cifas Tuesday 25 February Until no later than 11.00 am Kristin Jones; NHS Counter Fraud Authority Tuesday 25 February Until no later than 11.25 am Money and Pensions Service Tuesday 25 February Until no later than 2.30 pm National Audit Office; HM Revenue & Customs Tuesday 25 February Until no later than 2.50 pm John Smart Tuesday 25 February Until no later than 3.10 pm UK Finance Tuesday 25 February Until no later than 3.30 pm JUSTICE Tuesday 25 February Until no later than 3.50 pm Public Sector Fraud Authority Tuesday 25 February Until no later than 4.10 pm Big Brother Watch Tuesday 25 February Until no later than 4.40 pm Campaign for Disability Justice; Greater Manchester Coalition of Disabled People Tuesday 25 February Until no later than 5.00 pm Department for Work and Pensions; Cabinet Office
We have three motions to consider: the programme motion on the amendment paper; a motion to enable the reporting of written evidence for publication; and a motion to allow us to deliberate in private. In view of the tight timetable, hon. Members may wish to take those motions formally, without debate.
The Minister will move the programme motion standing in his name, which was discussed by the Programming Sub-Committee yesterday.
Ordered,
That—
1. the Committee shall (in addition to its first meeting at 9.25 am on Tuesday 25 February) meet—
(a) at 2.00 pm on Tuesday 25 February;
(b) at 11.30 am and 2.00 pm on Thursday 27 February;
(c) at 9.25 am and 2.00 pm on Tuesday 4 March;
(d) at 11.30 am and 2.00 pm on Thursday 6 March;
(e) at 9.25 am and 2.00 pm on Tuesday 11 March;
(f) at 11.30 am and 2.00 pm on Thursday 13 March;
(g) at 9.25 am and 2.00 pm on Tuesday 18 March;
(h) at 11.30 am and 2.00 pm on Thursday 20 March;
2. the Committee shall hear oral evidence in accordance with the following Table:
3. proceedings on consideration of the Bill in Committee shall be taken in the following order: Clauses 1 to 7; Schedule 1; Clauses 8 to 69; Schedule 2; Clauses 70 to 74; Schedule 3; Clauses 75 to 77; Schedule 4; Clauses 78 to 90; Schedule 5; Clause 91; Schedule 6; Clauses 92 to 98; new Clauses; new Schedules; Clauses 99 to 104; remaining proceedings on the Bill;
4. the proceedings shall (so far as not previously concluded) be brought to a conclusion at 5.00 pm on Thursday 20 March.—(Andrew Western.)
Resolved,
That, subject to the discretion of the Chair, any written evidence received by the Committee shall be reported to the House for publication.—(Andrew Western.)
Resolved,
That, at this and any subsequent meeting at which oral evidence is to be heard, the Committee shall sit in private until the witnesses are admitted.—(Andrew Western.)
The Chair
We are now in public session and proceedings are being broadcast. Before we hear from the witnesses, do any hon. Members wish to declare interests that are pertinent to the Bill?
Michael Payne (Gedling) (Lab)
I would like to declare an interest as a member of both Nottinghamshire county council and Gedling borough council, which are both responsible for administering benefits.
Michelle Welsh (Sherwood Forest) (Lab)
Mine is exactly the same: I am a member of Gedling borough council and Nottinghamshire county council, which have responsibility for administering benefits.
Rebecca Smith (South West Devon) (Con)
In the same vein, I am a member of Plymouth city council.
Neil Coyle (Bermondsey and Old Southwark) (Lab)
I am a trustee/director of Southwark Charities, which provides accommodation for some older people who may be affected by the provisions of the Bill—a cursory reference, really.
Examination of Witnesses
Professor Mark Button, Dr Rasha Kassem and Professor Michael Levi gave evidence.
The Chair
Q
Professor Button: Good morning, everybody. My name is Professor Mark Button. I am co-director of the Centre for Cybercrime and Economic Crime at the University of Portsmouth and I have been researching fraud-related issues for nearly 20 years.
Dr Kassem: Good morning, everyone. I am Dr Rasha Kassem, senior lecturer and leader of the fraud research group at Aston University. Like Mark, but probably for fewer years, I have been researching all aspects of fraud.
Professor Levi: I am Michael Levi. I am professor of criminology at Cardiff University and I have been researching fraud for 53 years, so I think I win on that score, although that may mean I am very out of date.
Mike Wood (Kingswinford and South Staffordshire) (Con)
Q
I will start by asking the panel a reasonably general question. What, in your experience, are the main limiting factors in investigating public sector fraud?
Professor Button: There is a number of factors. Obviously, the first challenge with dealing with social security fraud and a lot of the rest of public sector fraud is that you have no choice but to deal with those people. It is not like a bank or a private company, which have the opportunity to decide whether to do business with that particular person. In the case of someone making a claim for a benefit, the public sector body has to deal with that person.
You are obviously dealing with increasingly highly organised fraudsters that often operate across borders. That poses significant challenges, particularly for many public sector fraud agencies, particularly when the police themselves have very limited resources. Fewer than 2,000 officers are dedicated to economic crime. They simply do not have the time to help public sector bodies deal with these things. When you look at those particular challenges, having professional capacity within government to investigate fraud with the appropriate powers is a sound basis for dealing with these problems.
Dr Kassem: The capabilities and skills of public authority staff would be a main challenge for me. Do they have the same understanding about what fraud means, its impact, the methodologies and typologies of fraud and the limitations of each type? I ask that because when you talk about fraud, you are talking about fraud committed against the public sector by individuals as well as organisations. The procedures cannot be the same in each case, and the motivations and the resources will not be the same in each case, so they have to have this understanding.
Equally, there has to be an understanding about the differentiation between fraud and error; the element of intent to deceive is the main differentiating factor. Do we have criteria that tell staff in the public sector how to differentiate between fraud and error? Is that agreed upon criteria to ensure that errors are not happening? Are they trained and do they have the proper skills to enable them to investigate without accusing, for example, innocent people and impacting adversely vulnerable individuals? That would be the main challenge, in my view.
Professor Levi: I have one final, quick point, because I know that there are a lot of questions. At one extreme, there is the point that Mark made about organised crime groups and so on, but it is a question of identifying when something is an organised crime activity, which you can only do easily either by getting intelligence or by correlating claimants’ data to build up a pattern, as in covid-19 fraud schemes. At the other extreme, there is what is probably the majority—failure to notify a change in circumstance. This has always been the most common part of the area covered by the Department for Work and Pensions. As far as the Public Sector Fraud Authority goes, I think it is a question of identifying a lot of internal cases from people that you would not ordinarily suspect.
Mike Wood
Q
Professor Button: One of the key things is always resources. If you look at the size of the PSFA at the moment, in terms of the scale of fraud, and look at some of its estimates, you see that this is substantially more than the estimates of fraud in the DWP, so having a relatively small unit, as proposed, is, I think, a limitation. For me, the key thing is having the appropriate resources within that unit to have a real impact on fraud. That question, “Is there enough there at the moment?”, is a key one.
Dr Kassem: Although I believe that this is a very positive step and definitely will enhance accountability, several things need to be considered. To start with, the definition of fraud can be a bit limiting in the current Bill, because, first, it assumes that fraud is happening for financial reasons when that is not necessarily the case. There are non-financial motives. Let us consider insider fraud—fraud committed by insiders, people working for the public authorities—which is one of the most common threats not just in the public sector, but across other sectors. A disgruntled employee can be as dangerous as someone with a financial motive. So I would stick with the Fraud Act 2006 definition of fraud, because it mentions personal gain full stop. It can be financial and it can be non-financial. That has to be clarified.
There is also the difference between fraud and error. I know that intent is mentioned—rightly so—as the main differentiating factor between fraud and error. Again, however, we have to be very clear about the criteria that would enable public sector staff to differentiate between fraud and error, because you do not want them to make mistakes and accuse innocent individuals of committing fraud, just like what happened in the Post aOffice scandal. That would cause further reputational damage to the Public Sector Fraud Authority and the public sector in general, so they have to be very careful about the criteria, which have to be agreed upon.
This is the second area that I want to talk about: because there is a difference between fraud and error, the recovery and the procedures, in terms of perpetrators committing fraud versus those committing an error, need to be clarified in the Bill. I do not think that that is clear enough at the moment.
The third point is about understanding the very nature of fraud—the fact that fraud can be committed by individuals and organisations. The policies and procedures that will be followed when you deal with fraud committed by individuals should not be the same as those that are followed when you deal with organisations. For example, if you were to take preventive measures, the procedures would be different for organisations versus individuals. With organisations, you are talking about controls, compliance measures and so on. That has to be clarified in the Bill—how fraud committed by organisations will be dealt with versus fraud committed by individuals.
Lastly, I would like to raise the possibility of abuse of power. Again, although the PSFA has greater intentions of preventing fraud, you want it to appear to the public that there is less risk of abuse of position. The oversight board will be very important there as an independent body, and perhaps it could be a board independent from the PSFA staff who oversee the work. For this to work, there have to be proper governance structures, including independent board members who have proper fraud expertise and understand the limitations and the mission of the public authorities. It will be very important for public authorities to report on their operational performance to enable that independent board to oversee properly.
Professor Levi: I do not quite agree with all those comments. Some of those measures do not need to be in the Bill, but they obviously need to be part of the structure. The Bill will hopefully last for a long time, and I am sure that you are all familiar with changes.
I think the point about the resource is important, but you also need to allow time for bedding in. There is the issue of where they will recruit staff from, and how experienced they are in actually dealing with stuff. I remember the Assets Recovery Agency, which was a stand-alone body. It was closed down because it did not recover as much as it cost at that time, as there were so many appeals. This is not quite analogous with that agency, but one needs to remember that it takes years to develop skills in actually handling cases. I do not think that is so much a question of the limitations of the Bill but a warning about not expecting too rapid results. Obviously, the practitioners and policymakers may offer a different view from mine, but I think it takes quite a long time. When I reviewed the Serious Fraud Office for the royal commission in 1992, I saw that gaining expertise in actually dealing with stuff takes quite a while, and some would argue that it has not yet done that.
Mike Wood
Q
Professor Button: With any kind of initiative like this, you will always get a degree of displacement. The clever fraudsters will find new means to get around the rules. Obviously, a lot of these measures are directed at the more opportunistic individuals who are not as well organised and probably do not invest as much time in looking for means to get around some of those measures. For that client group of offenders, the Bill will be quite effective. However, for the more organised offenders, particularly the more organised crime elements, they will find ways to get around some of these measures.
Professor Levi: I am not clear about the provisions for international linkages in the Bill. Perhaps that is something that just needs to be sorted out afterwards, but people need to be able to chase money overseas. The question about who does that, and what they need to do before they are able to do that, is pretty important. This is not so much in covid-19 frauds, because that has already happened, but a lot of these things are time critical. The asset-freezing orders that were granted to the police in 2017 have proven very effective, so we need to think about what processes there are for dealing with stuff rapidly.
Dr Kassem: I have one final point. I raised the issue of differentiating between fraud committed by individuals and by organisations. I think that needs to be sorted in the Bill, not afterwards. For example, from a governance perspective, the Bill says that you can access banks accounts and freeze assets, but whose? Are you going to take the assets from the organisation, the directors running the organisation or the fraud perpetrators inside the organisation? This has to be sorted, because you will face another issue, at least in courts, about who is the controlling mind in the organisation. The organisation has a mind of its own legally, and therefore cannot be treated in the same way as when you deal directly with individuals. If that is sorted, there will hopefully be a higher probability of recovery and fewer loopholes in the Bill.
Professor Levi: There is also the question of legal aid for those suspected or accused who have to take some measures to appeal. I was not clear about that, although it may be my fault.
Neil Coyle
Q
Professor Levi: I am not sure that it needs to be in the Bill. Definitions of what we mean by “organised” are typically vague. An act committed by three or more people for the pursuit of profit is a very low bar for organised crime. A fraud by one person can be perfectly well organised, but they are not part of an organised crime group. In policing, we talk about organised crime activity and people normally think about organised crime groups. That is a definitional problem that may be too much for the Bill in its present form, and indeed for Governments. They certainly need to think about what conditions apply to which people, and I am sure they have. I am not sure whether that constraint needs to be in the Bill, but Dr Rasha may have a different view.
Dr Kassem: For me, when I talk about fraud committed by organisations, it does not have to be organised crime. It could be a legitimate organisation defrauding the public sector. Again, the Bill mentions things around recovery, such as accessing bank accounts and seizing assets—how would they apply in cases of organisation versus individual? That needs to be thought about carefully in the Bill. Again, when you think about the nature of fraud and who is committing it, you are talking about different powers and different motives for individuals versus organisations. There are different assets and different ways of recovery. They are not the same, and therefore that has to be clarified in the Bill.
Neil Coyle
Q
Dr Kassem: It depends on whether they have knowingly done that, because the differentiating factor between fraud and error is the intent.
Neil Coyle
Q
Dr Kassem: Yes, in terms of the intent, because errors could happen. The differentiating factor between fraud and error is the intent to deceive. The example you mentioned could be error or fraud, depending on the intent to deceive. There must be clear criteria in the Bill to at least guide staff in the public sector to differentiate between fraud and error.
Neil Coyle
Q
Dr Kassem: It could be, yes.
Professor Levi: I agree.
Neil Coyle
So does that distinction need to be in there—that there needs to be the flexibility to treat this on an individual basis?
Professor Button: I was just going to say that my son recently reached 18 and went to university, and my wife received a letter saying something like, “Unless you have these circumstances, you have to positively say that they are staying on in further education.”, so there would be a clear misrepresentation there, I think. There would not be any opportunity for an error in that particular example, based on my experience with my son.
Neil Coyle
But what if the 18-year-old went into work? The point is that the onus is on the individual to make clear the change in circumstances to the Department, but the Department also has the opportunity to question. In your case, you are showing that the Department has done that.
Professor Button: They sent a letter, and you had to fill in a form to say that your son was staying on in further education in order to continue receiving payments.
Professor Levi: Yes, to reduce the fudge. It is sometimes difficult to see how there can be a legitimate explanation in the case that you are rightly using, but there must be a possibility of arguing. I am not sure myself that that needs to be in the Bill—that is a matter of criminal law, which the Bill does not seek to change in this case—but, in most departmental behaviour, they will adjust. Mark’s son’s case is a perfect example; the Department has clarified so that, if the family had continued claiming under those circumstances, it would be clear that they had committed an offence.
Neil Coyle
Q
Professor Levi: I am enthusiastic about the extension of the 12-year limitations; I think that is very sensible, particularly in view of the length of time that has elapsed since covid-19. But I am not sure how you would insert something in the Bill that would enable it to be varied. Presumably Parliament would like to see those proposals before they are approved, but there is an issue about parliamentary time—or it could be done through supplemental issues.
But I think it is right. Very few people can envisage the future. Look at the impact of technologies in our time. People will find ways of getting around things that you have not thought of yet, so that is pretty normal.
The Parliamentary Under-Secretary of State for Work and Pensions (Andrew Western)
Q
Dr Kassem: There are lots of definitions talking about fraud, including lies, cheating and misrepresentation for personal gain, but my point is that personal gain can be financial or non-financial. The Bill specifically mentions financial gain, but what would you do if you had a staff member working for a public authority who, for example, allowed unauthorised access or shared information out of revenge? There is no financial gain in that case. Would you treat that as fraud?
Andrew Western
Q
Dr Kassem: Yes, I have seen that in the literature, but not in practice yet. I think the way to go forward with that is by education and raising awareness about fraud and its impact, because those individuals committing fraud do not see the harm there. They see the Government as having lots of money in a rich country. They see themselves as entitled as well—more than others—and they take their fair share, or they might do it out of revenge, ideology or coercion, perhaps. There are lots of motivations for them to do that. Educating them about why this is wrong and what would be the consequences of committing fraud can help to reduce fraud over the long term and raise awareness about it. Equally important is training staff in public authorities about fraud, what it means and how to detect it. Prevention is better than a cure. Again, those have to go hand in hand. Yes, there has to be an investigation and a deterrent to discourage people from doing it, and this Bill is an excellent step in doing so.
However, if you produce the Bill, with untrained staff members who are not able to identify fraud criminals individually or organisationally, it will not really work. Preventing fraud requires a holistic approach. You cannot focus on prevention alone or on enhancing accountability alone, or on deterrence or investigation. Everything needs to work together, and education plays an important part internally in public sectors and externally across the public.
Professor Button: I have recently done some research where we replicated a study from 10 years ago. We sought a representative sample of the population and their attitudes to various deviant behaviours, including benefits fraud, and we found there was a significant decline in honesty. I think there are changes that are particularly pronounced among younger people. It has been driven by a whole range of factors, not least it is much easier to be dishonest now. If you go back 20 or 30 years, if you wanted to apply for a loan or a credit card you had to go to a bank. Now you just do it online on a computer. It is much easier to engage in dishonest behaviours in those types of ways.
The other thing is that social media and different types of forums provide opportunities for people to discuss how to engage in dishonest behaviour. I am doing some research at the moment about online refund fraud. We have been going into forums where a wide range of individuals discuss how to defraud retailers and get refunds for stuff that they have bought online. I strongly suspect that that kind of thing is probably also going on for benefits fraud. All of those factors are making it much easier, so I think there is a much more significant challenge for not just the public sector, but private sector organisations in dealing with fraud because of that.
Professor Levi: There is a lot of scope for unchallenged behaviour. Who gets challenged by people? If you do not have face-to-face relationships, the opportunities for moral education are much fewer. Personally, I think there needs to be a lot more in schools, but there is a lack of capacity in the schools curriculum for that kind of thing. Also, there should be more about how to avoid being a victim and discussions about money muling and so on. There is a broader spectrum of behaviours where people can get involved in fraud that we need to look at collectively.
The Parliamentary Secretary, Cabinet Office (Georgia Gould)
Q
Professor Button: If you look at this in the broader context of hybrid policing bodies, which is one of my areas of study—non-police bodies that engage in a whole range of enforcement functions—what is being proposed in terms of the accountability of this body compared with, say, the Health and Safety Executive, the Gangmasters and Labour Abuse Authority and some of the many other different types of enforcement bodies is certainly on a par with, if not better, than some of those organisations, with the inspection, the complaints body that people have access to and the additional measures in place.
One of the crucial areas is obviously when you get to prosecutions. With the Post Office scandal, we have seen the challenges if you have too much control over prosecution as well. The Department for Work and Pensions does use the Crown Prosecution Service, but with the lesser sanctions, it might be an issue to have more accountability, where you have that situation, to avoid excessive use of those penalties in a very negative way. That is possibly the only area where I would see an issue. Otherwise, the accountability measures are very similar to the many other hybrid enforcement bodies that central Government have.
Georgia Gould
Q
Professor Button: Yes, I think that does. That is fine.
Professor Levi: His Majesty’s inspectorate of constabulary and fire and rescue services has been pretty tough on fraud policing by the police, so I am personally encouraged by the proposal for accountability and review by them. It is reasonably rigorous and scientific, and there is the National Audit Office as well. Following on from Professor Button’s comments, sampling behaviours at all levels is a good methodology for testing. The question that Dr Kassem was raising earlier about the internal stuff and the supervision of that is a more complex example.
Dr Kassem: My suggestion was more about having an independent oversight board—independent from the PSFA—to review the work and also perhaps to support an independent audit of the operation and see whether the Bill is actually working in terms of recovery and of transparency and fairness. Someone might say, “Okay, we need someone from the PSFA on the board to feed back about operational tasks and challenges and so on.” That is fair enough, but that could slightly reduce the independence that we are talking about. It can still produce a report to describe the work, the performance and the challenges that it met, and a completely independent board can then oversee the work and challenge and scrutinise it if needed.
Georgia Gould
Q
Dr Kassem: Yes.
Georgia Gould
It is really reassuring to hear that because oversight is incredibly important to us. I have one more question, but I am happy to give way to others.
Andrew Western
Q
Dr Kassem: Personally, I would recommend a board rather than an individual, because how sustainable could that be, and who is going to audit the individual? You want an unbiased point of view. That happens when you have independent experts discussing the matter and sharing their points of view. You do not want that to be dictated by an individual, who might also take longer to look at the process. The operation is going to be slower. We do not want that from a governance perspective—if you want to oversee things in an effective way, a board would be a much better idea.
Professor Button: The only thing I would add on the DWP is that it is likely to be much more resource-intensive. There are likely to be a lot more cases. Having an appropriate capacity is important for that.
Professor Levi: I agree with that. Historically, in relation to asset forfeiture, say, the problem has been one of excessive caution rather than too much activity. A lot of legal challenges remain. I was on the Cabinet Office Committee that set that up, and there can be too much governance of that, so there is a tension between having a lot of governance in place and saying, “Look, can we get on with it?”
Rebecca Smith
Q
Professor Button: It is important to tackle those areas. I am not sure whether it is something that needs to go in the Bill. I think it is more an issue of giving the body the capacity to go after those types of individuals and to work with other relevant policing agencies— I suspect that that would need to be the case—to deal with it, rather than saying such things in law. We have the Online Safety Act 2023, which covers a lot of areas. Is that useful enough? Are the Fraud Act 2006 and the historical offence of conspiracy to engage in fraud appropriate, or do we need to create a new, specific offence of, say, promoting social security fraud online? I would not like to comment on that; it is probably something that needs more thought. The key thing is more enforcement, and disrupting forums where that kind of discussion is taking place.
Professor Levi: There is also the issue of signalling to people where the boundaries lie. This is an issue not so much for the Bill, but for enforcement practice across the board. We need some condign activities that communicate to people via social media, as well as in the old media that we may read, what is acceptable, and what is and is not legal. The National Crime Agency has been pretty good about that in the cyber-crime area, in trying to educate people and to divert them away from crime. There are some good lessons across that. It is also a question of resource and how many such things people can deal with.
Georgia Gould
Q
Professor Levi: The Americans used to be better at this than may have been the case in the past few weeks. The General Accounting Office and some of the inspectorates general in the US have been pretty active, but the US still had a huge amount of covid-19 fraud. Australia is getting better. Clearly, the head of the Public Sector Fraud Authority is part of this group of people trying to improve things, but I would say we are starting at a pretty modest level, in terms of numbers of people. In terms of the DWP, it is a struggle for everyone. We have to look at it in relation to general welfare. I remember going to a meeting and talking to some French delegates who said to me that it was about—
The Chair
Order. That brings us to the end of the allotted time for this panel. I thank the witnesses very much for their evidence. We will move to the next panel.
Examination of Witness
Helena Wood gave evidence.
The Chair
We will now hear evidence from Helena Wood, director of public policy and strategic engagement at Cifas and a fellow of the Royal United Services Institute.
Mike Wood
Q
Helena Wood: I find it quite difficult to comment on that, given that we are yet to see the code of practice. A lot of burden has been placed on that code of practice as it stands to build in some of that proportionality. I know the Government have committed to consulting on that code of practice forthwith, but without seeing that, a lot hinges on how those powers will be used in practice. Without that being known to me at present, I would quite like to see something pulled up on to the face of the Bill to build in proportionality by design.
Both on the PSFA side and the DWP eligibility verification powers, the Bill is a very blunt instrument, as it stands, and I think the law would do well to pull up those proportionality measures on to the face of the Bill. We have to look at this Bill in its broader context: very much unintentionally, it stands at that ideological debate between the rights of the individual to privacy and the rights of society as a whole to benefit from the funds that are available to fund essential public services. We have to deal with both of those arguments with due caution and due respect. As it stands, the Bill tends to be quite blunt in the way things are proposed on its face, and I would like to see a lot more from that code of practice and how it will be built in.
Beyond that, I would like to see a lot more about the people who will be using these powers. Again, we trust the police to use their coercive and intrusive powers based on their skills, experience and training. At the moment, there is a reasonably low bar set in the legislation, which is merely to be a higher executive officer or senior executive officer—a very entry-grade civil service officer. Other coercive powers that we can see across areas I have studied over the course of a 20-year career, particularly the Proceeds of Crime Act 2002, require some professional skills: where one is not a police officer, one must be a trained financial investigator. It is a trained and accredited role that is overseen by statute. Here, the competence of the individuals using that power, and the trust we can thus place in them to use those powers proportionately, is quite limited.
Mike Wood
Q
Helena Wood: It depends which part of the Bill we are talking about. This is a game of two halves: some of the PSFA powers, for example, mirror powers that are used almost as standard across the landscape of counter-financial crime, and I think we can be more comfortable about the use of those powers. The power I have more concerns about is something that is very new and incredibly intrusive, and without limitation to it being a civil or criminal investigation: the DWP eligibility verification powers. There, we need to proceed with more caution about how they are used, given that this is very much at risk of being a blanket, phishing-style power without any recourse to the limitations and the bars that others have to reach to use other powers that would be either a civil or criminal investigation. I think that part of the Bill requires a little more thought and proportionality pulling up front, unless the Government can bring forward that code of practice to allow those of you around the room judging this Bill to see what will be in the code to limit the use of those powers to the highest risk of high-end investigations, rather than making it a blanket power.
Mike Wood
Q
Helena Wood: Absolutely. The concerns I have around those powers are about collateral intrusion. We can all agree that the quality of data both on the DWP side and on the part of financial institutions is not always as good as it could be. I completely agree with the need to minimise the level of information that those institutions give back to the DWP, to caution against unnecessary intrusions upon privacy, but I would like to see a minimum standard of data match that would be required to take action on that data. If the banks are only giving a minimum amount of information back into the DWP, how do we know that that is an absolute specific match on the individuals they have on their system? Without seeing information about how that will be acted upon in the code of practice, I am slightly cautious. We need to see that detail earlier rather than later, for you to be able to make that judgment about the risk of unintended consequences of this legislation.
Let us again look at this in its broader context. This is a very intrusive power, but it sits in a suite of other measures and powers available to investigators across the system. What we do not want to do with this power is to bring those other powers into disrepute. We have to apply it with due caution, making sure that a match is a match. I would like to see which specific data points will be available to the DWP investigator to ensure this is a match and to minimise the risk of collateral intrusion.
Andrew Western
Q
Helena Wood: That is a very good question. It goes back to the balance between individual rights to privacy and society’s rights as a whole. Only you can make the decision about where that balance falls. Going back to the previous question, I would like to see built into the oversight of the use of the power a specific requirement for the independent reviewer to look at instances of collateral intrusion and where mistakes have been made, and to report on those to Parliament. If we can build that into the code of practice—forgive me for keeping on going back to that code, but I think a lot of the use of this power hinges on how it will be used in practice and by whom. We need to build some significant guardrails against that.
The second point I would make is that to my knowledge, this is an unprecedented power internationally, so how can we be sure it is going to be effective in practice? We know, for example, that individuals rarely have one bank account in one institution any more. In fact, numerous pieces of research—forgive me; I do not have the figures in my head, but I can refer those back to the Committee—show that individuals now have masses of bank accounts across five, six, seven and up to 10 or 20 institutions. By targeting one institution, are you really going to get a full picture anyway? If this is to be proportionate, we have to be clear that intrusion is proportionate and is going to be effective in practice. I am yet to see the evidence that it is, if it is used in a scattergun way. That is why it would be great to build into the code of practice something much more targeted around risk. For example, high-risk postcodes coming through in intelligence around organised crime attacks on the benefits system might be one way to look at this.
Andrew Western
Q
My concern is about broadening the scope. We have taken significant steps, when set against previous proposals in this area, to narrow the scope of the Bill. For instance, we are initially looking only at the three benefits where we see the highest levels of fraud and error. Universal credit is obviously principal among those.
Does the work that we have done to narrow the scope reassure you at all when you look at the Bill—for example, the removal of the state pension and the restriction to only one financial institution? Clearly, without that, we would have to look at every single bank account in the country in detail and investigate why every single person in the country has £16,000, if we are unable to see across the full range of bank accounts that they have.
Helena Wood: Absolutely, and I will answer that question in two parts. If we compare this Bill with the predecessor Bill that was put forward by the previous Government, the concerns have been listened to. There is much more significant oversight and much more limited scope. If we look at that in comparison with the predecessor Bill, that is absolutely true.
On the second part of your question, you make a very good point that this is not always organised crime. I would build on the point made by my predecessors in giving evidence that this is absolutely what we would refer to as a first-party fraud-driven approach. At Cifas, we run a fraud behaviours survey every year, questioning individuals about their general attitudes to fraud—individual-level fraud—and we see those numbers ticking up year on year about what individuals deem acceptable. Your point is well made and fully made about the rising levels of first-party fraud. We do have to look at it as both a first-party fraud and an organised fraud response.
Andrew Western
Q
Helena Wood: A really good point was made, and others who follow me in this Committee’s evidence sessions will make it as well: fraudsters rarely simply defraud the public sector or the private sector. It is often the case that those with a propensity towards fraud will look at any channel through which they can gain financial benefits.
This is very much a narrow-facing Bill, but we have to look at it in its broader context. I would question whether DWP could be doing more to share information with the private sector, using existing powers to do so. There are plenty of voluntary information and data-sharing schemes available to which DWP is not plugged in. It would complement this particular power to be able to layer the data picture and the intelligence picture, and not just look at this single piece of information in isolation. There will be a number of data points across the private sector that you could gain through voluntary data-sharing schemes that DWP is currently not engaging with.
Rebecca Smith
Q
Helena Wood: Absolutely; the point was well made in previous evidence that the police simply do not have the resources to look at fraud against consumers, never mind to support DWP, so I think it is entirely necessary to extend those powers of search and seizure to DWP as well. Again, I keep coming back to the broader context: there are other powers. We should not assume that this Bill is the sole answer. It has taken a very civil lens, quite necessarily, on what is a huge-volume crime, which cannot be dealt with simply through a criminal justice response alone. We have to save that criminal justice response for use in a surgical way, for the really high-end cases, particularly in an organised crime sense. We should not be seeing it as an either/or.
What I would not like to see from this is the replacement of the necessary deterrent of a criminal investigation and prosecution with pure use of civil measures. We need to use that full suite of powers beyond this Bill, including those in existing legislation, such as the Proceeds of Crime Act 2002, and standard issue fraud criminal prosecutions. Something that I would like to see from the independent oversight is that we do not lose that criminal thread. We have to keep prosecuting where necessary, and providing that necessary deterrent through all the available means, not just the ones available in this Bill.
Georgia Gould
Q
Helena Wood: This is a really necessary approach. However, I would caution that we are holding off from establishing the PSFA as a statutory body for now, and I completely understand the reasons for that: we are in a very tight fiscal environment, the cost of setting up a new agency is substantial, and we need to test the competence of the PSFA in doing so. However, I think in due course we need a more fixed timeline to move the PSFA off into a statutory body, to at least remove any perception—if not actual political interference—in investigations. That is really important—we need a stronger timetable. I know that will happen when the time is right, but I would like to see a stronger timetable towards it. I think there will be at least a perceived risk of Executive overreach if the PSFA does not move in that direction more quickly.
Georgia Gould
Q
Helena Wood: There is a question of “Who guards the guards?” in some respect. This Bill has significantly built in oversight; I think at every step we see that. However, it depends who the independent chair is, and a question would be whether that individual could be subject to a parliamentary approval process, as other oversight positions are—particularly if we look at the National Audit Office model, for example. It might be good to build in a parliamentary approval process for the individual who will take that role.
Georgia Gould
Q
Helena Wood: That is a really good question, which deserves more considered thought. These are people who have not gone through the police training process, for example.
I wonder if it is worth considering whether we make use of the powers contingent on being a financial investigator, as accredited under the Proceeds of Crime Act. However, I make that suggestion with some caution, knowing that in a practical sense there is a national shortage of financial investigators across the country. We are haemorrhaging these individuals; we train them up in the public sector and they go straight out to be poached by the financial sector, and probably to respond to some of these measures set out in the Bill. I say this with some caution, however, as that is a properly accredited and overseen process of skills. We need to look carefully about who exercises those powers and whether they need to do an analogous police training programme. I think there is some consideration of the professionalising investigations programme, although they cannot be officially credited over time—they will not be using the powers as frequently as that process would require.
Those are the parts of the Bill I would like to see strengthened in some way. It is perhaps incumbent on the Government to look at what the other routes are beyond a financial investigator to ensure the right level of competence in using what are very intrusive powers.
Andrew Western
Briefly, on the question of efficacy and scale, His Majesty’s Revenue and Customs has powers at the moment to request information from banks en masse. Given the experience we have within Government of doing that, and from what I can see, the lack of problem with it, I wonder whether you feel—
The Chair
Order. Alas, that brings us to the end of the allotted time for the Committee to ask questions. On behalf of the Committee, I thank Helena Wood for her evidence. We will move on to the next panel.
Examination of Witnesses
Kristin Jones and Alex Rothwell gave evidence.
The Chair
We will now hear evidence from Kristin Jones, formerly of the Serious Fraud Office and the Crown Prosecution Service, and from Alex Rothwell, chief executive of the NHS Counter Fraud Authority. For this panel, we have until 11 o’clock.
Mike Wood
Q
Kristin Jones: I am sure I have the same answer as Helena. Until we see the codes of practice and the operational guidance, it is difficult to tell. Obviously, I have operated in very regulated situations where there has been accountability, but without that extra information, I cannot really say at the moment. But I think it is important that when you interfere with the rights of the individual, decisions are taken at a sufficiently high level by people with sufficient experience.
Mike Wood
Is that your view as well, Alex?
Alex Rothwell: I would echo Kristin’s thoughts. I suppose there is not necessarily anything novel in the Bill. Those powers exist elsewhere, so we have seen them in operation. The ability to test and learn, which is baked into the proposals, is very helpful. Importantly, it addresses a need.
Mike Wood
Q
Kristin Jones: Not on the face of the legislation necessarily, but I would perhaps expect certain commitments in debate that the code of practice will cover certain areas.
Mike Wood
Q
Kristin Jones: I do have some reservations about dealing with corporate organisations, as was expressed earlier, because a corporate cannot speak itself; it can speak only through its officers. The Bill only talks about notices; it does not talk about answering questions. It is quite difficult if you are not able to ask an officer of a corporate questions and you have just written answers through notices. I wonder whether there are sufficient powers for dealing with the more serious, top end of public sector fraud.
Mike Wood
Q
Alex Rothwell: Perhaps a good example is that although we believe we are losing something in the region of £1.3 billion a year to fraud, the amount of fraud that is actually identified is relatively low, because a lot of the value we get is from future prevention. For example, in 2023-24, the figure was something like £5.2 million, but we only recovered 12% of that figure. There is a lot more value to be had. The Bill will be incredibly helpful for us to recover more money from people who have been suspected of fraud. When it comes to pursuing criminal justice outcomes in relatively low value cases—perhaps individuals who have taken £5,000 or £10,000, who have been exited through human resources processes or who have simply left the organisation—the Bill gives us an incredible opportunity to recover more funds, and I think we would use it extensively.
Mike Wood
Q
Kristin Jones: My career has been dealing with fraud in the public and private sector, and I think it is important that when fraud is investigated and you discover something that is not in your scope, you are able to communicate it so that fraudsters are tackled, whether that is in the private or public sector. That is my only concern.
Alex Rothwell: The Bill seems pretty comprehensive in terms of our requirements. There are things that I have concerns around, including training—not just of individuals who are exercising the powers, but of those who manage them and set the culture and tone of an organisation and how it is built in. I echo Kristin’s comments about private sector providers. For example, we are increasingly seeing private sector providers providing NHS services, so how would that be exercised? From my point of view it is more about the exercise of the powers than the extent of the powers.
Kristin Jones: The other thing I think is missing compared to when other organisations have been established is that we only talk about investigators. I am a great believer in a multidisciplinary team, with early legal advice, accountancy advice as necessary and financial investigators, but we have an organisation at the moment in which we only define the role of the investigators.
Andrew Western
Q
Alex Rothwell: I certainly echo your thoughts in terms of attitude. We have seen that expressed in a number of different ways through surveys and transparency—the international transparency index, for example. In terms of statistics, we have seen our fraud prevalence rate remain fairly steady over the last five to seven years, but it is a complex picture because I think that we have been increasing our fraud protection measures as well. What we have seen across the board are bitter pay disputes and a sense that contracts do not pay enough. We have extensive provider assurance programmes that are recovering funds through what we classify as error. I do not see any change in that climate necessarily. Opportunities to strengthen prevention, for us, are the most important factor to influence people’s decision making before they commit fraud. So it is a huge concern to me, but not necessarily in terms of statistics.
Kristin Jones: During my career, I have seen sentences for fraud increase dramatically and that sends a clear message but, over my career, instead of only a few people being exposed to fraud, when you answer your telephone, there is a good chance you have a scammer at the other end; it could happen once a week, if not several times a day. If you are being targeted, it could be every mealtime, with the scammer hoping that while you are distracted you will fall for some con. The worry is that the public are exposed so much to fraud that its seriousness gets watered down in their mind. You have these forums where you can recommend how to claim various things from the Government and how to hit sweet spots to get that benefit or grant. So it has changed and perhaps people are not as shocked by fraud as they used to be.
Andrew Western
Q
Alex Rothwell: Data sharing is critical to our ability to prevent fraud. We have a particular challenge in the NHS in that medical records are in a particular category, so we are exempt from the Digital Economy Act 2017. Perhaps I would focus in the first instance on the rich data sets that the Government actually hold and our ability to communicate inter-Department. Those data sets are critical, yet it is still challenging to obtain data. In many ways, the data protection legislation already provides the ability to share information, particularly where fraud is concerned, although the application of it is often quite risk averse. I wish it had been called the Data Sharing Act and not the Data Protection Act, quite frankly.
Kristin Jones: I come from a slightly different angle on this. Having prosecuted for many years and had to deal with the Criminal Procedure and Investigations Act 1996 and the responsibility to gather material and go through it, I think it is important, if you have data, to decide what you are going to do with it. In preparing for this Committee, I looked at the National Audit Office report on carer’s allowance. There you have a lot of data being gathered, passed and, if it is not addressed, discarded. For me it is important, if you gather data, to do something with it. There has been a lot of discussion about error. It is important for the public that, when they apply for something that they may not be entitled to, if that information is held, they can rely on that. If you apply for a passport and you fill the form in wrongly, you do not get your passport. It should be the same in other parts of government. You should be able to rely on the information the state already holds on you. This relates to the point about child benefit.
Siân Berry (Brighton Pavilion) (Green)
Q
Alex Rothwell: In terms of search warrants and physical access?
Siân Berry
Yes. The other powers that you mentioned already exist and are being transferred to a new place where things are conducted. Eligibility verification in the form that it is written is quite novel.
Alex Rothwell: Does His Majesty’s Revenue and Customs not have the ability to conduct those inquiries?
Siân Berry
As inquiries, but the difference is that we are talking about routine use.
Alex Rothwell: More extensive use.
Siân Berry
Yes. Would you care to comment on the eligibility-verification powers more specifically?
Alex Rothwell: I can see why there is concern. People have complex lives—perhaps it is not as straightforward as how much capital is in a bank account at a particular time. I think the powers need to be exercised very carefully. I am reassured by the opportunity to test and learn from the process through oversight, but I do recognise the concerns.
Kristin Jones: I used to be in charge of international assistance when I was at the Serious Fraud Office. One of the difficulties is that whereas other countries have a central bank register or building where you can tackle that and find out all the accounts and individual holes, here we do not. It is more tricky to try to verify financial information because there is no central register.
Alex Rothwell: We were speaking before about whether it is flexible enough to cover future events. The way that we use cash or funds is changing in terms of digital currencies and so on, and the way that people hold value is changing.
Siân Berry
Q
Alex Rothwell: Yes.
Michael Payne
Q
“It is very unlikely that most of the losses due to fraud and corruption”
during the pandemic
“will ever be recovered.”
How far do you agree with that statement? Do you think the new powers for the Public Sector Fraud Authority change the prospects?
Alex Rothwell: I absolutely do think they change those prospects. I was still in law enforcement when covid-19 was happening, and there was an extensive discussion about the police’s ability to support investigations. Frankly, policing had significant challenges with fraud, and still does, in terms of the volume of attacks against individuals and businesses, which made supporting the public sector almost an impossible ask, so I certainly welcome the ability to strengthen the public sector fraud response.
On whether the money will be recovered, there are significant challenges, as I am sure you are aware. It is right to apply a cost-benefit approach as well; although there is a moral imperative, we increasingly look at things in a commercial sense and at whether there is financial value in recovering funds.
Kristin Jones: It is very difficult to get money back from fraudsters, especially where it is organised, because the money disappears into different accounts in different names, and overseas through lots of corporate bodies, so it will be a big challenge. The important thing about this piece of legislation is whether we are future-proofing it so that, looking forward, we can learn from what has happened in the past and not repeat the mistakes.
Rebecca Smith
Q
Alex Rothwell: If we take the view that fraud has already happened—I have spoken about prevention, but once a fraud has happened and we have discovered it—there are increasingly limited opportunities to pursue criminal investigations. Although we maintain a strong investigative capability that deals with more serious types of criminality, we know about the challenges in the criminal justice system—the disclosure burden is high, it is incredibly expensive to run criminal investigations, and often they take eight years or longer to reach fruition—so we are increasingly looking at how else we can deal with fraud when it is presented to us.
In many ways, it is the low-value, high-volume cases that we see that are more challenging, where we are perhaps seeking to recover funds from someone who has taken £5,000, as I mentioned earlier. This is where I have the most interest in the Bill, because I think we would seek to use those powers extensively, and of course every penny that we recover is money that will be well spent in the NHS. I do not necessarily see any gaps in this particular legislation. There are elements of the work that we do in the national health service where we would benefit from some more powers, but the focus here is obviously on the Bill, rather than on our own ability. A lot of that would apply to how we access medical records, for example.
Georgia Gould
Q
Alex Rothwell: If we look across other international jurisdictions, we see that law enforcement agencies often have quite distinctive public sector fraud or crime functions—for example, the FBI has an extensive healthcare fraud capacity. The way policing has evolved over the last 20 or 30 years, particularly with an emphasis on drug supply, knife crime and firearms, has meant there is little capacity in policing to tackle public sector fraud, and of course there is an ever-present terrorism threat, which is changing rapidly. There is also safeguarding, with the National Crime Agency having quoted publicly the figures in terms of people who are a risk to children, for example.
One of the challenges is that even if you invest more in fraud capability, when a crisis happens, whether that is because of public order or some other form of crisis, policing has to flex more than other investigations. Inevitably, crimes like fraud are perhaps easier to put on hold for a time. Certainly since 2018 we have seen a gradual professionalisation and an increasing capability in the public sector, which I endorse. We could invest more in the police, but my concern is that there will continue to be crises that affect policing that will impact the ability of policing to support the public sector in the way that is required.
Kristin Jones: I agree with everything that Alex just said. The same applies to prosecution: if you have specialist prosecutors, where the resource is ringfenced, they do not get dragged away, but if you have them in with other prosecutors, it depends on what the pressure is at any particular time as to what resource is going to be given to fraud prosecutions.
Gill German (Clwyd North) (Lab)
Q
Alex Rothwell: One thing that we have always struggled to do is put a value on deterrence, because it is quite hard to say categorically that someone has not done something because of a change in approach to something. However, it is my view that, once it is known that there are increased powers in this space and that individuals will be pursued for funds, we will see some behaviour change. We could potentially quantify that, but the challenge is directly relating it to the Bill, particularly if you introduce other measures at the same time. I think there will be a powerful deterrent effect if it is exercised correctly and at scale and the public can see the benefits.
Kristin Jones: I agree. If people know there is an increased likelihood that they will be detected, that will have an effect. It is also important to use similar means to get the right narrative across about what you should and should not be doing.
Georgia Gould
Q
Kristin Jones: We have to plan for emergencies—they will, inevitably, occur—and the work on that should be kept up to date so that you can refer back to one you prepared earlier. That is so important because when there is an emergency, everybody is doing their best to get through it as fast as they can, and that is not the time for slow consideration, whereas having been through that experience, now is the time to reflect and document what we are going to do in future.
Alex Rothwell: Fundamentally it is about the loosening of controls, our understanding of the impact of the loosening of controls, and the friction that is or is not introduced when you are addressing an emergency. We also now have a much better understanding of how that can manifest itself. But I am confident that the Bill would enable an effective response.
Georgia Gould
Q
Alex Rothwell: From my perspective it is the digital footprint that is left and our ability to analyse that at scale. Very few transactions, if any, take place that do not have a digital or electronic footprint of some kind. The data sharing and our capability to analyse that data is the most important factor. The Bill goes some way to addressing that, but obviously elements of the Bill are about responding to fraud once it has happened. That, for me, is the biggest challenge. But on top of that are the safeguards that we put in place to ensure that our interpretation of that analysis is also correct.
Georgia Gould
So the other half—the prevention side—has to accompany this.
Alex Rothwell: Absolutely.
Georgia Gould
I very much agree.
Kristin Jones: Increasingly in society today knowing what the truth is, with the amount of data and false information out there, can be the problem.
Andrew Western
Q
Alex Rothwell: Data analysis has been particularly effective, as has getting better at recording and reporting—for example, we now have a ubiquitous case recording system that exists across the national health service. The greatest value we have seen so far has been in improved data analysis on large datasets that exist on, for example, national contracting. That is where the value lies in future.
Georgia Gould
Q
Alex Rothwell: Yes, it is. As I mentioned, the professionalisation of fraud specialists has made huge inroads in terms of the acceptability of fraud professionals, particularly in a finance environment—we deal with audit committees and so on—and there is also the recognition that the Government are taking fraud seriously. That is not just this Government but the previous one as well. The direction we have had from the Cabinet Office—
The Chair
Order. That brings us to the end of the allotted time for the Committee to ask questions. I thank the witnesses for their evidence. We will move on to the next panel.
Examination of Witnesses
Anna Hall and Christy McAleese gave evidence.
The Chair
For our final session this morning we will hear oral evidence from Anna Hall, corporate director of debt, and Christy McAleese, debt advice strategy and policy lead, both at the Money and Pensions Service.
Rebecca Smith
Q
Anna Hall: A lot of the operational detail of how the powers will work needs to be worked through, and the code of conduct will clearly be extremely important. Already existing in government are the debt management vulnerability toolkit and the public sector economic abuse toolkit, both of which have been set up by the cross-Government and cross-debt advice sector fairness group. We would like to see those existing systems tailored for the Bill and the recovery powers, to make sure that the code is implemented fairly.
There is lots of detail in the debt management vulnerability toolkit. It is about making sure that every individual is treated fairly, no matter how the debt has arisen. Once a debt is owed to Government, we are interested in how someone is able to set up a sustainable repayment plan. How are they able to access free debt advice and get the support they need? Regardless of how the debt has arisen, there is their ongoing expenses, their family, the need to make sure that there are no unintended consequences for wider society and their family, and how that debt is recovered.
Christy McAleese: I agree with Anna. There are possibly also opportunities in the code of conduct to build on some of the good work that the Department for Work and Pensions has already been doing on its ways of working with the debt sector. That includes good and consistent signposting and referrals through to free debt advice if, as seems reasonable, someone who has perhaps been contacted by the Department seeks advice from the sector. There are also some things around the acceptability of the debt sector—the advice worker being able to act on behalf of the person, so third-party forms of authority—and we could look at that. That would streamline the process for the person in debt and make it much easier for the debt sector to work with the Department. There are probably other things in that area.
Rebecca Smith
Q
Anna Hall: We can talk about who should be consulted. Debt advice organisations and consumer groups are important, because they will be the ones that interact with and support individuals in how they set up repayment plans and interact with the debt they owe to Government. At the Money and Pensions Service, we have an adviser panel, whereby we convene the debt advice sector, creditors and everyone who interacts in the ecosystem of debt advice. We can certainly support with that.
We are pleased with how DWP officials have engaged with us so far. They are clearly prioritising the people who are likely to be vulnerable. We work with them on an ongoing basis and expect to continue that through the development of the code of conduct.
Christy McAleese: To add to that briefly, we have a track record of doing consultation exercises in this area, and we have been sharing some of those learnings with colleagues at the DWP. In particular, as Anna mentioned, our debt adviser panel, which is made up of frontline advice workers from right across the sector, has been a valuable forum for us to understand how particular aspects of work that we are doing, and wider Government work, impact on the sector, and particularly on people in debt. Colleagues at DWP have been discussing how they can interact with that panel as part of the process as well, which we would really welcome.
Rebecca Smith
Q
Anna Hall: One thing that we know quite a lot about at the Money and Pensions Service is how people in debt behave. They do not always behave in a particularly rational manner, or in the way that you might expect people to behave, as with all people interacting with systems.
It can be incredibly overwhelming to have multiple debts. If you draw an analogy to other types of debts that people might owe—say, mortgage arrears or rent arrears—the fact that you might lose your home if you do not pay it is obviously an effective deterrent. For some people, those kinds of consequences are an effective deterrent. But we see day in, day out in the services we fund that people leave it right to the last minute before they seek help, and some people do not seek help at all. There can be all kinds of reasons for that. It could be something to do with them—they may struggle with literacy; they may have really overwhelming mental health issues; or it could be that they just do not know what to do. It could also be that they do not know where to seek help from. So I am sure it will be a deterrent for some people, but for other people, deterrents are not really the reason that they do not engage with the system.
We think it is really important that the systems that are set up once a debt has arisen are encouraging and supportive and help people to engage with the Department, so that they can set up an affordable and sustainable repayment plan. That will minimise the number of people who get to that point. We have experience of working with the finance sector and with other Government Departments that are trying to recover debt. If you really focus on being supportive, encouraging and creating the environment where frontline staff are people that you would want to disclose information to, set up income and expenditure, get a signpost to debt advice from and those kinds of things—if that is inherent in the system—you will not need the deterrent very often. There are huge numbers of people who are very vulnerable who have multiple debts, and deterrents are not really the thing that will impact on their ability to engage.
Andrew Western
Q
Anna Hall: We work with the Department in a number of ways. One of the most recent initiatives is working with Jobcentre Plus colleagues to embed the Money Adviser Network referral system into that. That means that where people present at Jobcentre Plus for a variety of reasons and are identified as having some kind of debt or money difficulty, they can either be referred to the MoneyHelper website—that is the Money and Pensions Service website—which has a variety of information on money, debt and pensions, or they can get a referral through the Money Adviser Network to one of our funded debt-advice providers. It is as seamless as possible and it really enables someone who presents perhaps not realising that there is help out there. When someone interacts with a system that they have to interact with, it is great if we can offer a real range of support that allows them to get to debt advice as quickly as possible.
I probably would say this, wouldn’t I, but debt advice can be absolutely life-changing for people? Its impact is huge. One thing we know is that people often do not know that debt advice exists. A huge number of people would benefit from debt advice. They do not know where to look or how to find it and think that is maybe is not for them, and they do not know what will happen when they get debt advice. If you have someone reassuring at the jobcentre saying, “This is a really independent, trusted service and it can help you sort out your financial affairs, and here is a seamless transfer through to that debt advice service,” that can be incredibly effective.
We are working with the Department, in Jobcentre Plus and across the board, on where people are particularly vulnerable and where they really need that support before they can even start to think about finding work or engaging with other things. If you are worried about whether you have food, whether you have money coming in and what you are going to do about the bailiff who is coming to knock on your door, you really need to deal with that before you can look at your long-term future.
The Department and all the officials we have been working with have been prioritising that. Being an arm’s length body of the Department for Work and Pensions is really helpful to make those connections, and embedding debt advice into all those systems has been really welcomed by the Department.
Andrew Western
Q
Can you reflect on the way that we have structured the process for people to engage with the Department when they are notified that they owe us a debt? We have done everything that we can to structure that as a power of last resort. Do you think that that is as robust as it can be with the multiple points of contact, the attempt to agree a sustainable and affordable repayment plan, and the ability, even after we have agreed a deduction, for somebody to come back to the table and negotiate that with us? Is there anything else that you would like to see in that space, or do you think that that is robust in reassuring ourselves that it is a power of last resort?
Anna Hall: It certainly looks that way from the detail in the Bill. As others have said, the code of conduct will be the critical thing. One of the things is that if frontline staff are not picking up vulnerabilities, or they are not trained in how to sort out affordability, in empathic listening or in all the protocols about how to have different types of conversations with people in different types of vulnerable situations—if those things are not in place—some of the processes in the Bill will not be as effective. It comes down to the training for frontline staff, and the capacity and processes to then follow up on what has actually been disclosed, that will enable those repayment plans to be put in place before those later processes. If those are not in place, that could cause some real issues. How successful this Bill is will come down to the code of conduct, as many have said.
Christy McAleese: I agree with what Anna has said. There are probably parallels with what has happened in the financial services sector and changes due to consumer duty and other requirements there. They have found that it is about embedding that culture in frontline staff and recovery staff, and making sure that they are trained effectively. The process on paper needs to be brought to life. We have been assured by the colleagues we have been speaking to at DWP so far that that is in their thinking. They have really demonstrated a willingness with us to learn what they can from how this is approached in the debt advice sector as well. We are reassured on that.
Andrew Western
Q
Anna Hall: We understand the DWP’s intent to ensure that debts can be recovered across all the different groups of people who might owe money. We are really focused on what happens when that debt arises and how people are treated in that situation. It is probably slightly outside our remit to comment on some of what you just outlined, but once the debt has arisen, we would look at how people are treated fairly in that situation across the board.
Christy McAleese: I have nothing to add.
The Chair
There being no further questions, I thank the witnesses for their evidence.
Ordered, That further consideration be now adjourned. —(Gerald Jones.)
Terminally Ill Adults (End of Life) Bill (Twelfth sitting)
Tuesday 25th February 2025
(1 day, 17 hours ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Chair
Electronic devices should be turned off or switched to silent. The only cups that I should see are those filled with the water provided in the room—no tea or coffee. Let us continue our line-by-line consideration of the Bill.
Clause 1
Assisted dying
Naz Shah (Bradford West) (Lab)
I beg to move amendment 281, in clause 1, page 1, line 20, at end insert—
“(c) has met with a palliative care specialist for the purposes of being informed about the medical and care support options.”
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
The Chair
With this it will be convenient to discuss the following:
Amendment 299, in clause 7, page 4, line 17, after “(g)” insert
“and the condition in subsection (4) has been met”.
This amendment is consequential on Amendment 298.
Amendment 298, in clause 7, page 4, line 26, at end insert—
“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a palliative care specialist that the person has had a consultation with that specialist about the palliative care options available to them.”
This will require the coordinating doctor to be of the opinion that the person has had a consultation with a specialist in palliative medicine.
Amendment 304, in clause 9, page 5, line 41, leave out “any available” and insert
“the person’s experience of specialist”.
This amendment would require the assessing doctor to discuss the person’s experience of specialist palliative, hospice or other care.
Amendment 311, in clause 12, page 8, line 14, at end insert
“and
(i) the person has had a consultation with a consultant who is a specialist in palliative medicine.”
This amendment would require that a person has had a consultation with a specialist in palliative medicine before the High Court could issue a declaration.
Naz Shah
Amendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide.
Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them.
If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide.
Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.
Danny Kruger (East Wiltshire) (Con)
The hon. Member mentions the principle that palliative care is a holistic service. Does she agree that, given that the Bill’s advocates—including the promoter, the hon. Lady for Spen Valley—emphasise the need for a holistic range of opportunities for end-of-life care, palliative care needs to be central to that? Rather than suggesting that there is an either/or between palliative care and assisted dying, the advocates of the Bill have often stressed the importance of having both options. Does the hon. Member for Bradford West agree that it is strange that the Bill does not require palliative care consultation as part of the range of services that are offered to patients when they are having their consultation?
Naz Shah
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend talked about the stories that we heard on Second Reading. Does she acknowledge, as Dr Sarah Cox from the Association for Palliative Medicine said, that there are cases where palliative care cannot meet a patient’s needs? We have a lady in the Public Gallery this morning whose mother had a horrible death, having had ovarian cancer and mouth cancer; she had to have her tongue removed, so she could not eat and drink, and she essentially starved to death. We have to be careful not to dismiss those cases, because they are real stories of real human beings, and we have to acknowledge the limitations of palliative care.
Naz Shah
I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.
In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.
Sojan Joseph (Ashford) (Lab)
Does my hon. Friend think that giving everyone access to palliative care would resolve some of the concerns about coercion and consent?
Naz Shah
My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.
Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.
Naz Shah
I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.
As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.
There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,
“They are doing this to save money…to kill us off.”
To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.
Danny Kruger
I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).
At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.
I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.
Dr Simon Opher (Stroud) (Lab)
I thank my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire for their speeches. I also thank my hon. Friend the Member for York Central (Rachael Maskell), who is a fantastic campaigner for excellent palliative care, for tabling the amendment.
I cannot disagree with almost everything that has been said: people need to be given real choice, and they certainly need to be given the choice of palliative care. As the hon. Member for East Wiltshire said, people need to be offered palliative care. That is absolutely crucial to the Bill. However, the amendment would make it a requirement that a patient has met someone in palliative care. What would happen to a patient’s autonomy if they did not wish to see a palliative care doctor? Would they be excluded from the process? It is incredibly important that people have real choices with respect to palliative care in this process.
I note to the Committee the fact that clause 4(4) states:
“If a registered medical practitioner conducts…a preliminary discussion”
with a person, they have to also discuss with that person
“any available palliative, hospice or other care, including symptom management and psychological support.”
That is in the Bill. It needs to be offered.
I have had patients who have not wished to see a palliative care consultant. It is their autonomy to make that choice. I do not think that it is a wise choice—I think almost every doctor would try to push them towards palliative care—but we must not exclude those patients from accessing an assisted death if that is what they want. That does not mean that people should face a fork in the road, as the hon. Member for East Wiltshire just mentioned. This is not an either/or: sometimes people can receive excellent palliative care and still request an assisted death, as my hon. Friend the Member for Spen Valley said.
I absolutely agree with many of the things you have been saying. I totally agree that we need better palliative care—although, actually, we have pretty good palliative care. In 2017, palliative care in this country was the best in the world, and we need to rebuild back to that again. But having a requirement that someone has to have seen a palliative care consultant will weaken the Bill. I urge the Committee to reject the amendment.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
It is a pleasure to serve under your chairmanship, Mr Efford. I start by gently pushing back on what my hon. Friend the Member for East Wiltshire said about this being a fork in the road. I do not see the Bill giving patients that ultimate option. They have the choice to opt for an assisted death while continuing with their palliative care all the way along; in fact, they could then decide that they did not wish to have an assisted death, although that opportunity would be open to them. I do not think that the choice is the binary one that has been presented; I am sure that was not the intention, but I just wanted to gently push back.
Rebecca Paul (Reigate) (Con)
I appreciate your giving way. The point that we are trying to make is that it is important to provide the information about palliative care. I understand the reservations of the hon. Member for Stroud about forcing someone to see a palliative specialist, but wording can be tweaked or changed to allow that choice. The key thing is that the opportunity to meet a palliative care specialist is provided so that the patient has the option, if they so wish, to seek that information.
At the end of the day, I think we can all agree that information allows people to make the right decision for themselves. Rather than getting too hung up on the exact wording of the amendment, I suggest that—this applies to quite a lot of the amendments—we think about the spirit of what we are trying to do.
The Chair
Before the hon. Member for Solihull West and Shirley continues, I should point out that when Members say “you” or “your” they are referring to me in the Chair. It has happened a couple of times. We all do it—we all make mistakes—but please make the effort not to use “you”.
Dr Shastri-Hurst
I am grateful to you, Chair, and to my hon. Friend the Member for Reigate for her intervention. She is right: it is absolutely critical that patients are given the full information in order to make an informed choice. I do not think any of us would disagree with that. But actually that goes entirely with the wording of the Bill as it stands. The hon. Member for Stroud has already highlighted the relevant provision—clause (4)(4)(c), which states that the initial discussion must explain and discuss with the patient
“any available palliative, hospice or other care, including symptom management and psychological support.”
Therefore a requirement to have those discussions is already stipulated in the Bill.
My hon. Friend the Member for Reigate makes an interesting point about who has that discussion. But are we saying that only a palliative care specialist is capable of having those discussions? Of course, those who work in the field are highly trained individuals, but we must not be unfair or do a huge disservice to other healthcare practitioners who provide excellent palliative care in this country.
My father was a general practitioner for more than 40 years. He provided a huge amount of palliative care throughout his career, both in the community and in hospices. Look at Marie Curie’s own website, which talks about the provision of palliative care in this country and very much about primary care provision and secondary care provision. Within secondary care, of course, are the specialists—clinical nurse specialists, occupational therapists, physiotherapists; I could go on. But of course, as the hon. Member for Stroud will know particularly well given his former profession, there is another body of general practitioners, community nurses, district nurses, advanced nurse practitioners, pharmacists and social workers, who are all involved in this process.
I think the amendment comes from a good place; at first blush, I can see absolutely where it is coming from. But despite that, it leads us down the bureaucratic thicket that Chris Whitty spoke about.
Naz Shah
Professor Sleeman’s evidence to me around palliative care says:
“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”
I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?
Dr Shastri-Hurst
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
Danny Kruger
My hon. Friend is making a thoughtful speech, but I am concerned that he suggests that the skills required are simply the skills of conversation. The skills required are the skills to understand the patient’s condition and lay out very clearly to them their prognosis and the treatment options available to them.
With all respect to my hon. Friend’s father and other GPs, I cannot accept that every GP is fully qualified to understand the dying trajectory of the patient before them—perhaps my hon. Friend will confirm his belief that that is so. If that is true, what is the point of the palliative care profession? We have GPs already and are now introducing psychiatrists and social workers into the mix; I do not understand why on earth it should be regarded as unnecessary to include professionals in palliative care—the key skill that we all recognise as so important in this space. Why not?
Dr Shastri-Hurst
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
Dr Shastri-Hurst
I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.
Juliet Campbell
I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.
Dr Shastri-Hurst
The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.
We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.
Dr Shastri-Hurst
I will give way because the hon. Lady has been very patient.
Naz Shah
I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.
I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.
At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—
Dr Shastri-Hurst
I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.
This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.
The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain
“any available palliative, hospice or other care.”
It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.
The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.
Rebecca Paul
A thought has suddenly been triggered: we are talking as if the provision of this service is undertaken by the NHS, but what are my hon. Friend’s thoughts if the service were being delivered privately? How does that interact with his automatic assumption that there would be a referral to a palliative care specialist?
Dr Shastri-Hurst
I do not think that offends the principle at all. Whether I was working within the NHS or the private sector, if a patient requested an onward referral to a different specialist, I would action that. If I did not have the requisite skills or knowledge, or felt that they would be better served by a different speciality, I would refer on to another clinician. I do not see how it would be treated any differently in the NHS than it would be privately. I am afraid that I do not follow that argument.
Kim Leadbeater
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.
Danny Kruger
The hon. Lady is making a very good speech about how things should work and how things do work, in many cases, when the NHS does its job brilliantly. First, I want to correct the hon. Lady: subsequent amendments do impose the duty that is consequent to these amendments to clause 1, so it would be an obligation. Surely that is the point to make: what if the doctors are not as brilliant as she suggests? What if there is not an expectation that they should definitely seek expertise that they do not have themselves? To the point made by my hon. Friend the Member for Reigate, what if this service is provided outside the NHS by an independent charity or private provider set up explicitly to facilitate people’s assisted death requests, and has no intention of referring people to palliative care if they do not ask for it themselves? Would she be content for a private provider to refer somebody for an assisted death without a palliative care referral?
Kim Leadbeater
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
Kim Leadbeater
But it does not say that at all. It actually says that they have to refer, and that they have to consult with other people. That is part of the process. That is exactly what happens now. Professor Aneez Esmail, who is the emeritus professor of general practice at the University of Manchester and who has been a practising GP for over 30 years, told us in his evidence to the Committee:
“In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people…palliative care…works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 171, Q219.]
Indeed, as was referred to by the hon. Member for Solihull West and Shirley, if we consider the training included in the Bill, which doctors will undergo as part of the introduction of assisted dying, evidence from other jurisdictions shows that these are very detailed conversations where health professionals work together in the same way as they do at the moment in end of life care and decision making. As I have said repeatedly, the training is fundamental. I agree absolutely with Dr Rachel Clarke, who told us:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
I agree 100% and I have embedded that in the Bill.
Sean Woodcock (Banbury) (Lab)
My hon. Friend quotes Dr Rachel Clarke. I was profoundly moved by her evidence. She was very clear that she wanted to talk about the NHS as it is, not as we would like it to be. Despite the efforts the Government are putting into bringing down waiting lists, there is still extreme time pressure on doctors. There are extreme waiting lists for people to access specialist care, which may impinge on the ability of doctors to carry out what my hon. Friend is asking. Does she accept that?
Kim Leadbeater
That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.
To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor
“must refer a patient to another suitably qualified practitioner when this serves their needs”.
This is what doctors do: they refer if they need extra advice; they take a holistic approach.
Kit Malthouse (North West Hampshire) (Con)
I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.
Kim Leadbeater
The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.
Kim Leadbeater
I am going to finish, if I may.
We need to be really careful that we take a person-centred approach, as happens now. Doctors, medical practitioners and healthcare professionals quite rightly take a holistic patient-centred approach. That approach will be further enhanced by the robust training the Bill incorporates, and by adding the extra layers of safeguards and protection. Really importantly, it would open up conversations about death and dying.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairmanship, Mr Efford.
As previously stated, my role, and that of the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, is not to give a Government view, given that the Government remain neutral on the Bill, but to outline the legal and practical impacts of amendments tabled.
The amendments are intended to add a new step in the process set out in the Bill, requiring consultation with a palliative care specialist. The purpose of amendment 281 is to require a person to have met a palliative care specialist before completing the required steps and assessments to end their life. The purpose of the amendment is to ensure that the person has understood the full range of end of life options available to them. Our assessment suggests that the present drafting, adding a subsection to clause 1(2), would not achieve that effect without further amendments to other clauses in the Bill. The amendment would increase demand on palliative care specialists and, should Members decide to amend the Bill in this way, we would need to work with the NHS and other provider organisations to assess how to operationalise it.
Amendments 298 and 299 would require the co-ordinating doctor to have received confirmation that the person seeking an assisted death has had a consultation with a specialist in palliative medicine about palliative care options before they are able to make a first statement under clause 7(3)(a). That would mean that a co-ordinating doctor would not be able to make a statement following a first assessment, and therefore refer a person to the independent doctor for a second assessment, unless the person had had a consultation about palliative care options with a palliative care specialist. As with previous amendments, the amendment would increase demand for palliative care specialists, and we would need to work with the NHS and other provider organisations to assess how to operationalise it, should hon. Members decide to pass amendments in that area.
Naz Shah
I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was:
“The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
Danny Kruger
To pick up on that point about Dr Cox, I think it is critical that the hon. Member for Spen Valley cited Dr Cox in support of the hon. Lady’s contention that the Bill is adequate. Dr Cox, in her evidence, was saying that there is a problem with the Bill because it does not require the multidisciplinary consultation that we all think needs to happen. Dr Cox was suggesting that the Bill should be amended in order to ensure that the NHS does its job properly, and that multidisciplinary consultations are held. Her evidence was not in support of the Bill as it stands.
Kim Leadbeater
On the point made by the hon. Member for East Wiltshire, the Bill does not replace what already happens, and what Dr Cox was saying was that those conversations are already happening in a multidisciplinary way. We do not take that away.
Naz Shah
One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?
Daniel Francis (Bexleyheath and Crayford) (Lab)
Referring back to Dr Cox, she said:
“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]
Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?
Naz Shah
My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.
To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.
We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.
Question put, That the amendment be made.
The Chair
I point out that this is an opportunity to discuss clause stand part, not to cover the ground of amendments that have already been debated.
Danny Kruger
I will be quick, Mr Efford. I appreciate that we have been exhaustively over the detail of the amendments. I deeply regret that none of the amendments that were tabled to introduce stronger safeguards has been accepted. I want to take this opportunity to explain briefly what the Committee has done by rejecting those amendments and what we will be doing by agreeing to the clause without the amendments. I will not seek to divide the Committee on the clause, because I recognise that it enables the whole Bill to proceed, as the House wished on Second Reading, so I recognise that the principle of the Bill is represented in the clause. We wanted to tighten it, but have failed to do so.
Jack Abbott (Ipswich) (Lab/Co-op)
I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken.
The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue. I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.
Danny Kruger
I am grateful to the hon. Gentleman for explaining why, having opposed the Bill on Second Reading, he now seems to be supporting it. I wish I had heard, during our debates in the past two weeks, his specific objections to the amendments. If he felt, as he says, that the Bill is not strong enough, we would have welcomed his own amendments to strengthen the Bill in a form of words that he would find adequate. Perhaps that is what we will hear from him.
Jack Abbott
I did articulate a number of times where I felt that some of the amendments were not tight enough in those areas.
Danny Kruger
The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.
I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.
Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.
I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.
The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.
Kim Leadbeater
The reality is that this Bill is both. Of course it is about personal autonomy, choice and dignity for people who are coming towards the end of their life, but it has to be safeguarded as well. It is both. If I may say so, I think that the hon. Member makes quite an unfair characterisation of the robust, powerful debate that has taken place in Committee during the time that we have spent together. I think it has been extremely well informed. People have listened intently to other points of view and opinions, and it does the Committee a disservice to suggest otherwise.
Danny Kruger
We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.
The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.
The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—
Danny Kruger
I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.
Danny Kruger
We have debated that issue; I apologise.
My concern is that the Bill, which is masquerading as a safeguarding Bill but is actually an autonomy Bill, will end in less autonomy for the most vulnerable patients, who will find themselves on this conveyor belt, internally pressured and encouraged to seek an assisted death when it is not in their interests. I invite the Committee to reflect on what we have done, but as I have said, I do not propose to divide the Committee on clause 1 stand part.
Rebecca Paul
Under our current law, assisting someone to commit suicide is a criminal act. Clause 1 of this Bill is where we cross the Rubicon, moving away from well-established principles into a new era in which the state is empowered to help individuals to die.
This monumental decision is one for Parliament in the coming months. However, what we must do on this Committee is bolster the safeguards so that the Bill is truly as safe as it can be. Our priority must always be the vulnerable: those who could be coerced into something that is not in their best interests, and those with no one to advocate for them or protect them, who could end upbeing pushed into a process because that is the easiest and cheapest option for everyone. This law must work for everyone, not just the privileged few.
That is why I am so disappointed that at the end of nearly three days of debate, there has been not one improvement to the safeguards—not one. We asked for amendments to exclude people with impaired judgment and the depressed and suicidal; this Committee said no. We asked to protect those who are unduly influenced or encouraged by others to seek assisted dying—
The Chair
Order. We are not discussing the amendments again now. This debate is about clause 1 standing part of the Bill.
Rebecca Paul
Thank you, Mr Efford. I am perplexed as to why some of the straightforward improvements to the safeguards have not been accepted. That should give us all pause for thought. If everyone here wants this to be the safest assisted dying service in the world, we must learn from other territories and improve the safeguards. Our priority should not be to make the service as accessible as possible, with as few barriers as possible, or to make it as easy as possible for medical practitioners to sign off. Time and again, throughout our proceedings, the importance of autonomy has been given as the reason why amendments cannot be accepted, but surely that must be balanced against what is in someone’s best interests.
It is clear that in other areas of medicine a best interests approach is taken, for example under section 63 of the Mental Health Act 1983, which states:
“The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering”.
A patient can thus be deemed to have capacity, and yet still receive treatment that they have refused, for example in the force-feeding of a young girl with anorexia. Those who argue for full autonomy would no doubt rail against this best interests approach. However, I suggest that it is always worth considering what we would want to happen if it were our daughter.
This is not an easy balance to get right—I completely concede that—but right now the Bill has no best interests component. That means that if anyone inadvertently qualifies for assisted dying but should not, for example an anorexic girl who has refused treatment, there is no safety mechanism to take her out of scope. The amendment tabled by my right hon. Friend the Member for Braintree (Mr Cleverly) would have gone some way to addressing that.
Clause 1 will profoundly change how society views suicide. Data from overseas territories indicates that introducing assisted dying can actually increase the number of unassisted suicides. In Oregon, whose system this Bill is specifically based on, non-assisted suicide has increased by a statistically significant amount. That demonstrates the seismic shift in attitudes that accompanies this, so when we tell our young people that suicide is not the answer and to seek help, we must do so knowing full well that the key message will be undermined by the availability of an assisted dying service, which may be plastered across billboards and advertised on daytime TV.
Rebecca Paul
I thank the hon. Member for his intervention, but I respectfully suggest that that is not the case and there is data. Professor David Paton found a 6% increase overall, and interestingly it was 13% for women.
Kim Leadbeater
I would be interested to know whether that data shows a link or a direct causation effect.
Rebecca Paul
I thank the hon. Lady for raising that point. I think that what has been looked at is the number of unassisted suicides. The hon. Lady makes the good point that obviously we need to look at all the different factors that could be part of that, but I am just making the point that when we look at territories that have introduced assisted dying, we find that at the point at which it is introduced, we generally see, in most territories, an increase in unassisted suicide. I do not think that we should rush to disregard that. We need to recognise that in helping a small group of people at the end of their life, which undoubtedly this Bill will do, there will be a price to be paid. That price will be paid by our young people and other vulnerable groups.
I will not vote in favour of clause 1—I do not think that there will be a Division on it anyway—but I will not oppose it either, for the reasons that my hon. Friend the Member for East Wiltshire set out. I understand that it is the key clause in order for us to progress and continue the debate, which is what Parliament wishes us to do, but I hope that the Committee will be more receptive to improving the safeguards as we progress through the Bill. The amendments really were tabled in good faith. We did our best to write them in a clear way, but obviously the private Member’s Bill process makes that more difficult. This is not a Government Bill, but we are all doing the best we can to table amendments that would improve the safety of the Bill.
Naz Shah
I just have some concluding remarks. None of the amendments was voted for. I feel that in the clause 1 stand part debate, huge opportunities have been missed. I have talked a lot, throughout the debates, about the issues of people from ethnic minority communities. Opportunities were missed to safeguard disabled people and people from ethnic minority backgrounds.
My hon. Friend the Member for Ipswich made a point about amendments being clear, and about ambiguity. The truth is that if the amendments were supported in principle, they could have been tidied up by Government. There are some good amendments that could have been clarified by the Government. In principle, they were good options. I struggle with the whole narrative throughout the debate on clause 1: “Yes, we accept the principle, but we are not going to do it because it is ambiguous or the wording is incorrect.” There is lots of wording that we will debate throughout the rest of the Bill that is not quite clear, and that is the whole point of going through this exercise. Going forward, I encourage us, as the hon. Member for Reigate did before me, to do as we have been doing, with sincerity, in trying to make this Bill the best in the world it can be, as my hon. Friend the Member for Spen Valley intends.
Stephen Kinnock
I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.
Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.
The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.
As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.
Question put and agreed to.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Terminal illness
Danny Kruger
I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
The Chair
With this it will be convenient to discuss the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”.
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert—
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert—
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
Danny Kruger
I said in the last debate that this is either a safeguarding Bill or an autonomy Bill. [Interruption.] Or that it is both, but the claim has been that it is a safeguarding Bill and that there are very strong safeguards. If so, and if we are going to stress the safeguards, as I think we should, that means being very clear about who is eligible. It means having proper, meaningful guardrails showing who is inside and who is outside the scope of the Bill. I suggest that the Bill’s guardrails are not strong, safe or impermeable; they are broken fences. We need to mend those fences in this Committee in order to make the Bill safe.
This group of amendments includes a set in my name that would restrict eligibility to people with terminal diseases or illnesses, and another set that would build stronger safeguards explicitly for disabled people and people with mental disorders. The purpose of the two sets of amendments is the same, but they approach the challenge from opposite ends. I will speak first to the amendments in my name.
Quite simply, I want to remove the words “medical condition” from the definition of terminal illness. The reason for that is straightforward: some medical conditions are likely to also amount to a disability. As Fazilet Hadi, the head of policy at Disability Rights UK, told the Committee in evidence, there is a “huge overlap” between disability and terminal illness. The distinction between the two is notoriously blurred, and there is a reason why no disability rights organisation backs this Bill: it is here in this innocuous phrase “medical condition”. Removing that phrase will provide an additional degree of protection for some disabled people, which I think is a good enough reason to do it.
There is another group of people whom we do not hear from much in these discussions, but about whom we should perhaps be most concerned, because there are so many of them—they are almost all of us. I am talking about the frail. Frailty is an important word in this debate. I refer hon. Members to the briefing submitted in recent days by the British Geriatrics Society; it is a powerful document that highlights an essential challenge for this Bill. What is frailty? Is it a disability? Is it a terminal illness? Is it both? Is it neither? It can be noted on a death certificate as a cause of death and, even if it is not listed as a cause of death—this is a crucial point—it is the most common dying trajectory for people in the UK. More people are frail as they approach the end of life than are not.
Kim Leadbeater
I am interested to know where the hon. Member has got the idea that someone is going to scrap the six-month prognosis from.
Danny Kruger
Well, if the hon. Lady will say that she will never, at any stage, support a proposal to extend it beyond six months, I will be very glad to hear it. My concern is that we already have amendments tabled to do exactly that, which we will be debating shortly. I hope they will be rejected, but my confident expectation, on the basis of other countries, including the Australians who gave evidence to this Committee, is that the six-month safeguard will soon be seen as a barrier to a human right, because there is indeed no logical basis for such an arbitrary date.
The people who currently deal with the six-month prognosis, in the context of benefits and pensions, campaign that it is arbitrary and unworkable—rightly, I think—so I am afraid that I confidently expect the six-month barrier to be challenged in due course. If the hon. Lady is prepared to say that she would never do that, however, I would be very reassured.
Kim Leadbeater
Would the hon. Member agree that the purpose of the Committee is to look at the Bill before us? That is why we are here. I understand his concerns, his reservations and his nervousness about what might happen in future, and that is an important conversation to have, but the purpose of the Committee is to look at the Bill as it stands today; that should be the focus of our deliberations.
Danny Kruger
Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.
My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.
Tom Gordon (Harrogate and Knaresborough) (LD)
Marie Curie’s definition of a terminal illness is
“an illness or condition which cannot be cured and is likely to lead to someone’s death”.
It is obviously one of the best-known end of life charities, so how does the hon. Member reconcile the differences he has with its professional expertise?
Danny Kruger
I am very happy to use the word “condition”—we all use it quite casually, including me—but we are concerned about legislation here. As I explained, if we include the term “medical condition”, courts could interpret that as a development—an addition—to the existing law on terminal illness, which refers only to illness and disease. The courts would be right to conclude that Parliament meant more than illness or disease, which is why it is important to be explicit about what we are talking about: illness or disease.
I think we should remove that term, but if other Members do not, I would like to understand why. The hon. Members for Harrogate and Knaresborough or for Spen Valley might have some suggestions, but I would be grateful if somebody could clarify, explicitly, what is meant by “medical condition” that is not caught by the terms “illness” or “disease”. What are the meanings of the three terms, and why do we have to have “medical condition”? It might well be that there are conditions that would not be captured by “illness” or “disease” that would be appropriate.
Lewis Atkinson (Sunderland Central) (Lab)
On that point, I will quote directly from Chris Whitty’s evidence to the Committee:
“there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to…death”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
From my perspective, it is about that “constellation” where death is clearly going to happen as a result of a combination of different conditions, illnesses or diseases. That it is where that is very clear, and, because of the six-month eligibility in the Bill, we have that nailed down. That is the importance of including the term, because it is not one disease that leads to death; it is the constellation of diseases and illnesses that will inexorably lead to death.
Danny Kruger
I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.
I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.
The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?
Kit Malthouse
Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.
Danny Kruger
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
Kim Leadbeater
I agree with the hon. Member to some degree in terms of the legal drafting. I have been advised that the expression “for the avoidance of doubt” is not generally used in a Bill if the Bill is already clear, which this is—I have been reassured by parliamentary counsel about that—but I was keen, having met disabled people and disability rights activists, to have it very clearly in the Bill that by virtue of having a disability, a mental health condition or a mental disorder, someone would not be in scope of the Bill. It was a very clear drafting decision and I stand by that decision; I think it is the right thing to do so that we are clear who is not covered by the Bill.
Danny Kruger
I am grateful to the hon. Lady; it is helpful to understand her thinking. Her amendment is an attempt to further clarify her purpose, which is to communicate that we cannot have an assisted death only because of a mental disorder or a disability. I know that other colleagues will speak to that point more explicitly.
My point is that
“For the avoidance of doubt”
is a massive signal to the courts that the subsection is meaningless. The advice was right that it is not usual to include that phrase, as it signals that nothing is being added. My concern is that it does not add anything, and the inclusion of the word “only” further demonstrates the hollowness of the protection that it purports to offer. The fact is that someone will still be able to get an assisted death because of a physical illness that derives from a mental disorder or disability. That is my concern with the later parts of the clause, but I will leave other Members to make that point.
Dr Opher
There is a lot to talk about in this group and I thank you, Mr Efford, for calling me to speak. I would also like some confirmation about the term “medical condition”, and I agree with the hon. Member for East Wiltshire that we need to absolutely nail that. I am still to be convinced on the question of a condition that does not come under illness or disease but would come under “medical condition”, so I agree that we need to be very clear about what that means.
Frailty is very often diagnosed in older people and I fear that “medical condition” could be equated with that, which would open up the Bill. We need to decide whether we want to do that. Personally, I would not support that in any way. If this is an opening for that, we need to close it, so I agree with the hon. Member in that respect.
Some of the other amendments do not materially add anything to the Bill. On changing “an inevitably” to “a typically”, I do not think that would change the Bill—in fact, I think it would weaken it slightly, so I would not support amendment 123.
Both amendment 11 and amendment 181 talk about how we can exclude mental health issues as a cause for seeking assisted dying. My personal feeling is that the Bill is strong enough as introduced to exclude that. I point people to clause 2(3):
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health Act 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
I think that is pretty tight; I do not think that people with anorexia could be given an assisted death under this legislation. That is my personal view, and I am happy to be persuaded otherwise if the whole Committee thinks we need to tighten up the measure significantly. It is important to make that very clear so that the Bill cannot be amended away from what we wish it to be. I think all of us would say that we do not want patients with anorexia to be able to access assisted dying—I have not spoken to anyone who does not agree—so the question is how we nail it down in the Bill.
Sarah Green (Chesham and Amersham) (LD)
I have great sympathy with amendment 11 in particular, which is clearly motivated by a desire to ensure that having a mental illness or disability alone does not qualify someone for an assisted death under the Bill. It is worth saying that clause 2(3) already does that and, therefore, the amendment is not necessary. However, the hon. Member for Spen Valley has tabled amendment 181, which further tightens that language. In my view, amendment 181 strengthens the Bill by simplifying the language to make it absolutely clear that a person is not considered to be terminally ill if they have a mental disorder or a disability alone. The chief medical officer, Professor Whitty, encouraged us to keep this simple, and that is precisely what amendment 181 does. Therefore, I support the amendment.
Rebecca Paul
I rise to speak to amendment 11, which stands in the name of my hon. Friend the Member for South Northamptonshire. This is one of the areas of the Bill where we all agree on what we are trying to achieve, so it comes down to making sure that the drafting does exactly what we all intend in order to protect people.
The definition of “terminal illness” in the Bill has two components. The first is that the person has an inevitably progressive and irreversible condition; the second is that their prognosis is less than six months. An issue raised in our evidence sessions is that there is a risk that a person with a mental disorder or disability will meet that definition if they are suffering physical symptoms that mean that they satisfy both parts of the test; a possible example could be a young woman suffering with severe malnutrition as a consequence of anorexia. With respect to the point that the hon. Member for Stroud made, I agree that anorexia on its own would not qualify, but the issue arises when there is a physical manifestation from that disorder such as severe malnutrition or even diabetes, which can co-occur, as we heard in the evidence sessions.
It is clear that that is not the intention of the hon. Member for Spen Valley or anyone on the Committee, as evidenced by the inclusion of subsection (3). I thank the hon. Member for making that point; it is much welcomed. However, in oral evidence, Chelsea Roff said that
“we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 153, Q194.]
Before I get into amendment 11, which aims to address the issue, it is important to understand what clause 2(3) is trying to do. It reads as follows:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both”
of a mental disorder or a disability; it refers to the relevant bits of law. As my hon. Friend the Member for East Wiltshire has set out, the words “for the avoidance of doubt” make it clear that this is a clarifying subsection that does not make any change to the rest of clause 2. It appears to be clarifying that mental disorders and disabilities alone will never qualify someone for assisted dying—I think we all concur with that—unless they also have a physical condition that meets the terminal illness test, namely that it is inevitably progressive and irreversible and that the person has a prognosis of less than six months.
This is where the problem lies. If someone has a physical condition arising from their mental illness, such as severe malnutrition resulting from anorexia, and if the physical condition meets the definition of a terminal illness, they will qualify. As the Royal College of Psychiatrists said in its position statement:
“The wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an ‘inevitably progressive illness, disease or medical condition which cannot be reversed by treatment,’ its physical effects (for example, malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness.”
To remedy the issue, amendment 11 would remove the words “For the avoidance of doubt”, to make this a legally effective clause, rather than just a clarifying one. That means that it is providing an additional safeguard to those with mental disorders and/or disabilities. It would also remove the word “only”, to ensure that a physical condition resulting from a mental disorder or a disability will not make a person eligible for assisted dying. The amendment is further bolstered by amendment 283, tabled by the hon. Member for York Central, which would make it clear that comorbidities arising from a mental disorder do not qualify a patient for an assisted death.
I thank the hon. Member for Spen Valley for tabling amendment 181 to try to address the issue, but I do not believe that would quite solve the problem, which is quite a tricky one. “For the avoidance of doubt” would still be there, as would “only”. The sentence beginning with “Nothing in this subsection” makes it crystal clear that if a condition meets the six-month condition and the rest of the definition, it will be considered a terminal illness. There is therefore no exclusion for physical symptoms manifesting from mental illness or disability, which I think is what we are all trying to get to.
In my view, the only amendment that would address the issue is amendment 11, tabled by my hon. Friend the Member for South Northamptonshire. It would remove both “For the avoidance of doubt” and “only”, and would therefore better ensure that a physical condition resulting from mental illness or a disability does not make a person eligible for assisted dying.
Naz Shah
Sorry, I mean amendment 11. Thank you, Mr Efford.
I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley.
Clause 2(3) states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only”
—I stress the word “only”—
“of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
If amendment 11 is agreed to, clause 2(3) will read:
“A person is not to be considered to be terminally ill by reason of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That may seem a very small change, but it is an extremely important one.
The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.
Kim Leadbeater
This is a really important discussion and I am so glad that we are having it—some brilliant points have been made. As someone who has worked with people with anorexia, I am very aware of the sensitivities of the condition and the issues around it. Would my hon. Friend agree that, as part of this discussion, we have to consider the capacity assessment of people with eating disorders? It is a very serious mental health condition; it would require a lot for somebody with anorexia to pass the capacity threshold for making a decision of this magnitude. It is certainly the sort of instance where I would be very surprised if a doctor did not refer to an eating disorder specialist. Does my hon. Friend agree that we have to look at the condition and how the patient should be cared for holistically?
The Chair
Order. I remind hon. Members that there are a set of amendments in the next group about anorexia. Let us not go too far down this road.
Naz Shah
I absolutely agree with my hon. Friend that there need to be specialists—we will come to that debate later. Let me bring our debate back to the amendment we are discussing. I understand that the Bill is drafted so that people who suffer mental disorders, such as anorexia nervosa, cannot qualify for assisted death—when my hon. Friend the Member for Spen Valley sets that out, I have absolutely no reason to doubt it—but that is not enough to safeguard people with such disorders. As we know, people with anorexia can and have stopped eating until they suffer advanced malnutrition, which is a physical disorder. In some cases, that malnutrition becomes so advanced that doctors will prognose death within six months.
If we wish to protect people with anorexia and other eating disorders, we must rewrite the Bill. We must ensure that people who have those disorders, and who also have a physical disorder, cannot qualify for assisted dying. I must underline that this is not a hypothetical point or some clever objection that has been dreamed up without reference to the real world. It has actually happened—not once, but dozens of times in countries that have assisted dying.
Kim Leadbeater
My hon. Friend is making a powerful point. Does she agree that the reporting and data around assisted dying are fundamental? That is why it is important that, if the law is to change in this country, we get that absolutely right. What we propose in the Bill is closest to the laws in Australia, and in my understanding there have been no assisted deaths of people with anorexia in Australia. However, my hon. Friend makes a valid point about the accuracy of reporting; we do not know whether those examples were people with anorexia who happened to have cancer as well. We just do not know, and that is not good enough.
Naz Shah
I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion.
I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it.
We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it.
I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth.
It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later.
If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill
“only because they are a person with a disability”.
There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?
Kim Leadbeater
In terms of the removal of references to the Equality Act, I was not aware when the Bill was initially drafted that cancer is actually classed as a disability. Given the fact that in some countries 70% of assisted deaths are for cancer patients, it would seem ridiculous to exclude cancer patients from having the option of assisted death. I hope that goes some way towards explaining that point.
Kim Leadbeater
The concepts of a mental disorder and a disability are well understood, and those terms are well used. In the eyes of the law, we would not need to provide a definition of those in the Bill, but the removal of the reference that would include people with cancer is an important thing to do.
Danny Kruger
The fact that cancer is included in the Equality Act definition does expose a concern about the Bill. It suggests that there is a real connection there, which is of concern. I think the solution is to accept the amendment 11 and ensure that disabled people and those with mental health conditions would not be eligible for assisted dying, and then to introduce a further amendment—either now, as a manuscript amendment, or later—to exclude cancer from the definition. That is a tidying-up exercise that could be done in light of the point that the hon. Member for Spen Valley made about the reference in the Equality Act. The most important thing is that we tighten the clause to protect disabled people.
Public Authorities (Fraud, Error and Recovery) Bill (Second sitting)
Tuesday 25th February 2025
(1 day, 17 hours ago)
Public Bill CommitteesPublic Authorities (Fraud, Error and Recovery) Bill 2024-26 View all Public Authorities (Fraud, Error and Recovery) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Chair
We will now hear evidence from Joshua Reddaway from the National Audit Office, and Richard Las from His Majesty’s Revenue and Customs. We have until 2.30 pm.
Rebecca Smith (South West Devon) (Con)
Q
Joshua Reddaway: I guess I am agnostic as to what is done, but the benefits would be an opportunity for governance and an opportunity for accountability, clarity and transparency. I am sure that we would be absolutely delighted to audit the accounts for the PSFA and help to provide some of that transparency. Of course it is currently incorporated with the Cabinet Office, so it is about a clear line of sight. You have to offset that against the fact that there is an administrative burden for producing things like sets of accounts, and having governance and so on. The bigger question, and the one for the Committee, is whether it will enable better oversight of the powers in the Bill.
Rebecca Smith
Having a separate organisation?
Joshua Reddaway: Having a separate body.
Rebecca Smith
Q
Joshua Reddaway: I do not have a major opinion. I would ask whether you are comfortable with the oversight arrangements. One thing to point out is that this will be the closest thing to an anti-corruption unit that the Government have, with search powers. Are you happy with that being constitutionally in the Cabinet Office or not? I am also interested in what the criteria are. The explanatory notes have set out that there will be an efficiency assessment for the powers in the impact assessment. I am not sure the Cabinet Office is clear on exactly what that means. It is interesting to think about what would actually trigger it to exercise that power under the Bill to create it as a separate body.
Rebecca Smith
Q
Joshua Reddaway: In short, yes. Would you like a longer answer?
Rebecca Smith
That would be great.
Joshua Reddaway: First, we should be clear: with most fraud, once the payment has gone, you are not going to get it back. I have a professional next to me who can talk to you about the challenges and the pursuit, but if you ask how much fraud is out there, the answer is a lot. If you add up all the official estimates from the different schemes during covid, it is £10.5 billion-worth of fraud. The Government have so far recovered £1 billion of that, mostly from HMRC and less from others. Of course, HMRC stopped collecting it because it knew that its resources would have a higher return of investment if they were re-diverted back to tax rather than fraud recovery. I am afraid you are always on to a losing game if you enter the recovery phase, but every million counts. It is always nice to get something back.
The covid counter-fraud commissioner has only just been appointed. Their role is to review these schemes and see whether there is a way to get the money back. My understanding is that the six-year time limit under the Fraud Act 2006 will be expiring next spring so, with that timetable alone, if the fraud commissioner is going to bring forward anything that has a chance of working, it makes a lot of sense to give them a bit more time. Like I say, we are really sceptical that it is possible to get the majority of that £10.5 billion back. Some of it will come back from the bounce back loans anyway, but the vast majority of it has gone. But every million counts.
The Chair
Do you want to add anything, Mr Las?
Richard Las: On the covid side of things, we have not stopped our efforts, but we have recognised that we are not going to pursue it as a lead subject. However, we are conducting other inquiries and looking to other taxes. We will be looking at whether there was fraud under the covid schemes, and we will still be pursuing that. I still have a large number of cases going through the courts or heading towards prosecution in relation to the scheme. A bit like Joshua, I am certainly not giving up on it—we will keep pursuing it—but, in a decision on how we deploy our resources, we are saying, “We’ll look to what we think are the higher risks, and we will pick up the covid risks as and when we come across them at the same time.”
The Parliamentary Under-Secretary of State for Work and Pensions (Andrew Western)
Q
Joshua Reddaway: Specifically, do you mean the EVM—eligibility verification measure—stuff?
Andrew Western
All the powers pertaining to the DWP—the five principal areas in the DWP’s proposals—so information gathering, debt recovery, penalties reform, powers of search and seizure, and EVM.
Joshua Reddaway: Okay. To step back, we have been looking at a general trend of rising levels of benefit fraud for a few years. Actually, it has come down a little since covid, because there was a blip then, but if we take covid out, the levels were rising anyway. Currently, it is more than £10 billion, if you include the bit of benefits that HMRC pays—obviously, that is coming down with universal credit.
I do not think that what is in the Bill will solve that; what is in the Bill will support tackling it. This is about adding a few tools to the DWP toolkit. The key thing is that prevention is better than recovery. DWP is really good—one of the best in the world, as far as we can see—at knowing how much fraud is occurring; I am afraid it is not very good at saying why it occurs. In particular, DWP is not great at saying what it is about the way in which it administers benefits that enables fraud to occur or error to happen.
For some time, we have been advocating for DWP to get a much more granular view of its control environment. I think that, given how I interpret the capital rules here—it is an EVM exercise—it is doing that. This is one of the places where DWP said, “Actually, our control over capital at the moment is, frankly, to ask people how much capital they have,” which left it fairly exposed to the risk that people did not tell them the truth. Several times, the Public Accounts Committee asked DWP if it had the powers it needed, and several times has said, “The one area we need to explore is capital.” The challenge for this Committee is to work out whether that proposal is reasonable and includes enough oversight, given the privacy issues. In terms of there being a real problem behind it, however, I can confirm that there is a control-level issue that DWP is trying to resolve.
The other issues that the Bill tries to deal with on enforcement are similar. If we look at the impact assessment, the EVM was £500 million a year when fully rolled out and operational—that is a significant dent, but only a dent, in the £10 billion. I want to be clear: yes, I do think that there will be an impact. Is it sufficient? No. Is it meant to be sufficient? I doubt it. I think that DWP knows that, and that it has a very hard slog ahead of it. I will try to hold it to account—I am afraid it is your Department—on that hard slog of understanding where fraud is coming in and where error is happening, and put in controls step by step to improve it. There are no shortcuts in that.
Richard Las: My reflection is that fraud is inherently difficult to identify and potentially more difficult to investigate at times. How do you identify fraud? If I think about HMRC, you need information and to be able to triangulate information to understand the risks in front of you so that you can identify the highest risk. Sometimes you will not know what that risk is, or whether it is fraud or error, but it will point you in a direction. I feel that as an agency, if you have fraud, you need a good bedrock of information to understand the environment and to identify risk. A lot of that information can be information you gather from your customer—in our case, a taxpayer—or third party information. It is information that we can use to triangulate and verify. We do that regularly with lots of different information sets.
Once you come to investigate and deal with fraud, it is obvious to everybody, but people do not always co-operate, so you need powers that allow you to compel people to co-operate or powers that allow you to secure information and evidence in a way that you otherwise would not be able to do, because people would not do that. On the general framework, we are always looking to improve our basis for powers and our ability to use them. Certainly I feel that much of what is included in the Bill is powers that HMRC already has in many respects. We use those powers, we would argue, in a proportionate and necessary way, and there are controls and safeguards about how we do that. It is a difficult business with fraud. If you do not have some of those tools at your disposal, you are working with one arm behind your back.
Andrew Western
Q
Joshua Reddaway: Is there an alternative? I am aware that DWP is thinking about open banking as an alternative, but that, of course, would have wider implications and at the moment is on a voluntary basis. You have got that.
I honestly think that it fundamentally comes down to this: if you want to be able to detect, and if Parliament has set an eligibility criterion of capital as part of universal credit and some other benefits, DWP can either use that as a kind of symbolic deterrent so that you can opt out by owning up that you have that capital—that has a use—or if you want it to actually be enforced, you have to provide DWP with a tool that goes a bit further than just asking. There are various ways that you can get data matching from various different partners. This is the one that the Government have come up with.
Andrew Western
Q
Richard Las: It is the Finance Act 2011 that you refer to, which allows us bulk data gathering powers on information that we believe will support our functions. I guess it is not just the banks, but we do get the information on interest-bearing accounts. It is an annual exercise, not a real-time exercise. It is clearly timed in such a way that it helps us understand whether the right amount of tax has been paid on interest that has been accrued. We are talking about large accounts because in most cases people’s interest is quite small, but there will be some people who get a lot of it. We have a huge amount of controls over how we manage that information and how we use it and protect it; they are our normal requirements as with any other taxpayer data.
We gather other information from third parties. We have information from merchant acquirers on transactions that businesses might make, for example. We also have information that we get from online platforms in terms of sales and things like that. It is all part of bringing that information together. HMRC very much respects taxpayer confidentiality and manages that data responsibly. I guess those safeguards can exist in other organisations.
Andrew Western
Q
Richard Las: I do not know, if I am honest, whether there is. I can look that up for you.
The Parliamentary Secretary, Cabinet Office (Georgia Gould)
Q
Joshua Reddaway: I think you are referring to the report we did in March 2023, after the PSFA had just been established. We very much wanted it to be a baseline for the challenges it was trying to deal with. We basically said that there needed to be a cultural change across all of Government, that 84% of the resources were in DWP and HMRC, and that covid really exposed that the Government did not have the capability in other Departments. I have to say that, from our point of view, we saw fraud as essentially a welfare and tax issue for many years, so it was a bit of a surprise to start bringing it out to the other Departments a bit more.
I would interpret the Bill as being about giving the powers, particularly on the enforcement side, and in the meantime, the PSFA has been doing quite a lot on the prevention side. The prevention side is primarily where I would be focused because that is where the biggest gains are to be had in dealing with the cultural changes that are needed across all of Government. Mind you, I do not read the Bill as being against that; I see it as supplementary.
We would be very disappointed if the PSFA became exclusively an investigation and enforcement-type agency. The impact assessment thinks it can get roughly £50 million over 10 years from enforcement. Like I say, every million counts, but that is very tiny compared with the challenge that the PSFA is trying to meet. Is that the sort of thing you are interested in?
Georgia Gould
Q
Joshua Reddaway: It is not rare to find what we call audited bodies, Government organisations, that have found a fraud, have taken it as far as they can through their internal services, and have tried to hand it over to the police to make an arrest—this is the point where it is outside audit—but have not been able to find anyone who will pick up that file, which has been fairly developed. The point that we raised in the 2023 report and that the PSFA was trying to deal with was: how can you get an organisation that fills the gap to help defend the Government when they get attacked? The police are basically going to say that Government are big enough and ugly enough to look after themselves on this.
When we looked at fraud more widely across society in a report that we did later in 2023, we found that at that time it was 40% of all crime and 1% of police resources. That is what you are trying to tackle here. You are trying to have an organisation that fills the gap on enforcement. How important is that? I think it is about having a deterrent, and if you get it right it should also be about root cause analysis. By that I mean, if you have an investigation and you are able to fully investigate it, it is not just about prosecuting that person, but about properly understanding why that happened in the first place, and improving it. So if you are an organisation that is outsourcing an investigation to another party, I always wonder a bit whether they will do that bit of the loop. I am hopeful that the PSFA will develop the capability to do that.
Georgia Gould
That is a very helpful challenge.
Joshua Reddaway: That is my understanding of this. Our one concern is, please don’t let this be the tail that’s wagging the dog.
Siân Berry (Brighton Pavilion) (Green)
Q
Joshua Reddaway: Interesting. The reason we always talk about error and fraud together is because it is often really difficult to differentiate between them when you are doing prevention. So, in my job, I am more interested in fraud and error together because I am more interested in how to correct that and stop the money going out. If you are in Richard’s job, as I am sure he will tell you in a second, he is going to be more interested in the one that you can prosecute—to an extent.
Richard Las: I am happy to jump in from an HMRC perspective. It is important to understand what the driver is—I think that is absolutely right—and to be able to distinguish between fraud and error. We have estimates for fraud and error in terms of the tax system, which we publish every year. We generate those estimates for a lot of different activity, but partly they are the result of our own inquiries, so we are analysing what we do and what we see. We make a judgment—is it fraud, is it error?—and we work out what is going on. Absolutely, you have to look at the underlying reasons, so if there is an error, a repeated error, you ask what is going on there—what is the cause of it? Certainly, as we develop our business in HMRC—especially with people filing online—we are very much looking to prompt people so that they can get the right answer. Those of you who do self-assessment hopefully will see that yourself—“Are you sure? Is this information correct?” That really does help in reducing errors—the simple errors that people might make, because it is complicated.
Siân Berry
Q
Richard Las: Potentially. But it goes both ways, often. Sometimes people overpay as well.
Joshua Reddaway: If you are looking at a particular case, normally the first thing you detect is that it is wrong—the transaction is not correct. You then have to take it to a certain level before you can work out, on the balance of probabilities, what it is. In tax world, is it evasion or avoidance? Then you go down a different route, depending on how you are dealing with it. Obviously, if you want to go for a prosecution, you have to have much more evidence and you have to be beyond reasonable doubt to go there.
I think the reason why PSFA often deals with both is that it is at that earlier stage of dealing with prevention, and it is not always clear which one you are dealing with; besides which, we want to stop error as well. My job is to definitely try to stop both, through audit and accountability. I think where it does not make sense for PSFA to get involved is where that fundamental responsibility for correcting the control environment belongs with the Departments. So if you see that as a, “They have done that triaging; they now think that it’s fraud,” you need an enforcement capability and you go down that route, but I would be very disappointed if that meant in that triage process that an error was not being dealt with. Does that explain?
Siân Berry
Q
Joshua Reddaway: I am saying I do not think this Bill is about that issue.
Siân Berry
Okay. Even with that title?
Joshua Reddaway: Even with that title.
Neil Coyle (Bermondsey and Old Southwark) (Lab)
Q
Joshua Reddaway: On how much fraud is created?
Neil Coyle
Q
Joshua Reddaway: Is this the behavioural effect?
Neil Coyle
Q
Joshua Reddaway: I have not done anything that adds to the information that is already in the impact assessment. I have not audited it, so I would just point to the numbers in there. I know there is an issue around whether people will split their money between multiple bank accounts. Is that also part of what you are referring to?
Neil Coyle
Yes.
Joshua Reddaway: I have spoken to DWP and the OBR about that. My understanding is that frankly it is an area of uncertainty, and that they wanted to make an adjustment because they knew there would be an effect but they do not know what that will be. We will have to come back and see what that is.
For me, the more fundamental point is that this power will not stop all fraud. It is designed to stop some. Will there be behavioural effects that will limit that? Yes. Does that in itself mean you should not try? No.
Neil Coyle
Q
Joshua Reddaway: My first instinct is that I would ask DWP how it was going to do that, because that is how the wonderful world of audit works.
Neil Coyle
Of course.
Joshua Reddaway: Secondly, I would suggest to them that they can establish a baseline, because this is pretty transparent within their published statistics. You have got a breakdown there of how much fraud is caused by people mis-stating their capital. The reason DWP is able to do that is because when you apply for a benefit, you do not have to provide your bank statements, but when you are subject to an inquiry that informs the statistics, you do have to provide your bank statements. The statistic is generated by the difference between those two processes. That will continue to be the case after this power is enacted.
Andrew Western
Q
Joshua Reddaway: I think that is a fair comment, given that I said it does not really deal with error. I was really referring to the enforcement powers under PSFA. I think PSFA do other stuff that is in the error space, but the enforcement stuff is not. The enforcement stuff for DWP also will not really be in the error space. However, you are quite right that any data matching is an opportunity to detect error, and DWP are used to that. For example, when they are doing targeted case reviews, that will be detecting error as well as fraud. What we know from the statistics is that DWP believes there is more fraud than error in that space, but I entirely accept the premise of your question, and I should have made that part clear.
Andrew Western
Q
Richard Las: Ultimately, it allows us to operate immediately and with real clarity. We would be under the same kind of governance and restrictions as the police would be, in terms of having to go to a court to get those warrants, but, in terms of our ability to—
The Chair
Order. We have come to the end of the allotted time. I thank the witnesses for their evidence, and we will move on to the next panel.
Examination of Witness
John Smart gave evidence.
The Chair
We will now hear oral evidence from John Smart, formerly partner for forensics at Ernst & Young, who now sits on the Public Sector Fraud Authority’s advisory panel. We have until 2.50 pm.
Mike Wood (Kingswinford and South Staffordshire) (Con)
Q
John Smart: I think being fully independent would probably be helpful, although I suspect that the realistic impact of that will be more theoretical rather than practical in the short term. Maybe, in the longer term, a fully independent, stand-alone organisation would be much more helpful.
Mike Wood
Q
John Smart: That needs to be determined in terms of the overall governance structure of the organisation, as and when it is set up, because it would clearly need to have an independent board, and some of the oversight powers proposed in the Bill would need to be independent of the management of that business. I think it would require quite a lot of thought around the overall governance structure, the way it operates and the way that the day-to-day management of the business is independent of the oversight powers.
Mike Wood
Q
John Smart: As you say, the nature of the investigations that will be carried out by the PSFA will be quite different from those being carried out by the DWP. Certainly, the proposal in the Bill is that investigations that require some form of search warrant will be carried out with a police officer present, and therefore the powers that are being given to DWP in relation to this Bill will already sit with the police that will accompany any investigators that are doing work on behalf of the PSFA. That is my understanding.
Mike Wood
Based on your experience with the PSFA so far, is that consistent with the length of time that, in most cases, it takes such organisations to reply to requests for information?
John Smart: The consistency question is an interesting one. I think a lot of those powers are likely to be applied specifically in relation to banks and telecoms companies. They already have procedures in place to respond to requests for information, and therefore, in the majority of cases, my suspicion is that those short timeframes will be consistent with what they normally deal with, so there will not be a big onus on them to change the way they normally operate.
Mike Wood
Q
John Smart: They are not, no. I do not know which institutions are likely to be required to provide information. There will be individuals and institutions. Other institutions might find it more difficult, but there is an appeals process, which they can apply to use, in relation to provision of information. If it is unreasonably onerous, I suspect it will mean that the timescale will be varied.
Mike Wood
Q
John Smart: That is true. I have spent 35 years investigating fraud, and the challenge is that there is a need to be reasonably speedy in doing those investigations because, as we heard earlier, any recoveries are going to be much reduced if there is a significant delay in carrying out the investigation and applying for either criminal or civil proceedings to take place. Therefore, speed is important in any investigation. Otherwise, you are spending a lot of time and effort without getting the result you need.
Mike Wood
Q
John Smart: I think weeks is reasonable. A small number of weeks is a reasonable number to look for, rather than days or months. Months is far too long, and days is probably a little too short in relation to the ability of organisations to respond.
Andrew Western
Q
John Smart: At the risk of echoing what has been said before, I think it is critical that we modernise the approach to fraud, and the Bill is a good step towards that modernisation. The critical part of a lot of investigations now—and of identifying, preventing and detecting fraud—is the use of data. Getting that data and information quickly and effectively is critical. I think the Bill will go a long way towards speeding up and broadening the available information that can be used to prevent, detect and prosecute fraud. That is a really valuable thing that we should be pushing for, because relying on pieces of paper to seek information from organisations is crazy in this day and age, when you can do it electronically and get an answer relatively quickly. If you are turning up with a piece of paper, it can take weeks or months.
Rebecca Smith
Q
John Smart: Having worried about this for a number of years, I think there are a lot of steps that the Government—the PSFA—can take over time, but we are on a ladder to get to a position that is constantly moving because the fraudsters are developing all the time. One critical thing that I have been concerned about for a number of years is the use and sharing of data across Government. Government have so much data available to them, and third parties have a lot of data available to them. There is clearly a privacy question that rapidly comes into play, but from my perspective, if the data is available to Government, they should use it. They should use it proportionately: they should not exploit those powers to use that data on some sort of phishing trip, but if there is evidence that fraud is being or has been committed, getting that evidence in the hands of investigators quickly is critical to preventing the fraud from continuing and to identifying and recovering any money that has been lost. To my mind, there is quite a lot of work still to be done on data sharing across Government.
Rebecca Smith
Q
John Smart: Absolutely. There are two points to make. The first is that that frauds that are already happening would be identified if the data was shared more effectively and quickly. Secondly, by joining up data that is sitting in Companies House, the licensing authority, or wherever, you can find evidence that a fraud is being carried out and prevent frauds from happening in the first place.
Rebecca Smith
Q
John Smart: An obvious example is the United States; there is an interesting case in point at the moment, which I have dealt with quite a lot. The US has whistleblower reward legislation in place, which is very effective at flushing out issues affecting payments made by Government. Their qui tam legislation, as it is called, flushes out frauds by incentivising whistleblowers to blow the whistle. It creates a lot of work for various organisations, but it encourages people to think about whether fraud is being committed against the Government in the US. That is an obvious piece of legislation that might be worth considering in this country.
Georgia Gould
Q
John Smart: That is a big question. I have been involved with the Cabinet Office for over 12 years, so the inception of the PSFA came about while I was working there. In the 18 months since it was formed, the PSFA has gone a long way to reach a better understanding of where the issues sit across Government. Clearly, it plays best outside the DWP and HMRC. My passion has been identifying where fraud is taking place, which I have worked on for the past 10 years, and trying to quantify the fraud occurring within Government. As you all know, that is very hard to quantify because it is hidden and therefore unknown. The PSFA has gone a long way and is continuing to flush out where resources should be committed to preventing, investigating and deterring fraud across Government outside HMRC and the DWP. That is critical. When I first started asking Departments where frauds were within the Departments, they replied, “There’s nothing to see here.” At least now, particularly because of the work the PSFA has been doing, there is recognition that there is a real issue to be addressed, and that it is not just expenses fraud, or whatever they used to think it was.
Georgia Gould
Q
John Smart: As we said earlier, the larger organisations will be geared up to provide the information within the timeframe required. Some of the smaller organisations might struggle to meet that 10-day requirement, but I still think it is a reasonable starting point. If you do not start with a reasonable starting point, for the larger organisations you end up deferring decision making and action being taken. I think 10 days is reasonable.
Georgia Gould
Q
John Smart: Exactly. That is the reason for the starting point.
The Chair
If there are no further questions, I thank John Smart for his evidence, and we will move on to the next panel.
Examination of Witnesses
Eric Leenders and Daniel Cichocki gave evidence.
The Chair
We will now hear oral evidence from Eric Leenders and Daniel Cichocki, both from UK Finance. We have until 3.10 pm.
Mike Wood
Q
Daniel Cichocki: A number of conversations with the industry have taken place since the measure was announced. We have been very clear since the announcement was made that we are supportive of the efforts to tackle fraud and error in the public sector. We recognise the scale of the challenge that the Government face, and as a private sector we see clearly the damage fraud does to both the public and the private sectors. We are very supportive of the objectives of the Bill. As you say, the key thing for us as a sector that is heavily regulated, both from a vulnerable customer treatment stance—my colleague Eric Leenders is best placed to talk about that—and a financial crime compliance perspective, is that more detail on the specifics of how the measure will work is still to emerge through the code of practice, but extensive conversations about that are under way.
From the banking industry perspective, we are keen to ensure that the compliance requirements for banks are clear in terms of what information is required. We hope to see in the code of practice, as soon as is practical, details of the specific criteria against which the Government will mandate banks to perform checks under the measure.
Mike Wood
Q
Daniel Cichocki: We are awaiting more detail. We have high-level indicators that the Government are likely to use the measure to require banks to perform checks against, which gives us some sense of the scale. Our initial assessment is that it is likely to be significant, but the key thing for us is to have more details of the criteria that the Government will require us to check against under the measure.
Mike Wood
Q
Daniel Cichocki: It is quite difficult at this stage to perform that level of assessment, partly because so much detail of the measure will be set out in the code of practice. We are obviously very keen to ensure that the expectations of the industry in complying with the new requirement are proportionate, but that is difficult to assess in detail before we have seen the detail of the code of practice. Much will depend on the mechanism through which banks will be required to share the information, the frequency of the information notices, whether the criteria we are required to run the checks against change over time and other factors that will influence how much capacity is required from the banking sector. As I say, at this stage it is challenging to do a detailed assessment.
Mike Wood
Q
Daniel Cichocki: Certainly. The banks share very significant amounts of information with Government Departments and law enforcement to ensure compliance with measures to tackle economic crime. We take that very seriously. We also continue to share extensive information with the Director of Public Prosecutions where there is suspicion of fraud. There is certainly an existing set-up to respond to information requests.
There is a difference with this particular measure, though, and we are keen for it be considered. This request is for information to tackle both fraud and error. A lot of the information sharing that we as an industry currently do with elements of law enforcement is very much focused on suspected fraud, economic crime and serious and organised crime. This is a slightly broader measure, so we are keen to see in the code of practice a very clear set of requirements for banks to comply with. The infrastructure is certainly there.
Mike Wood
Q
Daniel Cichocki: A variety of powers exist to date. Some have time measures built in for compliance with them and some are voluntary. I think you have to ensure that this particular power is balanced against all the information sharing that the industry is currently required to do with both Government and law enforcement. For example, it must be balanced against the voluntary sharing that the industry is doing, particularly with law enforcement. Certainly, those of us working in economic crime are primarily focused on how we can work with Government and law enforcement to tackle serious and organised crime. Striking the balance between the additional requirements under this power and that effort is an area of focus on which we have also been engaged with the Government.
Mike Wood
Q
Daniel Cichocki: Given that the eligibility verification measure is one of the more extensive powers in the Bill, we think that it may be appropriate to require the Minister to attest that its use is proportionate, as is required with the other measures in the Bill. That is just because of that particular power’s scale in requiring banks to share information on both potential fraud and potential error. As it includes the sharing of information of customers who may not be suspected of any crime whatsoever, we think that it would be helpful if the Government were to articulate that their use of the measure is proportionate, as is the case with the others.
It would also be helpful if the Bill were to replicate the very effective Proceeds of Crime Act 2002 exemption, which exists within the eligibility verification measure, in the other measures across parts 1 and 2 of the Bill. That is simply because we do not think that it is necessarily proportionate or helpful for banks to be considering, in complying with legislation, whether they should also be undertaking a suspicious activity report for the authorities. One of the constructive conversations that we have been having with Government is how we delineate our responsibilities to comply with this legislation and our responsibilities to comply with financial crime measures. We will be writing on this in more detail, but we suggest that the exemption under the eligibility verification measure, which is very helpful, should be replicated in other elements of the Bill.
Andrew Western
Q
Daniel Cichocki: We are making this suggestion because under the Bill banks responding to an information request or a direct deduction order, would have to consider whether there is some indication of financial crime that under POCA requires them to make a suspicious activity report. We think it is simpler to remove that requirement, not least because where there is a requirement to make a suspicious activity report there is a requirement to notify the authorities; clearly, there is already a notification to the authorities when complying with the measure. Removing that requirement would avoid the risk that banks must consider not only how to respond to the measure but whether they are required to treat that individual account as potentially fraudulent. We are trying to manage risk out of the system more broadly with financial crime compliance, so we think it is much more proportionate and effective to simply apply the same exemption across all the measures in the Bill.
Andrew Western
Q
You briefly mentioned direct deduction orders. I know you have some concerns about the debt recovery power, and this is an opportunity for you to set them out. Is there anything you want to elaborate on beyond what you have just said about that element of the powers we are proposing?
Eric Leenders: There are two or three key areas for us. First is the affordability assessment. I think you have heard previously that the use of the standard financial statement would be helpful in outlining essential monthly expenditure. I will come back to that point.
Secondly, I believe the caps differ between the PSFA and the DWP. We think that they should be aligned, with the PFSA’s 40/20 split also applied to the DWP. It is also quite important that there is some form of de minimis, so that individuals do not find themselves without any funds whatsoever. Our thinking is something aligned to the £1,000 threshold that there is in Scotland. HMRC has a threshold of about £5,000, or £2,000 for partners paying child maintenance. We think there should be a floor, but more essential is consideration of one month’s essential expenditure. That would allow the individual to readjust their expenditure in the period when they need to consider making the payments under the deduction order, or indeed the period in which the balances are withdrawn.
Andrew Western
Q
Eric Leenders: We would like to consider a specific de minimis. There are probably two approaches: an absolute amount or a relative amount, dependent on the individual’s essential expenditure—not their lifestyle expenditure. That is why we feel that the standard financial statement would be a useful tool.
Siân Berry
Q
Going back to Daniel’s earlier comment, can you clarify that you do not yet have a clue regarding the volume of requests? Have you been given some sort of estimate by the Government?
Daniel Cichocki: Let me take that first. The Government set out two broad criteria pertaining to the eligibility verification measure: the capital check and the check against abroad fraud, through assessment of transactions abroad. It is difficult at this stage, because the industry has not undertaken any detailed collective analysis of the criteria against the current book of customers. That work has not yet been done. We anticipate it being done through the development of the code of practice, but key for us is understanding exactly what criteria we will be required to run, and then banks can start to build an assessment of how that looks against their current book. That detailed work has not yet taken place.
Siân Berry
Q
Daniel Cichocki: I do not think we take a view on the scope of individual benefits for which this is applied. The key principle for us is that where there are changes to the eligibility criteria, we are required to check that there is proper public consultation around those changes and an appropriate implementation period for any of those changes, and that those changes are not too frequent. As an industry, we have to build a system to run these checks every time, and every change will have to be built and tested. For us, it is more about the principle of the frequency and appropriateness of the changes. The broader debate around what is in scope is not one we have taken a view on.
Siân Berry
Q
Eric Leenders: Certainly. I will just build on Dan’s point regarding change requirements, to give a picture of the timespan involved. Typically, a change would involve the build—IT systems change and training, which is policy and procedures. We would also need to think about communications, including potentially into terms and conditions for the legals that sit around that. We would want to build monitoring systems to ensure that we have conformance and some form of review process. We have a three-line defence model, where the business runs the business, the second line checks the business, and the third line checks the checkers, so to speak. We then repeat that cycle. Putting that in place takes some time, which rather illustrates Dan’s desire for fewer changes and additions, because all of that would need to be considered.
The point on vulnerability is very well made. There is a slight health warning in my comments, because the Financial Conduct Authority is due to publish findings from a thematic review imminently, as I understand—within the next couple of months. The broad drivers we adhere to that they identify are around financial resilience—we touched on that point a little earlier—and physical and mental strain. There are potentially some mental strains for individuals who feel they may be under suspicion, particularly where those prove not to be founded. Life events are critical now—key in affordability, typically the driver for financial difficulty, and also capability. There are various measures, but as an industry we typically would work to a reading age of nine to ensure that the UK population understands the communications that they receive. In building out the guidance, it would be very helpful for a period of consultation so that we can get into the detail and forensics around those points.
Siân Berry
Q
Eric Leenders: It would always be within the gift of a consumer to open a separate account. They can then ask for the benefit to be paid into that account. There might be a risk, from a wider perspective, that potentially attorneys and landlords might no longer want to receive benefits directly because of the potential admin burdens through this Bill. I flag that as a consideration. I do not think it is necessarily a show-stopper but certainly it is something that I think from a vulnerability perspective we need to be alive to, because that might be an additional responsibility on a vulnerable person, for example, to pay the rent.
Georgia Gould
Q
Daniel Cichocki: The key thing for us now, as I said in relation to the DWP measures, is to start to look at the detail of the draft regulations and the code of practice that sit behind the powers, which we look forward to engaging on. Our broader observations are more on the DWP side. Across both elements of the Bill we welcome very strongly the independent review processes that have been built into the powers. We think the scope of those reviews could just consider some of the other factors that we know have been raised as questions around these powers. For instance, could there be more direct scope for that independent reviewer to consider the impact of some of the unintended consequences on vulnerable customers and the cost of compliance? Those are just some broader points on the independent review, but I think the principle of having one across both elements of the Bill is important.
Rebecca Smith
Q
Daniel Cichocki: In terms of broad principles, obviously wherever there is additional legislation and regulation on the sector, we would hope that that is proportionate. We anticipate doing further work with the Government to help to support the impact assessment as a result of the more detailed work when we see the draft code of practice, when we are better able to understand the methods through which this information will be shared, the practicalities of how it works, and the scale at which the powers will be used. We therefore anticipate more work being done around the impact assessment.
We would hope and anticipate that the Government would recognise that the impact on the private sector needs to be proportionate. As well as the cost implications around resource, this is also around prioritisation. To my earlier point, many of the teams that will be complying with this legislation will currently be complying with the broader legislation and regulation that we have in place, sharing information with the Government and law enforcement, and ensuring proportionality of how that resource is deployed. Certainly from an industry perspective, as a broad principle, we would see it as appropriate and desirable for much of that resource to be focused on serious and organised crime in the round.
Eric Leenders: I have a couple of brief points. First, one consideration is congestion. There is quite a crowded mandatory change stack, as we call it. There is a sequence of changes in train that firms are already implementing. Secondly, to your specific point about the cost-benefit analysis, we recognise the challenge that the cost will be direct, as in the build costs that we have just summarised. The benefits—reducing and deterring criminality generally, and perhaps even preventing it—are perhaps more indirect. I suppose that leads to another point: the extent to which we need to be thoughtful about circumvention and how to ensure that the legislation is suitably agile, so that bad actors cannot game the system no sooner than it has been introduced.
The Chair
There being no further questions, I thank our witnesses for their evidence. We will move on to the next panel.
Examination of Witness
Ellen Lefley gave evidence.
The Chair
We will now hear from Ellen Lefley, senior lawyer at Justice. We have until half-past 3 o’clock.
Rebecca Smith
Q
Ellen Lefley: It is right that the bank power, which is the eligibility verification measure, is separated out in terms of proportionality because, just to clarify, it is important that the other powers of information, search, entry and seizure, which are extended by the Bill to the PSFA and to DWP, all contain that threshold form of words of needing “reasonable grounds” of suspicion or belief. That threshold for the exercise of state power requires reasonableness and objectivity—for there to be something there. That rule-of-law barrier prevents fishing expeditions and state intervention in people’s lives when there is simply nothing to it.
Any such form of words, however, is missing from the eligibility verification measure, which is why the privacy concerns and the concerns about the proportionality of the measure have been so concentrated. Justice is concerned about the proportionality of the measure precisely because it does not have that threshold of reasonable suspicion and because of the vast numbers that could be subject to it, albeit that the state pension has been taken out of scope—it was in scope before, under the almost-equivalent measure in the Data Protection and Digital Information Bill last year.
The concern is with the broadness of that power, the lack of a threshold and the fact that the fundamental right to privacy is involved. We all have a right to privacy, and we all have a right to enjoy our privacy in a non-discriminatory way, and that is the further issue that I would raise. I am sure that others will raise this today, too: the almost inevitable disproportionate impact that those financial surveillance powers will have on people who are disabled. There has been no equality impact assessment for this Bill, but there was for the previous one—not that it was released, I think, but it was the subject of a freedom of information request and I had sight of it. It revealed that, even though about 23% of the population at large are disabled, that figure is about 50% for the benefits-receiving population. There is that prima facie disparity. The financial privacy that is enjoyed by citizens of this country and people who reside here is less protected for disabled people than for others. That very much needs to be proportionate and justifiable, given the fundamental rights that are engaged.
Rebecca Smith
Q
Ellen Lefley: Reassurance cannot be the word, unfortunately, given the moment we are in, which is one of increasing automation and increasing investment in data analytics and machine learning across government. Last month, I think, we had a Government statement about mainlining AI into the veins of the nation—that includes the public sector. Knowing that that is coming and having a clear focus on how the functions in the Bill will be operationalised need to be a key concern.
The preservation of human intervention in decision making might have been a statement that has been made, but it is not on the face of the Bill. Indeed, we need to remember that the Data (Use and Access) Bill, which is also before Parliament, is removing the prohibition on fully automated decision making and profiling. That is happening concurrently with these powers. In addition, over the years, there have been numerous Horizon-like scandals that have happened in the benefits area. One, quite close to home in the Netherlands, was a childcare benefit scandal, which Committee members will know of. In that scandal, recipients of childcare benefit allowance in the Netherlands were subject to machine-learning algorithms that learnt to flag a fraud risk simply because of their dual nationality. So there is a problem here. Even with the powers that are subject to reasonable grounds, we need to have a wider discussion as to what reasonable means and what it definitely does not mean when we talk about reasonable grounds of suspicion, when suspicion is an exercise that is informed in a tech-assisted and technosocial decision-making environment.
Justice has some suggestions as to how reasonable grounds can be better glossed in the Bill in relation to generalisations and stereotypes that a certain type of person, simply because of their characteristics, is more likely to commit fraud than others. Perhaps it could be recorded in the Bill that that definitely is not reasonable.
Some useful wording from the Police and Criminal Evidence Act code of practice A is not in the Bill because it relates to the power to stop and search, which is not being given to DWP officers, probably rightly and proportionately, but some explicit paragraphs in the code of practice for stop and search for police officers say that they cannot stop and search someone based on their protected characteristics. Under the Equality Act 2010, they cannot exercise their discretion to stop and search someone due to generalisations and stereotypes about a certain type of person’s propensity to commit criminal activity. Amendments like those could strengthen the Bill against unreasonable, but perhaps not always detectable suspicions being imbued by machine-learning algorithms. Of course, if there will always be a human intervention in the decision-making process, perhaps that could be explicitly recorded in the Bill as well.
Andrew Western
Q
Ellen Lefley: They make up a larger number of the cohort, so we would analyse a prima facie indirect discrimination potential risk there, which would then need to be justified as being necessary and proportionate. The proportionality assessment of course is for Parliament, but we consider that a significant amount of scrutiny is required not only because of the privacy impacts, but because there is that clear indirect discrimination aspect. I am not alleging direct—
Andrew Western
Q
Ellen Lefley: Raising the risk of indirect discrimination when you have cohorts of the population that are disproportionately reflected in any subcommunity of the population that will be exposed to any power is a relevant consideration, so yes in that respect. When it comes to the eligibility-verification measures, the proportionality analysis is, in our view, strained because there is not that threshold of reasonable suspicion. The mere fact that benefits recipients are in receipt of public funds makes them subject to this power. Of course, that could go further; all the public servants and MPs in this room are in receipt of public funds. If that is the threshold that we as a society are happy with, some real scrutiny of its proportionality is required, because it is a power that can require private financial information.
Andrew Western
Q
Ellen Lefley: When I speak about proportionality, the degree of loss is relevant, but there is no question but that the economic wellbeing of the country is a legitimate aim. On whether measures are proportionate to achieving that aim, we must consider not only whether there is any reasonable suspicion, but the degree of external oversight. The Bill includes that consideration, and there are various ways in which some of the powers are subject to independent review.
We have some suggestions as to how those independent review mechanisms can be a stronger safeguard and therefore make the measures more proportionate. For example, the independent review mechanisms seem to have the ability to access information but no power to demand it. That raises a query as to transparency and the full ability of the independent reviewer in different circumstances to meet their objectives. Also, when an independent reviewer lays their report before Parliament with recommendations and those recommendations are not going to be adopted, it might be helpful for there to be an obligation on the Department to provide reasons why not. That would be a more transparent way of ensuring that the oversight measure is as effective as intended.
Sally Jameson (Doncaster Central) (Lab/Co-op)
Q
Ellen Lefley: On the £35 billion figure, I think the benefits fraud and error figure was around £10 billion, and I think £7 billion can be shown to be fraud. I am sorry if I have got that wrong.
Andrew Western
Q
Ellen Lefley: I am grateful. It is a difficult one. For example, we could have almost zero crime in this country if everyone’s house had 24/7 surveillance installed. There will always be a way of decreasing privacy to increase state surveillance and therefore reduce unwanted behaviour, but the balance needs to be struck. Justice’s view is that when the state is getting new powers to investigate people’s private affairs, the balance is struck by having that reasonable suspicion threshold, which requires reasonable grounds for believing that a crime has been committed. That ensures that the powers given to the state in any primary legislation are not open to abuse or arbitrariness. Of course, the laws in the statute book must be written narrowly so that they protect rights on the face of it, rather than being written broadly and relying on the self-restraint of future Administrations to exercise them proportionately.
Charlie Dewhirst (Bridlington and The Wolds) (Con)
Q
Ellen Lefley: We continue to have concerns, acknowledging that there are two key oversight mechanisms in the Bill that were not in the previous one: this independent reviewer role and the code of practice. It would be far easier for Justice, but more importantly for Parliament, to be assured of the proportionality of any human rights infringement if that code of practice were before us.
Paragraph 79 of the human rights memorandum to the Bill notes that the code of practice will significantly impact whether the EVN measures are proportionate and prevent arbitrary interference with people’s privacy. It would therefore be very helpful to see that detail in order for Parliament to be confident about the content of that code of practice and how these powers will actually be used.
Mike Wood
Q
Ellen Lefley: I will try to give a very brief summary of the wider legislative framework that operates with respect to artificial intelligence in general. There are, of course, human rights obligations on any public authority or any authority exercising public functions, as well as equality obligations against direct and indirect discrimination. There is the data protection framework, which of course relates to personal data. Then there are different obligations on artificial intelligence use within different sectoral areas.
Mike Wood
Q
Ellen Lefley: That is where it gets quite tricky, because of course the first barrier would be even knowing that you have been subject to any kind of algorithmic decision making or algorithmic-assisted decision making. If you have been subject to a completely automated decision, the new data Bill that is coming through will enable you to make representations and to request human intervention after the fact. But if algorithms are assisting a human decision-making process, there is no right to be notified, let alone to complain.
The position of someone who has been subject to one of these decision-making processes also needs to be considered in a very realistic way. The motivation, empowerment, means and brain space to complain in such circumstances cannot always be relied on. Justice is clear that while access to redress is always important, preventing unfair and discriminatory decision making always needs to be the priority.
The Chair
There being no further questions, I thank the witness for her evidence. We will now move on to the next panel.
Examination of Witness
Mark Cheeseman OBE gave evidence.
The Chair
We will now hear evidence from Mark Cheeseman OBE, chief executive of the Public Sector Fraud Authority. We have until 3.50 pm.
Mike Wood
Q
Mark Cheeseman: The practical benefit to consider is that the place from where these powers are operated will have some degree of independence and separation from Ministers. That is a practice you would see in other circumstances as well, so it may give Parliament some assurance. That is balanced up against the cost.
Mike Wood
Q
Mark Cheeseman: In the Bill, the Minister passes the powers to authorised officers. The authorised officers could be in that statutory body, and the authorised officers would be the ones who use the powers to do that. Those authorised officers would be people who have experience working in fraud and are part of the Government counter-fraud profession.
Mike Wood
Q
Mark Cheeseman: The Bill currently lays it to the authorised officers. One of the transformations that has been going on in Government is the professionalisation of counter-fraud work. We now have a counter-fraud profession. There are now professional standards where, a while back, there were not, for a lot of investigations in the public sector. There are professional standards and practices, and a code of ethics for people who work in the sector. That sets a standard for the knowledge, skills and experience that the authorised officers exercising the powers would have. As to what level they are, that aligns with current practice and what you would see across the public sector.
Mike Wood
Q
Mark Cheeseman: The Public Sector Fraud Authority has been created by bringing together people from other spaces. These powers are designed by His Majesty’s Revenue and Customs. We heard from Richard Las earlier about the powers that HMRC uses to take action on suspected fraud where it has reasonable cause to do so. It is some of those experts who have come and developed these powers. I feel that that capability will come into the organisation, through which the organisation will be able to use the powers.
Mike Wood
Q
Mark Cheeseman: Absolutely. The code of practice will be developed alongside the legislation, as is standard practice.
Mike Wood
We saw this in other legislation under the previous Government. It is not uncommon for Ministers to give an undertaking that at least a draft code might be published before legislation returns to Parliament for final decisions to be made. I know this is, perhaps, a question to ask of Ministers in a future session, but what are your thoughts on developing a draft code that parliamentarians might be able to look at whilst making those decisions, given that the legislation is now well under way? Is that something that you feel is a long way away, or would it be possible to have at least an outline of a draft code in a reasonably short period of time? I accept that there will be developments as we learn with experience.
Mark Cheeseman: I will leave Ministers to answer that question later, but we are developing the codes of practice now. The reason I talked about who has come into the Public Sector Fraud Authority to think about this is because it is not from scratch; we are basing it off current practice elsewhere. We are now developing those and they are under way, but I will leave it for Ministers to respond on the timescale.
Mike Wood
Q
Mark Cheeseman: It is important to remember that the 10 days in the legislation is a minimum. It is the lowest that would be used. It is not saying that it will always be 10 days. One of the witnesses earlier highlighted that some of the organisations will have standard practices where they could respond in that time—they will be set up to do so. The time that is given will be dependent on the organisation you are interacting with, the individual you are interacting with and what is reasonable. Our fraud investigators are trying to balance the expediency of doing the investigation with making sure that people can respond, and that it is a fair and reasonable time to respond. The balance is there, and we should remember that that timescale is a minimum.
Mike Wood
Q
Mark Cheeseman: It is slightly different—it goes back within the structure, but the review of that decision is done by a separate authorised officer from the original authorised officer who did it.
Mike Wood
Q
Mark Cheeseman: The process as set out in the legislation is within the organisation, but there is an extra safeguard of an independent chair who will review the decisions taken by authorised officers. One would expect that that would be on a sampling basis, but we will be reviewing those decisions. If there are practices where those timescales look unreasonable, the independent chair could pick up on that and ask for action to be taken on it.
Mike Wood
Q
Mark Cheeseman: There will be case-by-case review, but you are right; it will be more, “Here is an issue that should be dealt with, and here’s how”.
Andrew Western
Q
Mark Cheeseman: My view is that the Bill does strike that balance, and it tries to strike the balance. It is difficult, because you need to balance the ability to take action against someone who has committed fraud against the state with having fair and reasonable processes for looking at someone who has not. The purpose of an investigation is not to find fraud; it is to find fact. That is why we have professionals who are trained and have a code of ethics around objectivity; their role is to find fact, not fraud. The Bill tries to strike that balance both by having authorised officers and by having the oversight that is in place. The Government structure, in having the counter-fraud profession, provides some of that as well. My view of the Bill is that there is a fair amount of independent oversight—that is a good thing—to increase how well things are done.
Michael Payne (Gedling) (Lab)
Q
Mark Cheeseman: Of course. When we estimate fraud, we estimate fraud and error, as the NAO has done. The NAO used the methodology that we have used previously. We have not repeated that yet, because it has gone ahead of us in the cycle. I have no reason to indicate that its estimate is incorrect, but that is its estimate, and Joshua was here earlier.
We estimate fraud and error as a whole, rather than fraud separately, but what we have seen in the fraud data is that detected fraud in the public sector has risen over the past few years. We have published that. Some was due to covid, but some is in other spaces. Earlier witnesses indicated that the threat has risen and that there are some changes in the perception of fraud and of how people may approach it.
My perspective is that the level of fraud and error in the system is high. There is waste there, and Parliament itself has challenged the Government on what more they can do to deal with it. The threat is rising, and therefore in my position, I think that the powers will help to take action on that. There is more to do to drive down waste and to reduce fraud in the system.
Michael Payne
Q
Mark Cheeseman: I will come back to what I said about the counter-fraud profession. We are one of the only countries in the world with professional standards published. Those are used by the police, the Serious Fraud Office and HMRC. They use these types of powers successfully on a regular basis. We would have exactly the same standard of investigator—both by bringing them in and by training them up to those standards—who would use these powers if and when they are in place.
Georgia Gould
Q
Mark Cheeseman: Yes. Apologies—that was a slip when I answered earlier. Yes, the powers of the Minister—it is written as “the Minister” in the Bill—are delegated to authorised officers, who sit in the PSFA. They would be qualified to the standards of the profession, and they would be taking the decision. What I was referring to earlier is that any review decision, if someone asked for a review, would be taken by a separate authorised officer. There are a number of provisions in the Bill to enable people within the process to make an information-gathering request or to ask for something else to be reviewed.
Georgia Gould
Q
Mark Cheeseman: Absolutely. That decision is made by the authorised officers, based on their experience of weighing up both proportionality and how they can engage with the organisation or individual they are asking for that information, and that individual or organisation can request a review of that request.
Georgia Gould
Q
Mark Cheeseman: Absolutely. First, the PSFA has been brought together from experts across the system. We have brought in experts not just from within the public sector, but from other sectors, and we also work with other countries to understand what they do on this. We have been consulting very widely with the public sector, and a number of the people who have come to look at this have looked at it from the point of view of what they could not achieve in their own public bodies and therefore how they could take more action and what that power would look like. We have also brought together other investigators and asked them what they think the optimal powers are and what the proportionality aspect and the safeguards should be, and considered that. We have done quite broad consultation within the public sector, but we have also asked local authorities what their views are on other aspects such as that.
Georgia Gould
Q
Mark Cheeseman: The Public Sector Fraud Authority has two elements to it. One is overseeing Government and how individual Departments are doing in dealing with fraud and what they are doing on it; the Bill itself says that Departments would refer cases to the PSFA and ask for them to be dealt with under it. The second is providing some of the services that support Departments around taking action on fraud where it happens.
The biggest difference we will make, alongside that, is through prevention. We heard from witnesses earlier about the use of data and analytics. We have a data and analytics service that works with public bodies to use that to find and prevent fraud up-front. We also have a risk service that works with other parts of the public sector to understand the risks they face, in order again to prevent those risks by putting in controls.
While there will always be that balance, there will also always be some element of fraud that is still committed. We will not be able to design a system where there is no fraud risk or design out fraud. There will always be cause for an efficient, effective and proportionate part of the machine to take action on those instances of fraud and to investigate them thoroughly and properly.
Rebecca Smith
Q
Mark Cheeseman: Again, I do not know whether it would need to be in the Bill; that would be for you to debate. As it gets past the authorised officer, there is a structure: there are senior leaders with deep experience in investigating fraud who are overseeing them. We have structures of senior investigation officers overseeing your investigators and the individual authorised officers. While it may feel like a big jump, there is a structure to ensure quality, to ensure the right practices, and so on. That directly compares with what happens elsewhere.
I am pretty comfortable that “authorised officers” is a term used elsewhere. I recognise what you say about the seniority of grade; I had to have a wry smile, because it took me a while to get to HEO and SEO—higher executive officer and senior executive officer—but those are still senior, experienced roles. They are experienced administrators with a high level of skillset and expertise doing those roles. Part of the reason for creating the counter-fraud profession is to show the expertise and capability that those experienced counter-fraud experts have in taking action on fraud.
The Chair
There being no further questions, I thank the witness for his evidence and we will move on to the next panel.
Examination of Witness
Jasleen Chaggar gave evidence.
The Chair
We will now hear evidence from Jasleen Chaggar, the legal and policy officer at Big Brother Watch. We have until 4.10 pm.
Rebecca Smith
Q
Jasleen Chaggar: We recognise that the Bill is different from the previous Conservative Government’s Bill and some changes have been made. However, we are still concerned that the purported safeguards in the Bill are really insufficient. One of the major safeguards that is pointed to as a reassurance is the fact that financial transaction information and special category data will not be handed over to the DWP from the banks. However, it is a circular safeguard in reality, because once the account number and name of the individual has been passed on to the DWP, it can very easily go back to the bank and request that granular financial information. That is incredibly privacy invasive, as you will know, so we are still concerned about the safeguards in the Bill.
A similar safeguard is the provision for an independent person, but there are no safeguards about what qualifications that person should have. They are expected to provide an annual report to Parliament, but we are concerned that their oversight role is more to do with enforcement than accountability. There are provisions about the efficiency of the measures but no provisions about how they impact equality or the adverse consequences on benefits recipients, so we are not reassured by these safeguards.
Rebecca Smith
Q
Jasleen Chaggar: Is that in relation to—
Rebecca Smith
Particularly in relation to bank account details and information on spending, and that sort of thing, which you just used as an example.
Jasleen Chaggar: On the eligibility verification measures—what we are calling the bank spying powers—we are recommending that they be removed in their entirety. They really are unprecedented financial surveillance powers. There are no other laws like this in this country. The powers would permit generalised mass surveillance of everybody’s bank accounts. It is not just benefits claimants who will be targeted; it is everyone’s accounts, including yours and mine. They will be scanned using algorithmic software to make sure that the eligibility indicators are not met. Even if you are a benefits recipient, you can appoint an individual—a parent, a guardian, an appointed person or your landlord—to receive the benefit on your behalf, so those people will also be pulled into the net of surveillance. We do not really see a way in which these measures could ever be proportionate.
Andrew Western
Q
Jasleen Chaggar: What is really important about the Bill is the conflation of fraud and error. It is not just people suspected of serious crime, or even low-level crime, who are pulled into the net of surveillance. It is also people who, while navigating the complexities of the benefits system, may have found themselves on the wrong side of making a benefits claim and made a mistake. It also involves DWP’s own errors, which make up one in 10 errors. What is critical when we are thinking about the Bill is that it is suspicionless surveillance that applies to everyone.
Andrew Western
Q
Jasleen Chaggar: There is another difference between HMRC recovering money and the DWP recovering money. When you think about the types of individuals these powers will be recovering money from, they are among some of the most vulnerable in our society. There are people living on the breadline, disabled people, elderly people and carers, who will all be dragged into this surveillance. The risk of errors caused by the automated system that is proposed will, therefore, have a dispro- portionate effect on those groups of people. There is a difference, if that is the case, between the powers being used by HMRC and the DWP.
Andrew Western
Q
Jasleen Chaggar: I am not aware of powers that are similar to eligibility verification notices that are exercised by the DWP. I am aware that they have similar powers in relation to direct deduction orders, and maybe that is the distinction that the witnesses earlier were making.
Andrew Western
Q
You talk about the inclusion of error, as well as fraud, in what we are attempting to do here. Do you accept that there is the potential, through the effective use of the eligibility verification measure, to detect overpayments through error sooner, thereby reducing any overpayment because it would come to light earlier?
Jasleen Chaggar: Yes, and to stop people getting into debt is an incredibly laudable aim. The question is whether we are willing to infringe the privacy rights of the entirety of the population to do that. Perhaps a more proportionate solution would be to make it easier for those benefits claimants who are making mistakes to navigate the system in the first place.
Coming back to your previous point, if you were happy to send me information about those powers, I would be happy to get back to you with our position on those.
Andrew Western
Q
Jasleen Chaggar: I accept that the Government are purporting that this is a sufficient safeguard, but I propose that it is not, because of that circularity.
Andrew Western
Q
Jasleen Chaggar: Absolutely. We believe as much as anyone that fraud and error need to be tackled in this country. Our position is that the best way to do that is through intelligence-led policing, where there is suspicion of fraud and not just of error, that is well resourced. In relation to error, as I have said, we think that making the benefits system easier to navigate in the first place, and the DWP getting its own house in order to avoid its own errors, are far better, more proportionate and privacy-preserving solutions than the ones proposed in the Bill.
Andrew Western
Q
Jasleen Chaggar: I think that it is important that suspicion has already arisen before those policing powers can be enacted. The police already have powers to request that granular financial information where there is suspicion of fraud.
Andrew Western
Q
Jasleen Chaggar: I think that there are ways to address this. We are a civil liberties organisation, and our job is to be a watchdog and to ensure that privacy rights are preserved. I do not have a solution for how the police should find out whether someone is suspicious, but we should not sacrifice the privacy rights of us all just to find out whether we should be suspicious of someone when no suspicion exists. As I said, it is a disproportionate power.
Siân Berry
Q
Jasleen Chaggar: Our view is that the powers will only ever be proportionate if they uphold the presumption of innocence, due process and judicial oversight, and any privacy infringements are set out in law and are necessary and proportionate. We feel that a code of conduct would be insufficient, because it would just defer those legal protections to some other time. Also, if an individual has a problem as a result of the use of the powers, they are unable to enforce their rights through a code of conduct. Setting out the protections in legislation would create a far more rights-preserving framework, with which we would definitely feel more comfortable.
Siân Berry
Q
Jasleen Chaggar: We are really concerned about the unintended consequences of the Bill. We appreciate that there has been an effort to tackle fraud and error, which is a serious problem, but we also have to consider the adverse and unintended consequences. One of those is the algorithmic error that can occur when automated systems are used on a population-wide scale. If the algorithms are scanning the bank accounts of 10 million people, an error rate of just 1% will result in 100,000 cases where innocent people are wrongfully investigated.
We are also really concerned about the human backstop element. The DWP has assured us that there will be human involvement in any investigations on the back of receiving this data, but when you receive such a deluge of information from the banks, that calls into question whether the human involvement will be meaningful. The impact assessment acknowledges that by saying that we might have to slow down the rate at which we receive all this data from banks. We are very concerned about the false positives, and about the devastating effects that they would have on the lives of the individuals who are wrongfully investigated.
Benefits recipients, who are already subjected to burdens in terms of documentation requirements, will find themselves subjected to an investigation by the DWP. We have heard from dozens of disability rights and elderly rights groups about the anxiety and stress that this will cause. Also, when benefits recipients are under investigation, they can find that their benefits are suspended, meaning that they will not have the money to pay for food, medical bills or heating bills. So the equality impact also has to be considered, and we have not actually seen an equalities impact assessment for the Bill either, which is a concern.
The Chair
There being no further questions, I thank the witness for her evidence. We will move on to the next panel.
Jasleen Chaggar: Thank you for having me.
Examination of Witnesses
Geoff Fimister and Rick Burgess gave evidence.
The Chair
We will now hear oral evidence from Geoff Fimister, of the Campaign for Disability Justice, and Rick Burgess, from the Greater Manchester Disabled People’s Panel, who joins us via video link. For this panel, we have until 4.40 pm. I have introduced the witnesses already, so we will go straight to Rebecca Smith.
Rebecca Smith
Q
Geoff Fimister: I should say, first of all, that the Campaign for Disability Justice was launched relatively recently—a few months ago—by Inclusion Barnet. We now have a substantial number of individuals—several hundred—supporting us, as well as a substantial number of organisations, ranging from large charities to grassroots disabled people’s organisations, so we get quite a lot of feedback.
I suppose our concern with the Bill include a broad aspect, but also a very specific aspect as to how it may impact disabled people. The broad aspect is that, because it focuses very much on means-tested benefits, it will, by definition, disproportionately affect people on low incomes, and disproportionately affect disabled people, because they are more likely to be on low incomes than others.
The practical issue, which I think has attracted the most concern, from the conversations I have had, is false positives, as the previous witness, Jasleen Chaggar, mentioned. We are all familiar with a world in which we have problems with malfunctioning technology. Every few months, my internet provider locks my inbox because of “suspicious activities”, which have included sending an email to an MP’s researcher or one to Mencap. Every now and then, my bank freezes my wife’s and my bank accounts because of “suspicious activity”, such as, on one occasion, purchasing a sandwich from a Marks and Spencer in Deptford.
That might sound entertaining, but it is a serious business; this tech goes wrong, and I think the previous witness made the point that, if large numbers of people are embraced by this kind of trawl, it will go wrong for a percentage of them. We do not know whether that will be a large or a small percentage, but even a small percentage of a big number is a lot of people. People being left without any income if technology triggers the cessation of their benefit is a serious business. Not having any income can cause hardship, debt and stress. In extreme cases, there can be serious health and safety issues. Disabled people are concerned about that kind of eventuality.
As to what we can do about it, I understand the thrust of the Bill and where it is coming from. In parliamentary terms, it has widespread backing, although a number of reservations have been expressed. We would like to see some sort of safeguard whereby benefits could not be stopped unless and until it was established that there was an overpayment—not that the DWP thinks that there might have been because the tech spotted something. We do not want to see a “shoot first and ask questions” later approach. If we could have some protection along those lines, that would be helpful.
Rick Burgess: I stress that I am from the Greater Manchester Coalition of Disabled People. The panel is something we do, but I am not speaking in that role today.
There are particular worries about how this affects people living with mental distress, particularly those with diagnoses of paranoia, schizophrenia, depression or anxiety. This adds to the feeling of being monitored, followed and surveilled, because you literally are being surveilled by your bank on behalf of the Government. So it will necessarily reduce the wellbeing of disabled people who are claiming benefits that are monitored by the system. There is no getting away from that.
On the potential risks, when you enter a trawling operation, you are not targeting it in any way; you are simply looking at everyone. So the error rate becomes extremely important. We do not know exactly what the technology is. We have not seen the equality impact assessment, but even if it had a failure rate of 0.1%, which would be a quite respectable systemic failure rate—it is pretty acceptable in a lot of these areas—that is still 1,000 people per million scanned. If you are talking about even the means-tested benefits, that is going to run to thousands of people getting false positives. If you think about the entire DWP caseload, which is 22.6 million people, that is over 22,000 people. Bearing in mind that the Post Office scandal involved fewer than 1,000 people, you are at the inception stage of something that could be the greatest miscarriage of justice in British history, if you go ahead with this with untested technology that has not had proper impact assessments.
I stress, though, that we are against this measure in its totality because it treats disabled people as a separate population who should have lower privacy rights than the general population. In that respect, given that the United Nations has condemned the UK twice in a row for grave and systemic human rights abuses, this is going further in the wrong direction and failing to address the failures identified by the UN. It is further marking disabled people for additional state oppression and surveillance, which, as I said, will necessarily be harmful to a great many of the people under the surveillance regime.
Andrew Western
Q
Rick Burgess: Because we are over-represented in those classes. If you choose to target it at those cohorts, you are accepting an additional level of targeting towards disabled people, which is discriminatory.
Andrew Western
Q
Rick Burgess: I think it does edge into that. There is certainly established thinking and case law that begins to establish that. The Equality and Human Rights Commission need to be brought into this urgently. There need to be public and transparent equality impact assessments, because I do not see how this does not breach a right to privacy and represent discrimination against groups who are over-represented in these cohorts.
Andrew Western
Q
Rick Burgess: It is about where that measure is one of a number of additional enforcement measures, rules or laws that would have negative consequences. The key to this is the trawling nature of the technology; it is not targeted, beyond being aimed at everyone on UC, everyone on ESA and so on. When you trawl, you do not target, and then you have a huge cohort. If, in that cohort, you have over-representation, without even thinking about it, you have then enacted a level of discrimination, because of the trawling nature of this approach.
If this approach applied to everybody on benefits, that would also be slightly questionable, because you are applying a different level of privacy to people who get an award from the DWP versus people who do not. If it applied to the whole country, I suppose that would be fairer in one respect, but it would also be a breach of everyone’s privacy, which goes to another question.
In terms of this measure being important for Government revenue, the amount lost to the tax gap is more than four times more—we are talking about £9.1 billion, but the tax gap is over £39 billion. You would recover more money if you subjected the whole country to this measure, but I would suggest that the reason you do not subject the whole country to it is that there would be outrage, because people would find their rights to privacy being completely abused.
Applying this measure in these targeted ways suggests a level of, “Well, these are people who perhaps have less rights to privacy than the general population.” If you are happy to have your bank account monitored in this way, fine, but you have not suggested that this should apply to the general population. You have suggested that it should apply to a population who receive benefits, and within that population there is an over-representation of disabled people, who are already exhaustively monitored, reviewed and tested and having to provide proof, whether that is for a blue badge, personal independence payment, ESA, universal credit or a concessionary pass on public transport.
The life of a disabled person is to be constantly tested and examined and having to produce proof, and this is another step in that. That is why this is germane to the United Nations report on the convention on the rights of persons with disabilities. We have continued down the road of removing rights, not respecting them, and of subjecting disabled people to greater scrutiny, greater surveillance and greater tests of their basic rights to be a citizen of this country. It is really quite distressing for disabled people to be in this position.
Not only have we had two really damning reports from the United Nations, but the new Government is actually adopting old policies of the previous Government and continuing on that road. The level of anger and distress in the disabled community is absolutely enormous. It is really difficult to explain to people that this is not an obvious attack, or one motivated by ableist assumptions about how disabled people run their lives or whether they are more or less honest, or more or less genuine, than people who are not disabled. It is really hard going for us—I have to tell you that. Disabled people in Britain have had a decade and a half of being the scapegoat of this country, and it has to stop. This measure is actually making it worse, as opposed to stopping that scapegoating.
Geoff Fimister: I just want to add something to a point that Rick made. We both made the point that the discriminatory aspect relating to disabled people arises, in the immediate sense, from the fact that these means-tested benefits are primarily in scope at the moment, and disabled people are disproportionately likely to be on low incomes. It is worth adding that if this measure were to be extended at a future stage to a wider range of benefits, potentially bringing disability benefits into scope, that would be even more sharp discrimination against disabled people.
They are not theoretical points that Rick has been making—there is a really raw feeling among disabled people that they are being targeted. In the context of quite a lot of negative media publicity around the interface between employment and unemployment among disabled people, there is an unpleasant atmosphere for disabled people. That is certainly the feedback that we are getting.
Andrew Western
I will not ask any more questions, but I just say to Rick that I think it might be helpful for a follow-up conversation to take place. Without wishing to get into a protracted argument, there were some things that I did not recognise as part of the Bill, but clearly that is how people are feeling and how the people you represent are feeling. I am very happy to ask officials to pick up a conversation to go through the detail.
The Chair
There being no further questions, I thank the panel for their evidence, which was robustly delivered.
Examination of Witnesses
Andrew Western and Georgia Gould gave evidence.
The Chair
For the final session, we have the Ministers in charge of the Bill. We have until 5 pm. You have been participating actively in the proceedings already, but could both of you please introduce yourselves for the record?
Andrew Western: I am Andrew Western, Minister for Transformation at the DWP.
Georgia Gould: I am Georgia Gould, the Minister for public sector reform at the Cabinet Office, with responsibility for fraud against the public sector.
Mike Wood
Q
Andrew Western: For the DWP part of the Bill, there will be three individual codes of practice: one for the eligibility verification measure, one for the debt recovery measure and one for the information gathering measure. As for exactly how they will work, you will appreciate that we are able to talk only in general terms at the moment, because that will depend on what the final version of the Bill looks like. That is why we do not currently have a code of practice that we can share.
Perhaps it will be helpful if I say a bit about how we intend to engage both Houses on the content of the codes of practice. For the Bill Committee, I will provide an outline of what will be covered by the draft codes of practice as we come to each of the relevant clauses, allowing the Committee to provide feedback on what they feel should be in there.
Beyond that, we intend—there are ongoing engagements, as you heard earlier from, for instance, UK Finance—to publish a draft version of the codes of practice as they pertain to the DWP in time for the House of Lords Committee stage, so it will also have the opportunity to play into the conversation on that. Ultimately, there will be a final statutory public consultation on the content of the codes of practice. It is difficult to say with any sort of exactness or precision what the codes of practice will look like at this stage, without knowing what amendments, if any, will be made to the Bill. But I know that Georgia has a code of practice on her side as well.
Georgia Gould: I do, and the same applies. As we go through the clauses, I will share with the Committee where we are on the codes of practice in relation to those clauses. We are working on the same timeline set out by the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Stretford and Urmston. For the PSFA, within the Bill, it requires a code of practice that is particularly focused on penalties, in clause 60. Beyond that mandatory content, the intention is that the code of practice will also include information on safeguards and vulnerability assessments when it applies to the PSFA powers for investigating individuals, and more detailed information on the various reviews and appeals.
Mike Wood
Q
Andrew Western: That is the route we are taking. Obviously, Members have an opportunity to suggest what they would like to see in the code. The code is primarily an operational document rather than one on the general principles in the Bill and what we are trying to achieve through it. I absolutely understand that Members will want to see that, but we are simply not able to bring forward a final code of practice. It would not be possible to do that without knowing what is in the Bill. We can commit to sharing a draft as soon as we are able, but even that would be subject to change. It is not unusual, as I understand it, for this to be the case.
Mike Wood
Q
Andrew Western: All I would say is that that is the timeline we are proposing to follow. We will share the draft code of practice as soon as we are able to do so for all the measures that have them.
Mike Wood
Q
Andrew Western: I am happy to confirm precisely—because it may be that Members, as we go through the Committee stage, make it very clear what their expectations would be—what the current proposal is before we go into line-by-line scrutiny on Thursday.
Mike Wood
Yes.
Andrew Western: Because they are iterative documents that will change as we go through the test-and-learn phase. In particular, we are looking to introduce the eligibility verification measure in quite a cautious manner initially to check that it works, and to check that we do not have the sort of overreach that some witnesses have suggested may be the case. We want to be certain that the false positives that we have talked about and that witnesses have raised are minimised as best as possible. It is to enable flexibility so that we have the maximum potential to make any changes that we require, but obviously we would update the House as and when we were to do that.
Mike Wood
Q
Andrew Western: I would be very happy to have that conversation, should you want to table any amendments in that regard.
Mike Wood
Q
Andrew Western: I would not accept that and I do not think that that is the case. I would say that we require that flexibility. Even with the six weeks, if there are problems in the process, we would potentially need to act more swiftly than that, based on feedback from stakeholders. As I said, colleagues are very welcome to table amendments if they want to secure any changes in that regard.
Neil Coyle
Q
The Chair
That is a matter for debate. I think it is probably a question for the Library. Let us carry on with the questioning.
Mike Wood
Q
“Where it is proposed to introduce a code of practice in a way or for a purpose which departs from the guidance below, Ministers should be aware that this is likely to be controversial, particularly in the House of Lords.”
Have officials brought that to your attention?
Andrew Western: As I said earlier, we hope to have a draft code of practice by the time we reach the House of Lords Committee Stage. Clearly, alongside consideration of that guidance, as I said—and it was reiterated by Mr Coyle—this has not been unusual practice in recent years, as I understand it.
Mike Wood
Q
“the drafting of the code ought to begin early enough to enable a decision as to whether statutory provision is required”.
Has that drafting been done early enough?
Andrew Western: As I said, we will debate this in more detail as we come to the relevant stages. I think that we have done this in sufficient time to enable us to consult, as we are required to do, on the statutory code of practice and to ensure that both Houses can see it as it makes its way through the process.
Mike Wood
Q
“if Parliament is to be asked to enact statutory provisions relating to a code,”
which appears to be the case in this instance,
“a draft of the proposed code should if at all possible be made available so that the appropriateness of the statutory provisions can be properly considered.”
Obviously, that is part of the legislative process. Should we not have that information? Why should only the House of Lords be provided with that?
Andrew Western: I suspect that at that point you are asking a procedural question, so I am not best placed to answer it.
Michelle Welsh (Sherwood Forest) (Lab)
Q
Andrew Western: In the DWP space, we estimate that the amount would be £1.5 billion over the forecast period. That roughly equates to around £950 million on the eligibility verification measure, with the overwhelming majority of the rest—in fact, almost all of it—coming from the debt recovery power. There are also potentially significant savings over time that my hon. Friend the Parliamentary Secretary, Cabinet Office may want to outline with regard to the PSFA powers. I realise that they are scalable; they start off small-scale. Minister Gould, would you like to come in on the potential?
Georgia Gould: They are more modest in the first instance. We are estimating just under £60 million-worth of savings. We are testing the new models. If the model is successful, there is potential to scale that up. We think that this is the first time we are introducing powers to take on fraud in the wider public sector outside tax and welfare. A huge amount of fraud has gone uninvestigated. We think the deterrent impact of this will be substantial.
Gill German (Clwyd North) (Lab)
Q
Andrew Western: As I have highlighted in my questions to witnesses throughout the day, there is the potential, through the eligibility verification measure, for a number of overpayments to be detected earlier than they would have been otherwise, thereby avoiding the large numbers that we have seen people rack up in overpayments through, for instance, the carer’s allowance challenges that we have seen in recent years.
The breadth of the conversation we are looking to have with people who are in debt with the Department is significant. We heard about the MoneyHelper service, on which the Money and Pensions Service works with us. That is just one of a range of organisations and packages that we utilise to support people who are in debt. We know that, whatever the reason—whether it is fraud or error, but particularly, as you say, if it is error—it is an incredibly stressful time for people.
In debt recovery terms, the power that we are taking is intended to be a power of last resort. What we always want to do, having been through all the things that you would expect us to do—the vulnerability management framework that was referenced earlier and the assessment that we make of people’s ability to pay—is to agree an affordable repayment plan. By the time we reach the point where we are looking for a direct deduction order, we would have looked to engage somebody on multiple occasions, contacting them several times and trying to agree that plan. This is for people we have no other means of engaging. It is as much a lever to try to bring them to the table and have the sorts of conversations you referenced as anything else.
This is also about addressing the existing fundamental unfairness. We can directly deduct from somebody in receipt of benefits, by deducting from that benefit entitlement, and we can do the same for someone in pay-as-you-earn employment, but we do not have that opportunity for people in receipt of income through other means—most obviously, but not exclusively, self-employed people. There is a fundamental point about addressing that inequity in the system. Having made those financial assessments, we know that these are people who can afford to pay. We have tried to reach out with the wraparound support that you suggested, and ultimately, they continue to refuse to engage.
Michael Payne
Q
Andrew Western: As it relates to the DWP—I do not know whether you want to say anything about the PFSA powers later, Georgia—it is worth reflecting that the proposed eligibility verification power is in effect a data-push power. The banks will not make any decisions as to someone’s culpability, on what penalty they might receive, or on whether the overpayment flagged on the account is legitimate; all the banks will do is send back a marker against an account to suggest that someone is in breach of their eligibility requirements.
For example, that might include someone who has more than £16,000 in their account, but is in receipt of universal credit. It is important to say that the flag is then passed to a human investigator to analyse the information and look at what the reasons may be, because there can be very legitimate reasons why someone has more than £16,000 in their account and is still entitled to benefits, such as someone who has received a compensation payment that is out of scope of what would be considered capital for benefit-eligibility reasons.
In all the five principal measures on the DWP side of the Bill, a human is involved in the decision making: on eligibility verification, it is passed to an investigator; on information gathering, when we receive information, it is passed to an investigator to consider the next steps in a fraud investigation; on debt recovery, an individual—a person—would make a decision as to someone’s ability to repay a debt; and on penalties reform as proposed, a human will determine what actions will be taken against a person who received a penalty for fraud against a DWP grant scheme. That is entirely the way that it works with any other penalty that can already be applied. Finally, on the powers of search and seizure, as we would expect, a human judge will take a decision on whether to issue a warrant. At every stage, a human decision maker is baked in before any final decision on sanction or otherwise.
Rebecca Smith
Q
Andrew Western: A draft code of practice will not be available at that stage, so I will speak in general terms about what we intend to include, but there will not be a written document at that stage.
Rebecca Smith
Q
Now the question that I was coming to, if I may. The state pension has been explicitly excluded from the eligibility verification measure, and the three means-tested benefits are the initial focus. I wonder why the Government have left it open to include other non-means-tested benefits in future, and what data would the Government ask for in those cases?
Andrew Western: The state pension is excluded—because of the particular nature of the eligibility criteria for state pension and the consequently incredibly small amount of fraud that we see on it—considering the number of people we would have to bring into scope of the measure to go after what is a tiny amount of fraud. It is not considered proportionate to do that, as far as I am concerned.
The determination that we have made as to the three benefits that should initially be in scope is entirely predicated on current levels of fraud and error. We want to retain the ability, if necessary, to bring other benefits into scope, should there be a surge in fraud in those benefit areas. We do not anticipate this, but we want to future-proof the Bill as best as we can, should there be any material changes in the level of fraud in those areas. For instance, if we consider the tiny amount of fraud in the state pension versus the £1 in every £8 currently spent in universal credit that turns out to be fraud or error, it is clearly right to distinguish between benefits and consequently to have some in scope and others not.
Sally Jameson
Q
Andrew Western: I answered this slightly in response to Mr Payne, but the flag in of itself does not mean that someone has been found guilty of fraud. A bank indicating to us that someone has above a certain amount of capital in their account does not mean, “Job done, box ticked”, or that person receives news that they have been found to have committed fraud, or that we then go through the penalty process with that individual. It would be referred to the most appropriate team for investigation—in the case of capital fraud, the team that looks at that particular type of fraud.
The principal other type of fraud that we think would be in scope is people who have been out of the country for longer than they are allowed to be as a condition of their benefit. Again, it is really important that we do not automatically penalise somebody for having done that, because it could be on grounds of a health emergency abroad. I had somebody in my advice surgery recently whose flights had been cancelled due to an environmental issue in the country that he was seeking to return from. It is really important that this is triaged to a human investigator to look into what the nature of the flag is, what the benefit eligibility criterion that we suspect may not have been satisfied is, and then take the appropriate steps needed to establish whether there is any legitimate reason for that.
Siân Berry
Q
Andrew Western: We would need, at that point, to take advice—legal advice, primarily—if there was that level of concern around any human rights impact. I would not want to second-guess, but certainly, in the instance where those views have been put forward and the legal advice suggested that they were valid, then clearly we would need to take appropriate action to ensure that the Bill is legal and satisfactory.
Siân Berry
Q
Anthony Western: When I talk about reducing over-payments, I mean reducing the value of overpayments rather than the number. Obviously, for a bank account to be flagged, there would have to be something in there to cause that flag. This would not reduce the overall number of overpayments necessarily, but it would reduce the amount of debt that someone might have accrued, were the eligibility verification measure to identify that at an earlier stage. We have seen some horrendous cases, through the carer’s allowance issues that have come to light, involving really significant numbers, because it has gone on for several years. That is the sort of thing we would be able to stop as a result of this—I am really sorry, Siân, but I cannot remember the rest of your question.
Siân Berry
Q
Andrew Western: I am not sure that I fully understood the question, so please come back in if needed. It is clearly the case that if somebody has been receiving benefits that they are not entitled to, for whatever reason, they could end up in a worse financial position as a consequence. That is necessarily the case for two principal reasons. One is that in universal credit all overpayments are reclaimed regardless of the circumstances behind them. That was the policy enacted by the previous Government. The other reason is that they may no longer receive benefits that they previously believed themselves to be entitled to. For instance, if it comes to light that you have £18,000 in your account and there is no mitigating circumstance for that, it would be the case that you would be worse off in overall terms because you would no longer receive that benefit.
Siân Berry
Q
Andrew Western: I am not prepared to put a percentage on it. We would have to see what came out. We have done two previous trials on this and we are fairly confident in the mechanisms that are in place. That has underpinned some of the assumptions we have made. We are committing through this process to a test and learn phase so that we can keep errors as minimal as possible. Ideally, I would not want to see any errors at all, but ultimately we have structured this so that, were something to come back as a false positive, as it were, it would not lead to an immediate decision, because it would be passed to a human investigator for further investigation.
Neil Coyle
Q
Andrew Western: I think it is fundamental, given both the lack of previous action that you identify and a general modernisation of powers. The world is changing. The nature of fraud is changing, and the behaviours exhibited by fraudsters are different from those of 10 or 15 years ago. The previous Government tried to bring forward the third-party data measure, now likened to the eligibility verification measure, but it did not have the oversight and safeguards in place that we have now.
There are a number of totally new proposals in the Bill that are crucial. To your point about the capacity of the police, the powers of search and seizure will be particularly helpful in speeding up investigations into serious and organised crime, because we can crack on with that, as it were, and enter premises without the need to wait for co-ordinated action from the police.
The other totally new power that is really important here, and which I personally think is a fairness argument, is the ability to directly deduct from people who receive their income through means other than benefits or PAYE employment. Overall, it is a fundamental change to the way that we do it, and it is part of a broader package. As I said earlier, this saves £1.5 billion over the forecast period, but it is part of a broader suite of measures that amount to the largest ever intervention to tackle fraud of £8.6 billion over that period. Unfortunately, like many of these things, that number is so high because the level of fraud we have is so high.
Georgia Gould: I add that the PSFA measures are entirely new. There have previously been no powers to investigate and recover fraud from the wider public sector, outside of tax and welfare. This is some of the highest-value fraud, through procurement or businesses falsely applying for Government grants, which is currently going un-investigated because of the resource pressures that you talked about. These are landmark new powers to investigate fraud across the wider public sector that have not previously been considered.
Neil Coyle
Q
Andrew Western: Yes. We are always looking at ways that we can build stronger relationships and build trust. On specific interventions, I would argue that—although it runs contrary to the evidence that we heard from the witnesses—there is the potential, through the eligibility verification measure, to build trust not just with disabled people but with all people in receipt of benefits, because we will be able to check that they are entitled to what they have. The capture of overpayments at an earlier stage and the ability to know that people who are genuine claimants are receiving the right amount of benefit will help to build that trust.
What really erodes trust is someone being captured in a position where they think that they have, for several years, been receiving benefits to which they are entitled but then end up with, for instance, a £35,000 debt to the Department. There is a suite of activity ongoing with stakeholders. The Minister for Social Security and Disability is doing a tremendous amount of work to reach out to repair relationships where that needs to happen. That work must continue because people make a fair point when they tell us that they are fearful of the DWP. I speak to people who do not want to apply for current benefits; they want to stay on legacy benefits because they fear they will lose entitlement through the application process. That is something that we need to constantly keep under review. We need to look at what we can do to improve those relationships.
Charlie Dewhirst
Q
Andrew Western: That is an important question, on which I have sought to reassure myself. We have already been through a spending review process in which we secured additional funding for further targeted case review officers and officers in the fraud space. I actually think that the number of fraud staff in the Department is slightly concerning not because of a lack but because the number of people suggests the scale of the problem. Because of the spiralling nature of fraud, we have had no option but to significantly scale up the number of people working on both prevention and detection of it. I hope that by embracing new technology, and through data sharing and other mechanisms, we can gradually reduce that number over time. It is a damning indictment of the state that we are in with fraud and error that we have that number of people.
To answer the question, I am assured and we have secured funding for the people that we need.
The Chair
There being no further questions, I thank the Ministers, and all the witnesses, for their participation.
Ordered, That further consideration be now adjourned. —(Gerald Jones.)
Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)
Tuesday 25th February 2025
(1 day, 17 hours ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 View all Terminally Ill Adults (End of Life) Bill 2024-26 Debates Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Chair
Before we start, I remind colleagues about the use of the second person—that is, the word “you”. Can you please refrain from using “you” unless you are actually directly addressing me? As for interventions, they should be a vignette, not a disquisition—in other words, a sketch, not an oil painting. I will remind Members if their sketch becomes an oil painting.
Clause 2
Terminal illness
Amendment proposed (this day): 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
Question again proposed, That the amendment be made.
The Chair
I remind the Committee that with this we are discussing the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
Naz Shah (Bradford West) (Lab)
Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?
I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.
However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.
As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.
Lewis Atkinson (Sunderland Central) (Lab)
Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?
Naz Shah
I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that it really does not matter what happens in other jurisdictions? The question is, does this legislation prevent people who are currently suffering from anorexia from seeking an assisted death or not?
Naz Shah
I completely agree with the hon. Member.
Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.
Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.
Daniel Francis (Bexleyheath and Crayford) (Lab)
The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.
Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:
“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”
I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to
“only because they are a person with a disability”,
it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:
“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”
I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.
Danny Kruger (East Wiltshire) (Con)
The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.
Daniel Francis
I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.
We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend makes an interesting point, but the purpose of the Bill is that a person with a terminal cancer diagnosis and six months left to live would have the choice of assisted death. As we have heard, they might have seen the suffering of relatives with a similar cancer, and they might have seen what their death looked like. I understand that people might disagree, but that is the purpose of the Bill.
Daniel Francis
I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.
We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.
If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.
Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.
I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.
Lewis Atkinson
I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.
Dr Simon Opher (Stroud) (Lab)
I would like to make a short comment. It is very important that the Committee does not get too hung up on anorexia, because the Bill is very clear about what is excluded. Deprivation of nutrition is always reversible. Someone who is anorexic and about to die would go into multi-organ failure and be unconscious and unable to give any sort of consent. Before that, the nutritional deprivation is reversible and therefore not covered under the Bill.
Danny Kruger
I just wanted the hon. Gentleman to comment on the reality in our NHS at the moment that people are described as terminally ill with anorexia. They are given the label of being terminally ill and put on palliative care pathways because it is assumed that their condition is not reversible. Doctors today, in this country, are concluding that people with eating disorders are going to die and are treating them accordingly. Is he aware of that, and how does it affect his comments?
Dr Opher
I am not aware of that. I believe that this is always reversible until a person goes into the absolute terminal stage of multi-organ failure. Before that, we can reverse nutritional deprivation. I do not accept that point, and I think it is important that we look at the Bill in all its detail. I think it has enough safeguards to exclude someone with anorexia.
The Chair
I have received a manuscript amendment from the hon. Member for East Wiltshire that he wishes to move. As the hon. Gentleman knows, a manuscript amendment requires a very high bar and exceptional circumstances. I do not believe that exceptional circumstances are present, and he will be aware that further amendments can be proposed to the clause for consideration on Report. That is my decision on the matter.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairship, Mr Dowd. Although it is for Parliament to progress any Bill, the Government have a responsibility to make sure that legislation on the statute book is effective and enforceable. For that reason, the Government have worked with my hon. Friend the Member for Spen Valley; where changes have been agreed mutually between her and the Government, I will offer a technical, factual explanation of the rationale for those amendments. That applies to amendment 181 in this group.
This group of amendments is linked to how the Bill’s definition of a terminal illness applies to those with a mental disorder or disability. Amendments 399 to 401 would remove the term “medical condition” from the Bill’s definition of a terminal illness, so that only those with an inevitably progressive illness or disease would be able to request to end their life, rather than, as under the current drafting, those with a “disease or medical condition”.
The amendments could narrow the scope of those who may access assisted dying services. However, clinical advice suggests that the use of the terms has changed over time, may not be used consistently and remains debated in both medical and lay circumstances. Removing the term “medical condition” may lead to disputes or protracted debates about whether a particular condition is or is not a defined disease or illness, despite there being medical consensus around whether it will lead to death within six months.
Danny Kruger
I am grateful for that clarification, but it rather concerns me. Can the Minister elucidate exactly which conditions might fall into the category of medical condition that would not be captured by “illness” or “disease”? Does he accept the point that I made in my speech—that the interpretation of the law by the court will be that the phrase expands the definition of a terminal illness beyond illness or disease, as it is in the current law? What are the new conditions that will be captured by the term?
Stephen Kinnock
What the hon. Member will have picked up throughout this debate, on every day that we have met, is that the Government are concerned about adding or taking away terminology that delivers clarity, stability and familiarity.
I have to say that I am quite torn on the hon. Member’s amendment 399, because I absolutely see where he is coming from. It is one of those situations in which my position as a Government Minister is made somewhat more complex by my personal view that his amendment is perfectly reasonable. My instinct—speaking personally as a Member of Parliament, rather than as a Government Minister—is that the remaining terms in the Bill, if we removed “medical condition”, would continue to cover the waterfront or spectrum of conditions. It is possible that this is a case in which there has been an overabundance of caution on the part of the Government. I am delivering the Government’s position, but I want the hon. Member to know that that will not necessarily determine how I vote if this amendment does go to a vote.
Danny Kruger
I was going to remind the Minister that he is, in his strange Jekyll and Hyde personality, speaking as a Minister but voting as a Member of Parliament, so if he has given the Government’s view that my amendment is not acceptable, but he personally thinks that it is, I hope that he will vote for it.
Stephen Kinnock
It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.
Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.
I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.
Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.
In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.
As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.
Jack Abbott (Ipswich) (Lab/Co-op)
Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?
Stephen Kinnock
My answer to that question is yes. My understanding is that so long as the terminally ill, six-month criteria are met, that person would qualify for assistance under the Bill.
Jack Abbott
Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?
Stephen Kinnock
My understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.
Kit Malthouse (North West Hampshire) (Con)
I just want to illustrate to the Committee that people with eating disorders, certainly as they come towards the end of their life, are already subject to quite assertive action by the state. For example, over the past few years, generally, where hospitals have detected that an individual is effectively trying to starve themselves to death, they have applied to the Court of Protection and got orders for forcible treatment. In that application, it is determined that that person does not have the mental capacity to make decisions about their own medical care.
I do not want the Committee to labour under the illusion that people with anorexia or other eating disorders are going to wander up and suddenly ask for an assisted death. If there has been a detection that they are trying to get themselves eligible by effectively causing organ failure by starvation, the system would have intervened well before then, effectively to force them to be treated.
Stephen Kinnock
The right hon. Member makes an excellent point. I think it goes back to our basic view that there are some amazing health professionals in our healthcare system who do fantastic work. Eating disorders are a truly tragic condition and, of course, there is all sorts of support in place. It is not always perfect or exactly how we would want it to be, but I think it would be a false move for the Committee to think that this is an either/or situation. This is a both/and situation. Of course it is not always perfect, but I think we should pay tribute to our amazing health professionals, who look after all sorts of people with all sorts of conditions, including eating disorders.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Does the Minister agree that the language of clause 2(1)(a)—
“cannot be reversed by treatment”—
is reassuring? Indeed, the written evidence from Professor Emily Jackson notes:
“Someone with a condition that is not inevitably progressive, or which could be reversed by treatment, would be ineligible under the Act.”
That covers the case raised by my hon. Friend the Member for Ipswich.
Stephen Kinnock
My hon. Friend makes an excellent point. She brings us back to the fundamental point made in the Bill, which is that it has to be “an inevitably progressive illness”. Eating disorders do not fall under that definition: that is very clear. I hope that that explanation and the observation that I have made on the other amendments are helpful to members of the Committee in their consideration.
Kim Leadbeater
I will keep my comments brief, because we have had a very thorough discussion today. I will first speak briefly to amendment 123, tabled by my hon. Friend the Member for Broxtowe. Amendment 123 would change “an inevitably” progressive disease to “a typically” progressive disease. [Interruption.] Is that the next grouping? Oh, I am peaking too soon—my apologies, Mr Dowd.
I will come back to my hon. Friend the Member for Broxtowe, but let me turn to amendments 399, 400 and 401, on the exclusion of “medical condition”, which the hon. Member for East Wiltshire submitted a few days ago, before the end of the recess. I looked at them over the weekend and was very interested to hear his reasoning for them today. This is the purpose of the Committee; I have listened carefully to what the hon. Gentleman has said, and he has made some valuable points. All along, I have taken the view that this legislation must not only be the strongest anywhere in the world, but be very clear in its intentions and leave no room for ambiguity regarding who is entitled to request assistance under its provisions.
I am very comfortable with the definition of terminal illness in the Bill, but across the world—I have done lots of research into this, as I know other colleagues have—some jurisdictions use the term “medical condition” or, actually, just the term “condition”, and others do not. Many in Australia do, but in New Zealand, for example, which has a similar law to what is being proposed here, “medical conditions” do not feature, nor do they in a number of states in America.
While I do not necessarily think that it would definitely be problematic to include the term “medical condition”, I appreciate the argument that the hon. Gentleman has made. We have to be as cautious as possible to ensure that the Bill achieves its purpose but does not create a lack of clarity. That point has been very well made.
The advice that I have received from officials is that, as the hon. Gentleman suggested, “medical condition” does not have a clear legal definition and could therefore be seen as imprecise. That does worry me. The purpose of the Bill is clear—it is in the title. It is to give choice to terminally ill adults at the end of life. They must have a clear, settled and informed wish, and be expected to die within six months, in circumstances that are inevitably progressive and cannot be reversed by treatment. The hon. Gentleman has, I believe, helped to make that even clearer, and I am grateful to him for doing so.
Naz Shah
My hon. Friend is making her points very clearly. The last words of amendment 181 are:
“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
Does that not demonstrate that the amendment does not change the test for terminal illness?
Kim Leadbeater
My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.
As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.
Danny Kruger
I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.
May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill
“only because they are a person with a disability or mental disorder”.
It would add to clause 3(2) the following additional sentence:
“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.
Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.
Dr Tidball
I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—
The Chair
Order. I do not like to intervene when a debate is going on, but as I indicated earlier, Members’ interventions have to be just that: interventions, not mini-speeches or disquisitions. Can we please keep interventions short and precise?
Danny Kruger
I am grateful, Mr Dowd. I recognise the force of what the hon. Member for Penistone and Stocksbridge is saying. To be clear, the amendments that I am supporting would not deny disabled people any of the other rights that are being awarded in the Bill. She is absolutely right that a disabled person with a terminal illness would qualify just as much as someone who was not disabled. That is absolutely right.
The purpose of the amendment is to ensure that people whose illness is a direct consequence of a mental disorder in particular would not be eligible. The reference to disability is because of the confusion, which I expect the hon. Member for Spen Valley recognises in current law and guidance, about where the distinction between disability and terminal illness lies. That is our concern. The purpose of the amendment is to ensure that people would not be deemed as eligible for an assisted death in consequence of disability or mental illness. I know that is what the hon. Lady is trying to do with the amendment, and with the clause that it amends, so we are on the same page. Our concern is that, by including the words “For the avoidance of doubt” and the word “only”, we will be leaving quite a large loophole, through which, I am afraid to say, some vulnerable people might fall.
I look forward to the Division on the amendments. We have not been able to discuss them all in close detail, but I am grateful to Members for the debate that we have had.
Amendment 399 agreed to.
Juliet Campbell (Broxtowe) (Lab)
I beg to move amendment 123, in clause 2, page 1, line 23, leave out “an inevitably” and insert “a typically”.
This amendment changes the definition of what it is to be terminally ill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.
The Chair
With this it will be convenient to discuss the following:
Amendment 9, in clause 2, page 1, line 24, after “reversed” insert
“or the progress controlled or substantially slowed”.
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Amendment 48, in clause 2, page 2, line 2, leave out
“can reasonably be expected within 6 months”
and insert
“is expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
Amendment 282, in clause 2, page 2, line 2, leave out
“reasonably be expected within 6 months”
and insert
“be expected with reasonable certainty within one month, even if the person were to undergo all recommended treatment.”
This amendment would restrict the scope of assisted dying to people who, with reasonable certainty, would die within one month, even if they were to undergo all recommended treatment.
Amendment 51, in clause 2, page 2, line 2, leave out from “expected” to end.
This amendment would remove the six-month time requirement for a person to be eligible to request assistance under the Act.
Amendment 234, in clause 2, page 2, line 2, leave out “within 6 months” and insert—
“(i) in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or
(ii) in the case of any other illness, disease, or medical condition, within 6 months.”
This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.
Amendment 10, in clause 2, page 2, line 6, at end insert
“, providing the treatment does not alter the overall prognosis of the condition.”
This amendment, which is linked to Amendment 9, would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Amendment 402, in clause 2, page 2, line 6, at end insert—
“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”
This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.
Juliet Campbell
The amendment would change the definition of what it is to be terminally ill, from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.
The limits of medicine, and where they manifest in our healthcare system, have been repeatedly discussed and have come up in oral and written evidence. The Bill’s supporters have frequently used the argument that our current medical care is limited to highlight the benefits of assisted dying, by stating that even with the best care available, not everyone can be prevented from experiencing significant suffering as their life comes to an end. However, such an understanding of the limits of medicine is not consistently applied in the Bill. The truth, as is repeatedly corroborated in the written evidence, is that in many cases we simply cannot reasonably know how long a person could survive.
Witnesses have explained that predicting whether someone is inevitably terminal is often not a certainty. Even when a disease is considered advanced or at the end stage, there are variables—such as an individual’s response to a treatment, access to care, new clinical trials, medical intervention, or a person’s overall resistance —that can influence the outcome. When practising medicine, doctors often use terms like prognosis, life expectancy, or expectation, rather than definitive statements on the degree of someone’s terminal prognosis. The variables in prognosis make the amendment necessary.
The term “typically” better acknowledges the limitations of the knowledge of medical practitioners. In written evidence, Dr Chris Paxton, a retired GP of 38 years, says:
“No doctor can accurately predict if a terminally ill patient has six months or more to live. I have seen many patients being told they have only months to live, continuing living many years after their ‘terminal’ diagnosis.”
The concept of a condition being “typically” terminal acknowledges that although a disease usually leads to death, there may be exceptions where individuals survive longer than expected, or even achieve remission.
The process of assisted dying must maintain honesty and transparency with patients who are seeking assisted death. A declaration of certainty is implied by using the word “inevitably”. In her written evidence, Dr Ariel Dempsey, who is currently studying end of life care, says:
“Physician prognostic estimates are variable, optimistic/pessimistic, uncertain, and more often than not, inaccurate. For example, a prognosis of 6 months is required for hospice eligibility in the U.S., yet it is not uncommon for hospice patients to live beyond six months, even without life-prolonging treatment.”
For individuals seeking assisted death, the use of the word “inevitably” can lead to an over-reliance and overconfidence in the judgment of their doctors. If someone believes without question that they will inevitably die within six months, an assisted death may seem like an obvious and minimally life-limiting choice. The problem is that a claim that someone’s death is imminent and inevitable within six months simply may not be true.
Not only does the use of the word “inevitable” risk embedding dishonesty in our law, but it risks doctors who agree to engage in assisted dying and end of life care becoming overburdened with the responsibility of proclaiming an individual’s prognosis. Having considered the circumstances that surround a person’s illness, a doctor can only give a prognosis that is typical and give a typical indication of their life expectancy.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Will the hon. Lady give way?
Juliet Campbell
I have almost finished, so I will carry on.
If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.
Tom Gordon (Harrogate and Knaresborough) (LD)
It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.
The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.
Daniel Francis
Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?
Tom Gordon
They would need to come within the definition of a terminal illness. I will come that later in my speech.
We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.
Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:
“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”
Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.
We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:
“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”
We must ensure that those voices are not ignored in this conversation.
Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.
The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.
We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.
Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.
Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.
My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.
Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
It is a pleasure to speak under your chairship, Mr Dowd.
I rise in support of amendment 234. I acknowledge the point made by the hon. Member for Harrogate and Knaresborough about not pushing it to a Division, but it is important to hear why it would benefit the Bill if it was agreed to. It would allow a terminally ill person with a neurodegenerative illness, disease or condition who has fewer than 12 months left to live—rather than six—the right to choose an assisted death. I speak as a humanist, because I am very alive to many members of the public, and some MPs, wanting a wider scope of eligibility to cover intolerable suffering. In fact, some want no timescales, and an amendment has been tabled for that. I believe that my hon. Friend the Member for Spen Valley, who introduced the Bill, has had people speak to her and say the Bill needs to go further.
Like all of us, I want to make this a good Act that will have strong safeguards while allowing people choice at the end of life, and I want it to command the support of the House. I reflected on whether we need to have such a wide definition to cover intolerable suffering, and I thought that a change to 12 months for those with neurodegenerative diseases would be a good way to reflect the breadth of voices we have heard in debates on the Bill. It is an appropriate compromise. One of the things we have seen over the course of our Committee debates is the real pulling apart and consideration of what this legislation will mean in practice.
As the hon. Member for Harrogate and Knaresborough set out so well, a 12-month timescale for those with neurodegenerative diseases would mean that people could make decisions while they still have mental capacity. As he rightly said, their condition would so often see a cognitive decline before six months. The Motor Neurone Disease Association—another organisation that supports people living with terminal neurodegenerative diseases—highlighted problems with the six-month criteria and the inequity that arises.
Again, I reference the testimony of medical practitioners from Australia, where some states have eligibility criteria for assisted dying that includes an illness, disease or condition that is expected to cause death within 12 months. It is out there in practice, so it is not a new concept. Professor Meredith Blake said in oral evidence:
“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]
I will draw my remarks to a close, but there is a personal reason why it is important to me that we reflect on 12-month eligibility: the case of Diane Pretty. Diane Pretty was from Luton, albeit she lived in the neighbouring constituency, and some 25 years ago she was diagnosed with motor neurone disease. She tried to change the law then so that she could access assisted dying, such was the pain and suffering that she endured because of her terminal illness. What she said is fundamental and at the heart of what we are trying to do here, 25 years later:
“I want to have a quick death, without suffering, at home and surrounded by my family.”
In the end, Diane Pretty was not successful, and she died aged 43 on 11 May 2002. She did not have a choice. She could not choose the death she wanted. Much has been said about rushing the Bill, but that was over 20 years ago, so the debate has been going on for many years. That is why I speak in support of amendment 234, so that those with neurodegenerative terminal illnesses, whose death is reasonably expected within 12 months, can access assisted death.
Rebecca Paul (Reigate) (Con)
I will speak to amendments 9 and 10, which were tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool). Members will spot the trend: I have been speaking in favour of a lot of her amendments.
Amendments 9 and 10 would make sure the Bill does what it aims to do: ensure that assisted death is available only to those who are genuinely at the end of life. Under clause 2, a person is terminally ill if they have a prognosis of less than six months and if they have
“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
That wording gives rise to a risk of unintended cases meeting eligibility criteria.
In Oregon, conditions such as anorexia, diabetes, arthritis, HIV/AIDS and hernias have all qualified for assisted death. That is partly because the Oregon law uses the language of “irreversible”, just as the Bill says
“cannot be reversed by treatment”.
Conditions like diabetes arguably cannot ever be “reversed”, which suggests something more akin to “cured”; they can only be managed. The definition of terminal illness is now broader than it was ever intended to be.
Tom Gordon
Prior to being elected to Parliament, I worked for a type 1 diabetes charity—I feel like I have been saying that a lot recently. When we talk about diabetes, we often do not consider the fact that there are different types, including type 1, type 2 and gestational. They are not all akin, or the same. Furthermore, the NHS in its own language has referred to it as “a lifelong condition”, rather than a disease or anything that is terminal. How would the hon. Lady reflect on that?
Rebecca Paul
I thank the hon. Member for that thoughtful intervention, and I completely concede that it is not entirely clear, and there are different sources that describe it differently, which, for a non-medical person like myself, makes it difficult. There are certain websites, including NHS England, that may reference it as “progressive”, but equally I am sure that there are other sources that do not describe it in the same way. The hon. Member for Harrogate and Knaresborough makes a really good point, and he will see that I quite often talk about things arguably being the case; I am not saying that it definitely is—I am just highlighting that there is a risk, because if people disagree on whether it is progressive, that is when we have an issue. I see this as an opportunity to tighten up any of that potential risk.
I would say the ordinary person on the street would not expect diabetes to ever fall within the definition of a terminal illness, yet there is a risk that it could do, for the reasons I have explained. That means that the drafting of clause 2 is not quite tight enough in my view.
Kim Leadbeater
Just before the hon. Lady moves on, we may actually have come to a very sensible position based on the other amendments we have been discussing—amendments 399 to 401. I have done a little bit of googling, and diabetes generally is referred to as a “condition”. It might be referred to in other ways as well, but maybe that would be another reason for us all to support amendments 399 to 401.
Rebecca Paul
I thank the hon. Lady for that extremely good news. That would definitely be helpful and provide some reassurance.
Amendments 9 and 10 are essential to ensure that those people who are never intended to eligible for assisted dying under this Bill are kept outside of it. Amendment 9 seeks to ensure that it is not just illnesses that can be reversed by treatment, but illnesses where the progress can be controlled or substantially slowed by treatment, that are ineligible—diabetes being the classic case, which can be slowed and controlled by treatment. Amendment 10 further bolsters that by ensuring that treatments that improve prognosis are not disregarded under clause 2(1)(a).
The problem that we have with clause 2 in its current form is that it fails to distinguish between those who are truly at the end of their life and those who only become terminal if they do not access treatment. There is no requirement for a person to be receiving medical care when their prognosis is assessed, which means that many manageable but irreversible conditions—like diabetes, potentially, and chronic kidney disease—could qualify as terminal if treatment is stopped. Let us take the example of someone with type 1 diabetes, like my hon. Friend the Member for South Northamptonshire (Sarah Bool), who tabled these amendments. If she were to stop taking her insulin, she might meet the criteria for terminal illness under the Bill and qualify for an assisted death—I mean, I certainly hope she would not. Without treatment, type 1 diabetes could arguably be an inevitably progressive and irreversible condition that would result in death within weeks or months.
Dr Opher
There is nothing inevitable about a diabetic getting worse; they just need to take the right treatment, so I would say that “inevitable” is a key word. I respect what the hon. Lady is saying about the amendments, and they do have some value, but I do think it is covered by the current language—
“inevitably progressive…disease…which cannot be reversed.”
I think “inevitable” and “cannot be reversed” are enough of a safeguard to make this a good clause.
Rebecca Paul
I know the hon. Member has a huge amount of experience on this matter given his career, so I thank him for that contribution.
It must not be forgotten that it is the nature of such illnesses for there to be periods of unwellness, when people are at their lowest ebb, and it is our job to protect them from something that could sound appealing at that moment in time. The crux of this issue is that—subject to the point that the hon. Member for Spen Valley made about the improvements that we may now see following the amendments that we have just discussed—the Bill makes no distinction between a condition that is inevitably fatal and one that could be substantially slowed with treatment.
Dr Shastri-Hurst
My hon. Friend is making a valid argument, but I want to pick up the point made by the hon. Member for Stroud. He talked about illnesses that are inevitably progressive and cannot be reversed by treatment. For type 1 diabetes—I think that is what my hon. Friend the Member for South Northamptonshire (Sarah Bool) is addressing, as opposed to other forms of diabetes—a person either has insulin or does not.
The Chair
Order. Interventions should be pretty short, and Members really should be asking a question of the Member who has the floor, not making a mini-statement. Will they stick to that, please?
Dr Shastri-Hurst
Forgive me, Chair. I will come to the point. If the person does not have insulin, the diabetes could be treated by administering it. Does my hon. Friend accept that, in those circumstances, it would fall within this clause?
Rebecca Paul
I thank my hon. Friend—another doctor. I would suggest that diabetes cannot be reversed, but can be managed with treatment. All I am trying to do is make sure that that piece is picked up. I think we all agree that we would not expect diabetes to fall within the terminal illness diagnosis.
No fewer than 15 clinicians and medical researchers mentioned diabetes in written evidence. Other conditions are mentioned too. Two consultant physicians—Rosemarie Anthony-Pillai and DP Whitehouse—say that those on medication for heart failure could qualify if they stopped taking their medication. Dr David Randall, a consultant nephrologist at the Royal London Hospital, sets out in written evidence the example of a young man who has benefited from a kidney transplant but stopped his immunosuppression medication. That would lead to transplant rejection and, likely, death within a few months. Would he qualify as terminally ill if we were not to agree to these amendments?
Lewis Atkinson
The examples that the hon. Lady gives of the refusal of life-preserving treatment—for example, stopping insulin—would inevitably lead to death, so why does she believe that anyone in such a situation would need to seek voluntary assisted dying?
Rebecca Paul
I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.
In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.
Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.
It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,
“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]
UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,
“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]
In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,
“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”
In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,
“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”
They added,
“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”
It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.
Naz Shah
First, I will speak to amendments 9 and 10, then to amendment 234, and then to my own amendments 48 and 402. I hope it is in order to note that the hon. Member for South Northamptonshire (Sarah Bool), as the hon. Member for Reigate already mentioned, is a type 1 diabetes sufferer. Amendments 9 and 10 both concern matters of which she has a personal understanding.
Amendment 9 would mean that an illness, disease or medical condition, the progress of which can be managed or controlled by treatment, would not be characterised as a terminal illness. The amendment provides that instead of saying that the illness cannot be “reversed” by treatment, the Bill should say that its progress cannot be “controlled or substantially slowed”. The amendment is clearly a most important one. It seeks to prevent illnesses that can, in fact, be treated effectively from being classified as terminal illnesses.
The amendment would work to mitigate two very serious risks posed by the Bill. First, it would make it more difficult for someone who, for whatever reason, wished for an assisted death to qualify for that process by failing to follow a reasonable course of treatment. I do not say that the amendment would make it impossible for anyone not to do so, but it is an important safeguard. It would also provide a safeguard against the expansion of those conditions that would qualify people for assisted death.
My hon. Friend the Member for Spen Valley and members of the Committee have repeatedly praised the Oregon law, but we surely do not want to follow that example in every way, since we know that in Oregon, sufferers of anorexia have been able to access assisted dying. Again, I do not say that the amendment would make it impossible to expand the list of conditions, but it would make it harder. My hon. Friend has said repeatedly that she wants the Bill to have the strongest safeguards of any assisted dying law in the world, so I hope that she will join me in voting for amendment 9.
Naz Shah
I agree very strongly with the sentiments expressed by my hon. Friends the Members for Spen Valley and for Penistone and Stocksbridge, and I hope that the Committee can later return to the state of palliative care in this country.
I underline that the matter of the six-month prognosis was not some minor detail on Second Reading; rather, it was a central plank of the arguments made by those who said that we should pass the Bill because its safeguards were the toughest of any assisted dying law in the world. It is less than three months since my hon. Friends spoke those words, and yet we are already discussing an amendment that would remove the six-month prognosis.
Kim Leadbeater
We need to be fair to the hon. Member for Harrogate and Knaresborough, who has said that he will not press the amendment to a Division. Indeed, it would not be something that I would support if he did do so, for the reasons that my hon. Friend has stated. I also think that we need to give him credit for ensuring that the voices of people with neurodegenerative conditions, such as MND, Parkinson’s and Huntingdon’s, are heard. They are an important part of this debate, whatever our views might be on the tightness that is needed in the Bill.
Naz Shah
I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to.
The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject.
We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence.
I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.
Jack Abbott
Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.
Naz Shah
I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.
Tom Gordon
I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?
Naz Shah
The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.
I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death
“can reasonably be expected within 6 months.”
My amendment would change that so that for a person to be considered terminally ill their death would have to be
“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?
Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.
I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.
My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.
Sean Woodcock (Banbury) (Lab)
I think we all accept that prognosis is quite difficult, but one reason why I think this is fundamentally important is that a member of my constituency Labour party was given a prognosis of 12 months in 2012. Last year, they were out delivering leaflets for me in the general election. That is why it is so important that we make sure we get this right. I am sure that my hon. Friend has examples of her own. Is that what is guiding her to press this amendment?
Naz Shah
It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.
Naz Shah
I thank my hon. Friend for his intervention. Actually, there is nothing in the Bill that suggests that. We can only imagine and try to empathise as much as we possibly can with any person who has been given a diagnosis of six months to live. In that six-month process, they might not wait; as my hon. Friend, who is a doctor himself, has said, this is about autonomy. They might not wait until they get to a position where there is a lot of suffering; they might not wait to see those six months out. They might decide they do not want to take that risk, when actually they might have lived another 15 years, another year or another two years. That is the point of this amendment.
Kim Leadbeater
My hon. Friend is making a powerful speech and it is good to have this debate. May I ask her opinion on two things? One is that, as my hon. Friend the Member for Stroud has alluded to, the research around the world shows that between 30% and 40% of people who sign up for assisted death never actually do it, because they do get better or because the treatment makes their condition manageable—or because they have a death in a different way. What are her thoughts on that? The other thing to point out is the number of people who we know, sadly, are taking their own lives because they are terminally ill at the moment. I go back to the point that I make quite regularly: no one is monitoring that—
The Chair
Order. As I said before, these are interventions seeking clarification. They are not mini-speeches.
Kim Leadbeater
Just to clarify, my understanding is that it is between 600 and 700 people who take their own lives; it is suicide.
Naz Shah
If we take that number, then that 30% or 40% who do not take that decision is maybe a few hundred people. However, the truth from Professor Sleeman’s evidence is that we are talking about thousands of people who are misdiagnosed every single year. She was talking about 3,516 who lived longer than expected. Yes, I recognise and value my hon. Friend’s comment that 30% or 40% of people do not take up assisted dying, but—perhaps I will talk about this when I move on to the next amendment—there is also a risk. If we go back to the Bill promoter’s intention to make the wording tighter, then surely this is a safeguard that she would support, just to ensure that we are making it as tight as we possibly can.
Jake Richards (Rother Valley) (Lab)
Can my hon. Friend clarify for me what she means by “reasonable certainty”, and how that differs from the clause as drafted? Can she also explain why, in her amendments, normal language around the burden of proof, such as “on the balance of probabilities” or “beyond reasonable doubt” is not used?
Naz Shah
First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention.
I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment.
To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it.
Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment.
Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening.
We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada.
I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said:
“Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.”
The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others.
In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition.
The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v. L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows:
“The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.”
The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.
Kit Malthouse
My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.
Naz Shah
Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.
My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.
The Chair
Order. With the greatest respect to Members, this is not a dialogue; this is a debate. This is not chit-chat. It is a very serious issue and interventions of that nature are not helpful.
Kim Leadbeater
On a point of order, Mr Dowd. If something is said that we know not to be correct, what should we do?
The Chair
That is ultimately a matter of opinion. If the hon. Lady wishes to ask the hon. Member for Bradford West a question and get clarity from her, that is fine, but this is becoming a dialogue. People cannot hear what is being said. I want the Committee to be run in an appropriate fashion. We have rules of debate in the House and I am trying to apply them. Otherwise, there lies perdition and chaos.
Naz Shah
I am happy to withdraw that comment, given the welcome intervention of my hon. Friend the Member for Spen Valley. When intervening on me in a previous sitting of the Committee, she stressed that most of the assisted deaths of people with eating disorders took place in the Netherlands and Belgium. The survey that Ms Roff and her colleagues carried out did find that the Netherlands and Belgium had more assisted deaths of people with eating disorders than Oregon, but it also found that Oregon itself had more than one such case. California and Colorado have also accepted people with eating disorders as subjects for assisted death. I remind hon. Members that, as I noted earlier, Oregon has a considerably smaller population than England and Wales. In 2023, the last year for which we have full data, Oregon had a population of just 4.25 million. By contrast, England and Wales had a population of 60.85 million—more than 14 times higher.
Perhaps it is the case that Oregon has had two assisted deaths for anorexia sufferers, as one witness told the Committee. In England and Wales, we have 14 times the population of Oregon. If it became legal for sufferers of advanced-stage anorexia to take their lives by assisted dying, we would almost certainly have more cases than Oregon.
Dr Opher
Does my hon. Friend not believe that an eating disorder is reversible? Under the Bill’s provisions, if someone has a condition that can be reversed by treatment, they would not be appropriate for assisted dying. Is she saying that eating disorders are not reversible?
Naz Shah
Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.
Danny Kruger
I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.
Dr Opher
Actually, there is a lot of debate about whether terminal states of eating disorders actually exist or not, so they cannot be said to be a real thing in that way. Some people in the profession think they certainly do not exist, so I would contest the point made by the hon. Member for East Wiltshire.
Naz Shah
I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.
Kit Malthouse
Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—
The Chair
To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.
Naz Shah
I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.
Kit Malthouse
I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.
Naz Shah
I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:
“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”
move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.
Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.
That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.
Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.
There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.
I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:
“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”
They further say:
“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”
On my amendment 402, they say:
“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”
On amendment 48, they say:
“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”
They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.
Sarah Olney
I rise briefly to speak against amendment 234 in the name of my good and hon. Friend the Member for Harrogate and Knaresborough. I will keep it brief as I know he is not going to press to a vote.
First, the Bill that was voted on on Second Reading was a Bill for terminally ill adults in the last six months of their lives. I do not believe attempting to amend the scope of the Bill in Committee is what the House has asked us to do. I think the House voted for a Bill that was specifically for people within the last six months of their lives and that to be amending it—although I accept he is not putting it to a vote—is not in order.
Secondly, I want to reflect on Professor Sir Chris Whitty’s oral evidence to the Committee about how difficult it is to determine when somebody is within six months of the end of their life and how much more difficult it would be to determine whether someone is within the last 12 months of their life, notwithstanding that we are talking about a very specific category of people. For me, that really does give rise to the fear that we would not be able to make a specific determination on whether somebody was in the last 12 months of their life. There would be a risk that people actually have many years left to live. In the case of motor neurone disease, for example, we have seen prognoses of between two and five years, so we risk shortening people’s lives unduly. Furthermore, people might not want to make the prognosis, and therefore people who would like to have the right to end their life in their final 12 months because they have a neurodegenerative disorder might be denied that right, because it is impossible to come to such a determination.
Danny Kruger
I will be as quick as I can be. I recognise the powerful contributions that have been made on a number of the amendments. I pay tribute to the hon. Member for Broxtowe, who made a very interesting speech in support of her amendment 123. I was struck by her point that we should do what we can to reflect the reality of clinical situations in people’s lives. I very much respect the power of the arguments she made. My concern is that by changing “inevitably” to “typically”, her amendment, although it might reflect reality more closely, would widen the scope of eligibility. I am afraid I will not support her amendment, but she made an important speech about how things actually work.
I will speak briefly in support of amendment 282 in the name of the hon. Member for York Central (Rachael Maskell), and of amendments 48 and 402 in the name of the hon. Member for Bradford West. At the end, I will refer quickly to the amendments in the names of the hon. Member for Harrogate and Knaresborough and of my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer). All those amendments, with exception of the last ones, fit the Bill to the campaign—they make the Bill more accurately applicable to the people whom the campaigners have been campaigning for and whom everyone has the most sympathy with.
Amendment 282 in the name of the hon. Member for York Central would restrict eligibility to people with a one-month diagnosis only. I stress that the amendment is probing and I do not propose to press it to a vote on her behalf. She tabled it and I am speaking to it to make the point that, if we are serious about the Bill being for people who are dying and not for people who are not—for people at the very end of their life, as we hear so often—we need to be much stricter about the period of prognosis. I will not repeat points that have been made by other hon. Members, but the fact is that the six-month test is literally as good as tossing a coin. It has a less than 50% accuracy. In particular for advanced cancers and neurological conditions, accuracy is very low.
Jack Abbott
A line has to be drawn in the sand somewhere. Will the hon. Member define what an adequate timeline would look like for him to be satisfied?
Danny Kruger
The hon. Member invites me to suggest that I think it would be possible to draw a safe safeguard. I do not. I think that one month is better than six months, because with one month we can have more accuracy and doctors are more genuinely right when they say that someone is close to death at that point, while six months is much more inaccurate and 12 months is notoriously inaccurate. If we restrict the Bill by using a time limit, that limit should be as close to death as possible in my view.
Kim Leadbeater
Does the hon. Member agree that if we were to reduce it to one month, there would be absolutely no way to have the robust process set out in the Bill—or, indeed, I would argue, to have any sort of robust process?
Danny Kruger
I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.
Danny Kruger
I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.
Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.
By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.
For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.
Naz Shah
Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?
Danny Kruger
I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.
I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.
The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that
“there is nothing in the letter of the law”
to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would
“essentially eliminate the criteria of terminal illness,”
because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.
I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.
I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.
The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.
I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.
Lewis Atkinson
I rise to speak in favour of the current, tightly drawn eligibility criterion of a six-month terminal diagnosis. I agree with my hon. Friend the Member for Bradford West that that was a central plank of the Bill as introduced and as debated across the House on Second Reading. I therefore rise to speak against all the amendments tabled to the clause.
Dying people want to put their affairs in order. That includes thinking about the death that they want and how they want to spend their time with their family. Dying people do not want to die, but they do not have an option to live. I feel that the way we talk about death perhaps has not been fully reflected in the debate we have had on the amendments.
In my mind, the evidence from elsewhere is very clear that those who seek assisted dying seek approval for it, going through the safeguards—significant safeguards, as set out in the Bill—so that they can spend the remaining time with their family, with enhanced feelings of control and autonomy, removing some of the fear that causes them to ask, “What if I will have no way out of inevitable pain?” That does not mean, of course, that people wish to die more quickly. The fact that the Bill sets out a six-month eligibility criterion does not mean that people will rush to end their own lives as soon as it is possible to do so. It means that six months is the threshold at which they can start potentially exploring the options and getting through the onerous—rightly onerous—process of eight different stages of capacity checks, three different stages of approval, multiple doctors and so on, so that they have the option. Indeed, as my hon. Friend the Member for Spen Valley set out earlier, a significant proportion of people who have been approved for assisted dying elsewhere do not take up that option, because their end of life is not painful—and that is fantastic—or can be managed through palliative care. That is something that we would all want. However, knowing that they have the option significantly increases their quality of life, their ability to relax with their families and their ability to spend time with their loved ones.
Naz Shah
My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?
Lewis Atkinson
Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.
In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that
“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]
of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.
The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.
Lewis Atkinson
No, I will make some progress.
I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.
I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.
Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.
The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.
I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.
Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.
Lewis Atkinson
That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.
Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.
I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.
Dr Tidball
My hon. Friend is correct in his interpretation of the judgments in those cases, but does he agree that the evidence given by Chris Whitty to clarify his statement was helpful in clarifying that the application of the test for capacity is heavily orientated towards the gravity and complexity of the decisions to be made? That is also underpinned, as my hon. Friend underlined, by the amendment tabled by my hon. Friend the Member for Spen Valley.
Lewis Atkinson
I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.
In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.
Stephen Kinnock
As usual, I will make brief remarks on the legal and practical impact of amendments, while emphasising that the Government continue to remain neutral on the Bill and on assisted dying more broadly. This series of amendments, which I will take in turn, seeks to change the definition of “terminally ill”, either widening or narrowing the cohort of people able to access assisted dying services.
Amendment 123 would change what it is to be “terminally ill” for the purposes of the Bill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment. That would widen the pool of those able to access assisted dying services by reducing the level of certainty that a doctor must have that the illness, disease or medical condition in question is progressive—from one that is “inevitably” progressive to one that is “typically” progressive.
Amendment 9 seeks to amend the definition of “terminally ill” such that it would not include a person who has an inevitably progressive illness, disease or medical condition that can be reversed, controlled or substantially slowed by treatment. The effect of the amendment is that such a person would not be eligible for lawful assistance to voluntarily end their own life. Should the amendment be accepted, the effect would be to restrict the eligibility for assisted dying services to a narrower category of patients than is currently set out in the Bill. The amendment may make assessment of a person’s prognosis and eligibility under the Bill more extensive, as it would be likely to require an assessment of a broader range of treatment options.
Naz Shah
I apologise to my hon. Friend the Member for Sunderland Central; I was actually incorrect. The girls did not have capacity, so he was correct. However, in the cases that went before the court, those nine girls did not have capacity yet the judge made a decision that they should not be force-fed to keep them alive, and they should be allowed to die. Perhaps the Minister could comment on how the amendment would not meet that criteria. Would it fix that loophole?
Stephen Kinnock
I thank my hon. Friend for her intervention. I am just talking about the amendment to reduce the time from six months to one month. I will come on to the issue of eating and drinking in a second.
As amendment 282 would reduce the time within which the person is expected to die from six months to one month, it would also limit the number of people with a terminal illness who would be eligible for assisted dying under this legislation. Furthermore, there may be very challenging workability issues in delivering a service within one month, given the other time-dependent safeguards elsewhere in the Bill.
Amendment 51 would remove the requirement for the patient to have a six-month prognosis to be defined as “terminally ill”. If agreed to, it would expand the pool of people eligible for lawful assistance to voluntarily end their own life beyond those with a life expectancy of six months or less. In other words, it would remove the timeframe requirement of when death can be reasonably be expected.
Amendment 234 would widen eligibility to include cases of neurodegenerative diseases, illnesses or medical conditions where a person is reasonably expected to die within 12 months. Matters such as this are for the Committee, and ultimately for Parliament, to decide, but it is clear that the effect of the amendment would be to broaden the number of people eligible for lawful assistance to voluntarily end their own life under this legislation.
Amendment 10 would provide that, if treatment exists for a person’s progressive illness, disease or medical condition that alters the overall prognosis of that person’s condition, they are not terminally ill and would not be eligible for assisted dying services.
Amendment 402 would exclude a person who would not otherwise meet the definition of “terminally ill”—namely, being diagnosed with an inevitably progressive illness with six months or less to live—if that person meets that definition as a result of stopping eating or drinking. The effect of the amendment would be to prevent a person from being defined as “terminally ill” as a result of their own actions of stopping eating or drinking, or both. The Government’s analysis suggests that this may also exclude people who are terminally ill under the definitions of the Bill and who are, for various reasons, unwilling or unable to eat or drink. For example, it may include those with conditions such as oesophageal cancers, which could result in their being unable to eat or drink.
Furthermore, it is unclear whether someone who is on intravenous fluids or being fed through a feeding tube would be considered to have stopped eating or drinking under the amendment. I think that addresses the concern expressed by my hon. Friend the Member for Bradford West, but she is welcome to intervene again if she would like to. The amendment could therefore lead to uncertainty over the person’s eligibility for assistance under the Bill.
The Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. Questions around the definition of terminal illness and who should be eligible to access voluntary assisted dying under the legislation are matters for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee in considering the Bill and the amendments tabled by various Members.
Kim Leadbeater
Colleagues will be pleased to know that, despite my copious notes, I do not intend to speak for very long, because I believe we have had a very thorough and robust debate on these issues. The Minister makes a valuable point on amendment 402, which I do not think anyone else raised. Coincidentally, it relates to the person in the Public Gallery this morning, whose mum had a horrible form of cancer and had to have her tongue removed. She would have stopped eating or drinking, but it was not a choice; it was an inevitable result of her condition. She would have been excluded from having an assisted death, which I am sure is not the intention of my hon. Friend the Member for Bradford West.
We have had an excellent debate and covered a lot of ground. I do not intend to add anything more on this group of amendments. I will only say that if we get a move on, we might be able to get through clause 2 before we close at 5 o’clock.
Juliet Campbell
I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Amendment proposed: 9, in clause 2, page 1, line 24, after “reversed” insert
“or the progress controlled or substantially slowed”.—(Rebecca Paul.)
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Question put, That the amendment be made.
Danny Kruger
I beg to move amendment 12, in clause 2, page 2, line 2, at end insert—
“(c) their illness, disease or medical condition is found on a list that the Secretary of State may by regulations specify.”
This amendment would require an illness, disease or medical condition to be specified in regulations that may be made by the Secretary of State to be considered a terminal illness under the Act.
The Chair
With this it will be convenient to discuss amendment 13, in clause 2, page 2, line 10, at end insert—
“(4) Regulations under subsection (1)(c) are subject to the affirmative procedure.
(5) The Secretary of State may, where they consider it appropriate, make regulations that expire after twelve months from their being made to include temporary additions to the list under subsection (1)(c).
(6) Regulations under subsection (5) are subject to the negative procedure.”
This amendment is consequential on Amendment 12 and specifies regulations under that amendment must be made by the affirmative procedure. Temporary additions could be made by regulations subject to the negative procedure.
Danny Kruger
I will be fairly brief in speaking to the amendments, but they go to the heart of things. We have tried to tighten the Bill by excluding medical conditions from the definition of a terminal illness; I am very pleased that the Committee has accepted that tightening. We have also sought to exclude illnesses that are consequent on mental disorders and disabilities; we have not succeeded with that tightening. We have further sought to tighten the Bill by circumscribing the prognosis period more precisely.
The amendments would tighten the Bill further by explicitly listing the illnesses that qualify. The argument is quite straightforward. The problem that we are trying to address is that, under the Bill, it will be up to doctors and potentially to the court—or a panel, if that is where we go—to decide whether a particular condition is terminal. It would be set by case law and by medical doctors deciding what conditions qualify.
Lewis Atkinson
I rise to speak briefly in opposition to the amendments. When the chief medical officer gave oral evidence to the Committee, the hon. Member for Richmond Park asked him:
“Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?”
The response was very clear:
“If I am honest, I think it would be extremely difficult.”
It is difficult in both directions, because some illnesses or diseases can be terminal, but are not necessarily terminal. People can live with prostate cancer for many years. Setting out in the Bill a list of specific diseases or illnesses that would be eligible risks achieving exactly the opposite of the amendment’s intention. To quote Professor Whitty again:
“Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting…I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
Further to the point that the hon. Member for East Wiltshire made about on judicial oversight, my understanding is that giving power to the Secretary of State to make a list that includes only some diseases is absolutely inviting action through the courts on the reasonableness of why one disease is on the list while others are not. We would end up in much more of a legal quagmire than we otherwise would. The safeguards that we have talked about, as to eligibility criteria, terminality and capacity, are in the Bill as drafted. Those are the safeguards that we need. A list would further muddy the water and would create confusion.
Stephen Kinnock
I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.
I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it
“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.
The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.
Danny Kruger
I sense that the wish of the Committee is probably not to accept the amendment, so I do not propose to press it to a Division, but we have just heard quite clearly, in response to the amendment, that the Bill is essentially permissive. Once again, we have declined to put clear parameters around the eligibility for this new law. We have heard specific conditions mentioned so many times in the course of the debates over the preceding months. It is a shame that we are not prepared to state those conditions clearly in the Bill, with the opportunity for Parliament to amend them over time.
I end by echoing a point that the hon. Member for Spen Valley made about the importance of good data. I hope that if the Bill passes, we will have the best data collection in the world. I am afraid to say that data collection is not good in other jurisdictions. Nevertheless, it is possible to see how often in Oregon, Australia, Canada, and Europe, albeit in a minority of cases, conditions that most people would not recognise as deserving of assisted dying, including anorexia, arthritis, hernias and diabetes, are listed as causes of death. Indeed, so is frailty, as I discussed earlier.
My fear is that if we pass the Bill, we too—if we do data collection properly—will have a shameful appendix to the annual report showing that people have had an assisted death for reasons that most people would regard as inappropriate. I will leave it there. I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Amendment made: 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)
This amendment is consequential on Amendment 399.
Amendment proposed: 402, in clause 2, page 2, line 6, at end insert—
“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”—(Naz Shah.)
This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.
Question put, That the amendment be made.