Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)

Danny Kruger Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[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.

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[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 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.

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[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—

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[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.

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[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.

[Naz Shah]

I concur with the hon. Member’s remarks.

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[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.

[Naz Shah]

The hon. Member talks about the amendment being probing. Does he know why we went for six months? Was it was based on research? I am not sure whether he is aware or can help me understand that.

[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.

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Division 9

Ayes: 8

Noes: 15

[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.

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[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.

Terminally Ill Adults (End of Life) Bill (Fourth sitting)

Danny Kruger Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Stephen Kinnock]

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

[Danny Kruger (East Wiltshire) (Con)]

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

[Danny Kruger]

Q It does, very helpfully. Can I come back to you quickly? You point out that to suffer is essentially a subjective experience, so it is very difficult for somebody from the outside to determine whether somebody else is suffering to a certain threshold. By that reasoning, it should simply be the case that people who feel that they are suffering intolerably should be eligible. Why do you not think that that is what we should have in the law?

Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.

Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.

The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.

Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.

I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.

--- Later in debate ---

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

[The Chair]

I call Simon Opher.

Medicines and Healthcare Products Regulatory Agency

Danny Kruger Excerpts

Thursday 16th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will be as quick as I can be, Madam Deputy Speaker. I want to talk about over-prescription and the vaccines. I acknowledge my role as the co-chair and past chair of the beyond pills all-party parliamentary group, which the hon. Member for Stroud (Dr Opher) chairs in this Parliament. I thank the secretariat for the great work it does to support the group.

We have a crisis of over-prescription in our country, with the rates of prescription drugs being given to people going up vertiginously. Prescriptions have doubled over the last 12 years. Nearly 9 million people—one in five adults—are on antidepressants, which is way too high a figure. Many people should never have been put on these drugs—they should have been offered non-chemical alternatives—and they should be supported to withdraw. I very much hope that the MHRA and the Government more widely will heed the calls we are making on the APPG for better training of GPs, better labelling of these drugs and withdrawal services for people who want to come off them.

In addition to social prescribing, which I am sure the hon. Member for Stroud will talk about from his experience, I want to mention the important potential role of digital therapeutics, which are not properly commissioned by the NHS but could be a big part of the answer.

I want to talk briefly about the role of the MHRA in over-prescription, particularly with respect to anti-depressants. We know from evidence, from anecdote and from coroners’ reports that SSRIs—selective serotonin reuptake inhibitors—can cause people to take their own lives. There are dozens of documented cases. The most prominent of those recently has been the tragic case of Thomas Kingston, whom I knew and whose family I have been speaking to since his death. Tom shot himself last February after being put on SSRIs. In fact, he was put on that SSRI after another SSRI caused him to feel absolutely awful, so he was put on two in very quick succession.

The coroner for Gloucestershire, who conducted the inquest, recommended much clearer communication of the risks of these pills, and she is not the first coroner to make that recommendation. I pay tribute to The Times for its campaigning to highlight the fact that so many coroners’ reports have not been heeded by the authorities. I wish they had been, as it might well have saved many lives.

[Esther McVey]

The number of people who have taken their lives after coming off SSRIs shows that it is not a one-off or rare. There are many people, including one of my constituents, aged only 25, who took her life. I congratulate my hon. Friend on raising this issue. What more can we do to raise awareness of the effects of withdrawal from these antidepressants?

[Danny Kruger]

The tragedies that we read and hear about are bringing to light the chronic problem of over-prescription in our society. I am afraid that the MHRA is to blame. A review is under way, but it does not sufficiently recognise the direct harms that these pills can induce in people. I hope that through better labelling and regulation, and a better culture of alternative prescriptions, we can reduce the tragedies that we are so familiar with.

Let me quickly comment, following on from my hon. Friend the Member for Christchurch (Sir Christopher Chope), on the experience of the MHRA during the covid epidemic. The vaccines were developed at a frantic rate. We can be very impressed by the speed of the taskforce and pay tribute to the work of the private sector, particularly our world-leading research base. The Government managed to act at great speed, largely because they bypassed Whitehall. But significant questions remain, which my hon. Friend raised, about whether the vaccines are genuinely safe and effective.

It is right that people ask questions about the data on excess deaths and wonder if there is a connection with the vaccine—that is not inappropriate. Ultimately, there is only one way to answer that question: to have the data. However, we do not have access to that data. The Government hold it and, extraordinarily, they have made it available to the pharmaceutical companies that produce the vaccines, but not to researchers—individual-level death data that shows who was dosed with what vaccines and which of them died.

In a debate in the House last April, and previously in correspondence with Ministers, I clearly and simply asked for that data to be made available to researchers, anonymised as appropriate. The UK Health Security Agency has admitted that the data exists, but has refused to release it, almost unbelievably, because of the risk to the mental health of the relatives of the dead. That begs the question, does the data show a link between the vaccines and those deaths? The information tribunal is due to rule on that matter shortly, and I fervently hope that common sense will prevail and the data can be made available to disprove the link, so that our minds and those of our constituents can be put at rest. There is also a case with the information tribunal about the data held by the MHRA on the vaccines’ safety for pregnant women. Again, the agency has been withholding that data for two years.

Let me finish by observing, in the light of the comments made by hon. Members across the House, that we have a genuine problem with the regulation of the medical industry and of medical products. I very much welcome the appointment of R. F. Kennedy to the role of Health Secretary in the United States. He will shake things up over there. Perhaps the Minister can be our own RFK over here, and bring some genuine transparency to the health system.

--- Later in debate ---

[Alison Bennett (Mid Sussex) (LD)]

I thank the right hon. Member for Tatton (Esther McVey) for bringing forward this really important debate and for her excellent opening speech, which was very informative. In the interests of time, I will keep my remarks brief.

The Medicines and Healthcare products Regulatory Agency is tasked with vital work, and we all agree that it is there to protect and promote public health. As a number of Members have set out, it is concerning that despite the MHRA’s obvious importance, it clearly faces a number of challenges that need to be addressed. The Cumberlege review highlighted a conflict of interests, because the MHRA relies on fee income from pharmaceutical companies; as the hon. Member for Stroud (Dr Opher) said, this is a case of the agency marking its own homework. It is not a great way to set up its funding.

The hon. Member for Dewsbury and Batley (Iqbal Mohamed) made a really important point about Brexit, which is the elephant in the room. As with so many parts of our economy, Brexit caused major disruption to the pharmaceutical industry. Among other things, the loss of the prestigious European Medicines Agency from London to Amsterdam damaged trust in the UK’s pharmaceutical investment space.

[Danny Kruger]

Will the hon. Lady give way?

[Alison Bennett]

In the interests of time, I will not.

Brexit caused significant confusion for companies looking to sell products from Great Britain to Northern Ireland. It has also slowed down the time in which novel medicines and treatments can be approved for use, as pharmaceutical companies have understandably prioritised obtaining a single approval, allowing access to 27 markets via the EMA.

Meanwhile, strict affordability models imposed by the National Institute for Health and Care Excellence mean that companies face a further hurdle before their products can reach patients. Again, that diminishes the attractiveness of the UK market post Brexit. To help address this issue, the MHRA introduced the international recognition procedure a year ago to streamline the authorisation process by incorporating assessments from trusted regulatory partners worldwide, including the EMA. However, that relies on those partners having already approved the products, so UK patients will inevitably still have access to medicines later than people in other countries, including EU member states. When I met representatives of Roche Diagnostics, based in Burgess Hill in my constituency, they told me about the industry’s serious concerns that the additional GB-specific conformity checks required could be prohibitively expensive and lead to significant delays.

As things stand, the forecast is looking gloomy. My Liberal Democrat colleagues and I are committed to addressing these issues head-on, and to helping the MHRA become world leading. First, we are pushing to expand the MHRA’s capacity by halving the time for treatments to reach patients suffering from illnesses such as cancer. Secondly, we encourage the Government to fully implement the recommendations of the Cumberlege review, including on compensation, corrective surgery and psychological support for those who were failed and who suffered from faulty devices and drugs. Thirdly—this is vital—the Government should actively seek a comprehensive mutual recognition agreement with the EMA to promote faster access to new and novel medicines and medical devices. That would reduce red tape, cost and friction, providing hope for those who need access to these lifesaving and life-enhancing medicines and devices.

Hospice and Palliative Care

Danny Kruger Excerpts

Monday 13th January 2025 Commons Chamber

[Danny Kruger (East Wiltshire) (Con)]

I will not focus on assisted dying/assisted suicide this evening, because as the hon. Member for Wimbledon (Mr Kohler) said in a good opening speech, we are all united in this place in our desire to see improvements in the palliative care system, but I feel compelled to make this simple point of fact. Studies and research show that in jurisdictions and countries around the world that have introduced an assisted dying/assisted suicide law, the investment in and the quality of palliative care has declined, relative to those that do not have an assisted dying/assisted suicide law. That is for reasons that are fairly comprehensible. That is a fact. I implore the House: let us fix our palliative care system before we consider opening up the law on assisted dying.

The United Kingdom is, of course, the birthplace of the hospice movement, and we have some of the best palliative care services and specialists in the world, but as we have heard this evening, our system simply is not working. We have demand for palliative care and hospice services on a scale that was never anticipated in the post-war years in which the NHS was developed. The challenges of growing demand have been sadly exacerbated by decisions that the Government have made, as we have heard.

[Sir Edward Leigh (Gainsborough) (Con)]

On Friday, I went to St Barnabas hospice in Lincoln, our local hospice, which does wonderful work, and talked to its chief executive officer, who is tearing his hair out. Because of the national insurance increase, he is losing £300,000 a year. He pays his nurses less than the local hospital; he has to. He is literally funding the NHS and cutting his own service in the hospice. I beg the Government to think again about the national insurance increase on hospices.

[Danny Kruger]

My right hon. Friend makes absolutely the right point. It echoes the experience of hospices across the country. Prospect House, which is on the edge of Swindon and is in my constituency of East Wiltshire, receives only 23% of its funding from the taxpayer. It faced a significant deficit this year, so it took immense pains and steps to bridge its funding shortfall. There was a huge response to a public fundraising appeal, and it raised over £170,000 from the local community, but that was before the Budget. The effect of the national insurance increase alone on Prospect House is £170,000, so the public’s generosity has been entirely wiped away by the Chancellor, and Prospect House is back exactly where it was.

Julia’s House in Devizes is a children’s hospice, and the most wonderful, moving place that I have visited in my time as an MP. It has had a similar experience. It gets only 8% of its budget from the taxpayer. Its deficit has gone up from £900,000 before the Budget to £1.1 million now. We therefore desperately need a comprehensive review of palliative care.

I pay tribute to the hon. Member for York Central (Rachael Maskell), and to Baroness Finlay in the other place. They are leading a review of palliative care, with a view to coming forward soon with recommendations for the Government on how to improve the system. Indeed, thanks to Lady Finlay’s amendment to the last Government’s Health and Care Act 2022, integrated care boards are required to commission palliative care. Unfortunately, no money was attached to that amendment, and as we have heard, the way in which some ICBs commission care is not good enough. I regret, for instance, that the ICB in our area will not commission Julia’s House, the children’s hospice that I mentioned, so we need a better commissioning model.

I take issue with the point made by the hon. Member for Birmingham Erdington (Paulette Hamilton) that ICBs cannot find the money for these services in their budgets. They could if they did their job properly and commissioned services locally. They should be able to move budgets around. The fact is that if proper investment is made in palliative care, money is saved elsewhere in the NHS; that is the crucial point. Expensive bed stays in hospital would be reduced, as would demand on ambulances and other services. It should be possible to improve palliative care within the ICBs’ current envelope.

We do not want a system of enforced uniformity, or a great new national bureaucracy. I am concerned to hear some hon. Members suggest that we nationalise the system; I do not think that is right. We need to ensure that ICBs can do the job that they need to do, and that hospices can innovate as they want.

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

I pay tribute to the hon. Member for Wimbledon (Mr Kohler) for securing the debate and making such a powerful and thoughtful opening speech. I thank hon. Members from across the House—there are too many to list. It would be impossible to capture the richness of the contributions made. Something like 28 Back-Bench Members made speeches—I am sure Madam Deputy Speaker will correct me if my numbers are not quite right. It was an excellent debate, and I thank everybody for their contribution. I thank all those who work or volunteer in the hospice and palliative care sector for the deeply compassionate care and support that they provide to patients, families and loved ones when they need it most.

This Government are committed to building a society in which every person receives high-quality, compassionate care, from diagnosis through to the end of life. We will shift more care out of hospitals and into the community, to ensure that patients and their families receive personalised care in the most appropriate setting. Palliative and end of life care services, including hospices, will have a vital role to play in that shift. The reality is that we have a mountain to climb. Our health and care services are on their knees, but this Government will strain every sinew to build them, and to create a health and care system that is once again fit for the future.

In England, integrated care boards are responsible for the commissioning of palliative and end of life care services to meet the needs of their local population. To support ICBs in that duty, NHS England has published statutory guidance and service specifications. While the majority of palliative and end of life care is provided by NHS staff and services, we recognise the vital part that voluntary sector organisations, including hospices, play in providing support to people at end of life, as well as to their loved ones.

Most hospices are charitable, independent organisations that receive some statutory funding for providing NHS services. The amount of funding each charitable hospice receives varies both within and between ICB areas. The variation is dependent on demand in the area, and on the totality and type of palliative and end of life care provision from NHS and non-NHS services, including charitable hospices, within each ICB footprint.

We understand the financial pressures that hospices have been facing, which is why last month I was truly proud that this Government announced the biggest investment in hospices in England in a generation. It will ensure that hospices in England can continue to deliver the highest-quality care possible for patients and their families and loved ones.

[Danny Kruger]

I also welcome that, and congratulate the Minister on getting that money out of the Treasury, but will he acknowledge that there is a difference between capital and revenue? Hospices urgently need support for their day-to-day running costs, not just more money to support the capital. They also need capital support, but that is less crucial.

[Stephen Kinnock]

I take the hon. Gentleman’s point, but hospices face a range of pressures. The capital expenditure injection that we have provided will help them in the round. Clearly, anything that helps a hospice with its budget in the round, be it capital or revenue, will help the hospice.

We are supporting the hospice sector through a £100 million capital funding boost for adult and children’s hospices, to ensure that they have the best physical environment for care. There is also £26 million in revenue funding to support children and young people’s hospices. The £100 million in capital funding will deliver much-needed improvements—from refurbishments to overhauling IT systems and better facilities for patients and visitors—during the remainder of 2024-25 and throughout 2025-26. The investment will help hospices to improve their buildings, equipment and accommodation, so that patients continue to receive the best care possible.

Hospices for children and young people will receive a further £26 million in revenue funding for ’25-26 through what was known until recently as the children’s hospice grant. That investment demonstrates the Government’s recognition of the importance of integrating services to improve the treatment that patients receive. Furthermore, through our plans for neighbourhood health centres, we will drive the shift of care from hospitals to the community, which will bring together palliative care services, including hospices and community care services, so that people have the best access to treatment through joined-up services.

International Health Regulations

Danny Kruger Excerpts

Tuesday 14th May 2024 Commons Chamber

[Danny Kruger (Devizes) (Con)]

(Urgent Question): To ask the Secretary of State for Health and Social Care if she will make a statement on the ongoing negotiations on the World Health Organisation pandemic agreement and amendments to the international health regulations ahead of any votes at the World Health Assembly that starts next week.

[The Minister for Health and Secondary Care (Andrew Stephenson)]

I congratulate my hon. Friend on securing this urgent question, and I am grateful for the opportunity to update the House. I want to start by making three promises. First, the Government will only accept the accord and targeted amendments to the international health regulations if they are firmly in the United Kingdom’s national interest, and no text has yet been agreed. We will only accept the accord and amendments by the World Health Assembly and adopt them if it is firmly in the UK’s national interest to do so. Secondly, this Government will only sign up to measures that respect our national sovereignty. Thirdly, under no circumstances will we allow the WHO to have the power to mandate lockdowns. That would be unthinkable and has never been proposed. Protecting our sovereignty is a British red line.

Let me now dispel three myths about the negotiations. First, there is the myth that the negotiations are being led by the WHO. They are not being led by the WHO; they are entirely led by member states. Secondly, there is the idea that we would give away a fifth of our vaccines in the next pandemic. That is simply not true. Of course, we are a generous country and companies may make their own choices to donate vaccines, but that would be and should be entirely their decision. Countries are discussing a voluntary mechanism to which UK businesses could sign up, if they wish, to share vaccines in return for information they may need to develop their products.

The third point is about transparency. This is a point I take extremely seriously, as one who campaigned so hard for this Parliament’s sovereignty. It is not common practice for the Government to give an update on live negotiations, but I met some interested parliamentarians last week to discuss their concerns. I also had the pleasure of leading a Westminster Hall debate in December on these negotiations, which was attended by my hon. Friend and many others, and I will continue to meet him and other concerned parliamentarians as we act in the national interest. Effective agreements can help us to deliver smarter surveillance, swifter pathogen and data sharing, and faster development of pandemic vaccines, tests and treatments that would save lives and protect people both in the UK and around the world.

[Danny Kruger]

Can I say how much I appreciate the commitments that the Minister has just made? I want to acknowledge the good work that he and indeed his predecessors have been doing in Government ahead of the World Health Assembly that meets next week. I am very pleased to hear the commitments he has just made.

My concern is not with the Government’s position, but with the WHO itself. I appreciate the Minister’s point that member states are leading on these proposals, which is worrying in itself, but we know what the real agenda of the WHO is from the drafts that have been submitted in recent months. It wants to have binding powers over national Governments to introduce all sorts of restrictive measures on our citizens; it wants to be able to direct the health budgets of member states; and it wants to introduce global digital health passports and other measures.

The WHO is an organisation that aspires, in words that are still in the draft treaty, to be

“the directing and coordinating authority on international health work, including on pandemic prevention, preparedness and response”.

I appreciate that no text has yet been agreed, which is why it is important that we have a debate, but the proposals in the latest draft published last month are concerning enough. They require national Governments to agree to a whole series of commitments, which will be binding under international law if the UK signs up to them. These cover surveillance of the health of the population, commitments on funding both in the UK and abroad, emergency authorisation of new vaccines or speeded up authorisation processes, giving some vaccines to the WHO to distribute, potentially authorising national Governments to introduce the compulsory vaccination of travellers, and giving very wide discretion to the director general of the WHO to act on his own initiative.

The Government still have the opportunity to oppose the treaty and the regulations as they are currently drafted, and I appreciate that we are waiting to see the final text in the coming days, but can I ask the Minister to clarify very explicitly from the Dispatch Box what the Government’s red lines are? I heard what he said, but could he go a little further on the detail of what he means? Will the Government oppose any text that binds this or a future Government in how they respond to health threats? Finally and crucially, will the Government comply with the CRaG—Constitutional Reform and Governance Act—requirement to put the treaty to a ratification vote in Parliament?

[Andrew Stephenson]

I thank my hon. Friend for the constructive way in which he and other parliamentarians have engaged with this subject matter and the challenges it presents. As I said in my opening remarks, no text has yet been agreed. I set out some of our negotiating red lines, and I am happy to confirm from the Dispatch Box that the current text is not acceptable to us. Therefore, unless the current text is changed and refined, we will not be signing up to it.

My hon. Friend asks how the treaty will be ratified if we reach a position to which the UK Government could agree. The UK treaty-making process means that the accord is of course negotiated and agreed by the Government. As he will know, Parliament plays an important part in scrutinising treaties under the CRaG process and determining how international obligations should be reflected domestically. However, it is important to remember that, because the exact form of the accord has not yet been agreed, the parliamentary adoption process will depend on under which article of the WHO constitution the accord is adopted.

World ME Day

Danny Kruger Excerpts

Wednesday 1st May 2024 Westminster Hall

[Sir Sajid Javid]

I thank the right hon. Member for her intervention, and I agree with her on both points. She first emphasises the importance of the Government’s final plan being a proper cross-Government plan; I hope the Minister will speak to the cross-Government nature of the work that he is leading on their behalf. I also agree with her point about local health support. That must also be addressed and covered in the final plan that is published. I have heard very similar stories from constituents and others, and I completely agree with what she said. I thank her again for that intervention.

When I committed the Government to developing a cross-Government delivery plan, I stated in a written statement to this House:

“officials will work with stakeholders ahead of publishing the delivery plan later this year.”

Despite the commitment that the delivery plan would be published by the end of 2022, it was not until August 2023 that an interim plan was published. In the ministerial foreword to that interim delivery plan, the Minister’s immediate predecessor—my hon. Friend the Member for Faversham and Mid Kent (Helen Whately)—stated:

“The final delivery plan will be published later this year”.

That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment.

I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess—or at the very latest, just after.

[Danny Kruger (Devizes) (Con)]

I pay tribute to my right hon. Friend for the leadership that he has shown, and continues to show, on this issue. I have been contacted by Phoebe van Dyke, a young woman living in my constituency who is struggling with ME. She is concerned about the extent of the skills of the general medical profession: too many of the doctors she encounters do not understand enough about the condition. Can my right hon. Friend assure me that the delivery plan that he wants the Government to bring forward will ensure that there is much better training across the range of medical professionals, so that they have the skills to understand the condition?

[Sir Sajid Javid]

I assure my hon. Friend that that is definitely what I want to see in the plan; perhaps more important now, however, is to hear that commitment from the Minister. It is touched on in the interim plan, but we all want to see that issue, among the others, addressed in that final cross-Government plan.

The interim delivery plan set out some of the current challenges that we must address to improve outcomes and experiences for individuals with ME. We must ensure that the final delivery plan focuses at least on two key areas: outcomes and experiences. However, making progress in these areas also requires us to address more fundamental problems. For example, there is a huge cultural problem, when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments. It is estimated—this number is often cited; I use it myself—that about 250,000 people are living with ME in the UK, but even that figure is 10 years old, highlighting the lack of data and research in this field. Without a clear dataset and understanding, tackling the issue of course becomes an even bigger uphill battle.

That is why there are research projects such as DecodeME. They are vital because they help to increase understanding and they serve as a critical platform for future work.

International Health Regulations 2005

Danny Kruger Excerpts

Monday 18th December 2023 Westminster Hall

[Danny Kruger (Devizes) (Con)]

I am very pleased to be able to speak in this debate. I thank all the petitioners and members of the public who are interested in the debate, and the hon. Member for Lancaster and Fleetwood (Cat Smith) who introduced it. It is worrying that so few Members are present. I am always proud to act in concert with my band of brothers here—we happy few who seem to fight on multiple fronts. This is a fringe issue in Parliament, as demonstrated by the empty Benches, but significant numbers of the public have a real interest in this topic, so what is going on?

I think the explanations are partly that it is a complex matter. It requires significant delving into pretty abstruse documentation and websites. As the debate goes on, it is not always thrilling. It is also that we debate issues of principle, such as the abstractions of sovereignty and individual rights, that often fail to get traction in the media. Although occasionally generating headlines, they do not generate proper attention in Parliament or the media.

The fundamental reason why the topic and the proposed regulations and treaty from the World Health Organisation have not generated the sort of disquiet that we few Members feel among our colleagues, the wider public and the media is that we want, as individuals and citizens, to trust in the Government when it comes to healthcare. We really do. That is why we have such a commitment to the NHS in our country. We want the state to be trusted, authoritative and capable when it comes to our health. We instinctively recoil at suggestions that there is a problem when it comes to the management of healthcare, and yet, as we have heard today from colleagues who put the details very well—I will not reiterate the points that have been made—there is clearly a difficulty, a challenge, a problem with the proposed regulations and treaty.

It is suggested by the World Health Organisation and the Governments who are contributing to the design of the regulations and the treaty that the WHO should move from being responsible for identifying pandemics on behalf of countries, and towards taking responsibility for co-ordinating the response to pandemics. That is an enormously significant change. It would co-ordinate the response of nation states and how they managed their health care. We have heard expressed very well the threat that that represents; it could mean enforced mandates, forced lockdowns and so on. I echo the call on the Minister to address the question whether the World Health Organisation will be able to impose a lockdown, or any other intervention, without the consent of Parliament.

I would also like the Minister to reflect on the provision in the proposed regulations that suggests that the World Health Organisation would require countries to tackle misinformation and disinformation. We must remember that in January 2020, the organisation aspiring to this power denied that there was human-to-human transmission of covid-19. For many months, it denied the possibility that the virus had a human origin and originated in a Wuhan facility. This is the organisation that we propose giving the power to intervene in national debates, and to close down discussion about the origins and appropriate response to pandemics under the guise of tackling misinformation and disinformation.

We should be concerned about the value of the World Health Organisation, given its record, and we should, I am afraid, have the same scepticism about our Government’s role. The trust that we all desperately want to have in healthcare has been badly tested by the experience of recent years. I echo many of the points made by my right hon. Friend the Member for Rayleigh and Wickford (Mr Francois) about radicalisation; we both experienced that radicalisation over the course of the covid experience. We went from a position of trust in the state to profound scepticism.

I want to call attention to a new book that has come out, to which I contributed the afterword.

[Dame Maria Miller (in the Chair)]

Order. I do not think that we do advertising in here.

[Danny Kruger]

Okay. Forgive me. I will not advertise the book, although I derive no benefit from it, I should emphasise. It is written by the campaigners UsforThem, who did such good work in calling attention to the effect of the lockdowns on children, and who became radicalised through the experience of covid. UsforThem has written a very good book about the lack of accountability for the response to covid. I do not share some of its concerns about particular decisions made by particular officials or Ministers, but I absolutely share its concerns about the failure of accountability in the system as a whole.

The inquiry into the whole covid episode, which we are all watching, is performing a fairly useful function in identifying misdemeanours, confusions, and, in a rather whodunnit way, which Ministers, officials and advisers deserve individual blame. What we are really getting out of it, however, is evidence that the system as a whole failed. There is no point in identifying the culpability of individuals when the fundamental problem that the inquiry, and the experience of us all, demonstrates is that the British state failed.

On the regulations, as I said in April, during the last debate we had on this subject in this place, the problem during the whole covid episode was not the lack of international co-operation; there was a very high, remarkable, degree of that. Almost every country did exactly the same thing, following China’s example. What we did not have enough of was independent decision making at nation state level. The bits that worked at nation state level were times when individuals and communities on the ground, local government, local public services and local businesses took the initiative to collaborate and develop their own responses, and took responsibility for supporting communities. That is what we needed at the national level, too—more independent decision making, while obviously collaborating and sharing information about what works.

I recognise the point made by the hon. Member for Lancaster and Fleetwood. I hope that the Minister will say that the Government are committed to ensuring that British national sovereignty is reflected in the wording of any new treaty. I am afraid—we are familiar with this from current debates—that peppering legislation with the language of sovereignty is not sufficient. What we really need is the practice of sovereignty and the declaration of principles. Principles are only valid in so far as they are put into practice. We want actual practice of the principle of sovereignty through the treaty that emerges, and in any amendments to the regulations.

I conclude with four questions for the Minister, who I hope will be able to answer them. First, when will we see the next iteration of the draft regulations? I had understood that they were expected now. Secondly, which Minister is responsible for negotiating the treaty and the regulations? Is it him or a colleague? I would also be interested to know which civil servants are involved. We knew who the civil servants negotiating Brexit were. I wonder who has been delegated to the WHO and is working on our behalf there.

Thirdly, colleagues raised the issue of the WHO mandates potentially imposing a very significant bill on the taxpayer. Has work been done to quantify the potential cost to the taxpayer of implementing the requirements of the treaty? Finally, I appreciate that the Minister is probably not in a position to do so today, but will the Government commit to publishing their red lines—what they will and will not accept? Vague commitments to preserving sovereignty are not sufficient. What exactly will be acceptable and not? I appreciate that the negotiations are going on with other states, but I think it would be appropriate for our Government, at this advanced stage of the negotiations, to declare publicly what they are and are not prepared to cede, by way of our independence.

Mental Health Treatment and Support

Danny Kruger Excerpts

Wednesday 7th June 2023 Commons Chamber

[Danny Kruger (Devizes) (Con)]

It is a pleasure to follow the speech of the hon. Member for Oldham East and Saddleworth (Debbie Abrahams), who is a great champion of this cause. I am very proud to work with her on the all-party parliamentary group for prescribed drug dependence, which, after this debate, I am going to ask her to co-chair with me.

I want to call the House’s attention and that of Hansard to the speech made by the hon. Member for Bermondsey and Old Southwark (Neil Coyle). The distressing and powerful story he told of a constituent of his will remain with me as a terrible example of the state of so many of our constituents and of mental health services that do not work properly.

I welcome this debate, and I am afraid to say that I do recognise many of the descriptions given by Members on both sides. I want to call attention to the excellent services provided in my constituency of Devizes by the Green Lane Hospital, a mental health hospital that has been there for many years. However, even there we have many cases of constituents feeling that they have been let down and of genuine difficulty in accessing the services that are needed in time. Despite the good efforts made from the top of the system to the bottom, we simply are not doing well enough, so I welcome the debate, and I recognise the general point being made.

Of course, I agree with the argument put forward by the Opposition that we need more mental health services. The question is what those services should be, how they are organised and, indeed, whether we should use services as the frame for this whole debate. I wonder whether the term “services and relationships” would be more appropriate, and Members have mentioned the primacy of relationships. The fact is that we do not fully understand all the neurological origins of mental health conditions, but we do know that they are exacerbated by social circumstances, and that while medical treatment can help, what really helps is good relationships.

I know this from my own experience. For many years, I ran a project working in prisons and with ex-offenders, and we saw so clearly that, while of course the official and the essential responsibility for crime and criminality rests with the individual, it is usually relationships and relational skills or the lack of them that lead somebody into crime and into prison, and it is relationships and relational capacity and skills that help people to get out of an offending lifestyle. We also know this very well from all the evidence in studies of addiction, which is very closely correlated to mental health.

What do we do? There is consensus that we need more services and better services, but my concern is that we will end up focusing the system’s efforts on quantifiable measures or quantifiable inputs—most of all, the prescription of pills and pharmaceutical treatments—so we will end up medicalising mental health, just as we medicalise so much physical health. I chair the APPG on prescribed drug dependence, as I have mentioned. The research that the APPG has supported, particularly by Dr James Davies of Oxford University, shows that a fifth of adults are on antidepressants, many of them because they cannot get off these pills, even though they are only supposed to be prescribed for a certain time. We spend £500 million a year on prescriptions for medication that people should not be on, according to the guidance for those pills.

I worry about the trend towards the medicalisation of mental health, and I particularly worry about the Government’s major conditions strategy, which I welcome. We cannot have a focus just on pharmaceuticals; we have to make it much wider. It should not just be about services, but about the relationships that support good mental health. I am pleased there is a strategy on mental health and there does need to be top-down action, but I would like it also to focus on undoing this over-medicalised model. We need more training for GPs to understand the social relationships at the heart of mental health, including how to support people who have acute conditions. We need more funding for social prescribing—that has been mentioned—which is a tremendous initiative. We need support for withdrawal services and a helpline for people who are addicted to prescribed drugs.

Overall, however, we need a bottom-up approach. I respect Labour’s plan for more access hubs for mental health, more school mental health workers and more staff, but really we need system reform. The hon. Member for Tooting (Dr Allin-Khan) mentioned the community mental health approach, and I like that phrase, but I think it includes much more than just more hubs and more staff. We need a whole system reform that prioritises the civil society organisations, families and community groups that have such a powerful role to play in supporting people with mental health.

Lastly, I draw attention to the new developing model called outcomes partnerships, whereby the public sector pays for results—not for inputs and not even for outputs, but for actual demonstrable improvement, whether it is in healthcare or mental health. It brings together all the different providers from civil society, the public sector and, indeed, businesses—we have mentioned the importance of workplace training—so that we get all the different players involved in a person’s life, and so that the funding is more local and can be used on the preventive agenda, which is so important. Rather than just trying to pour more money into the top of the NHS and thinking that is going to work, we need to fund it from the bottom up.

[Several hon. Members rose—]

NHS: Long-term Strategy

Danny Kruger Excerpts

Wednesday 11th January 2023 Commons Chamber

[Danny Kruger (Devizes) (Con)]

I put on record my appreciation and thanks for the NHS staff who serve my constituents in Devizes in Wiltshire, particularly those at the Great Western Hospital in Swindon and the Salisbury District Hospital, our local doctors and pharmacists, and care workers.

I accept the reasons that the Secretary of State gave earlier for the pressures that the NHS is under, which are largely immediate and covid-related. There was a recent policy that led to many of those problems, of which Labour was the principal cheerleader, and we are now seeing the reckoning of those lockdowns. It is no surprise that we have 10 times the usual number of flu admissions to hospital and double the number of delayed discharges.

It is also true, however, that there were problems in the NHS before covid. Although we talk about the crisis in the NHS, it is a perennial crisis. When we are in Government, Labour Members talk about the crisis in the NHS, but when they are in Government, we talk about the crisis in the NHS. There has been a significant crisis throughout the history of the NHS.

The shadow Secretary of State is right to say that we need fundamental reform, but I am not sure that that is what we are hearing from him. He listed a lot of outputs that he wants to achieve, such as more staff, and a whole bunch of inputs, such as more money from the inexhaustible pot of non-dom taxation. More important than spending and inputs, however, is the value for money that the NHS needs to generate, and we have not heard a proper plan to change the systems to achieve those improvements.

The Government have a plan, which is the integration of health and social care. I support that integration and localisation. We should go further and integrate the non-specialist services that exist in our communities. Much of the demand on health and social care is driven by lifestyle and relationships, so we need to harness the immense resources of civil society to support families and communities. I end by paying tribute to the social prescribing project that the Government have introduced, which is achieving such good results.

World Menopause Day

Danny Kruger Excerpts

Thursday 27th October 2022 Westminster Hall

[Danny Kruger (Devizes) (Con)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I express my appreciation to the hon. Member for Swansea East (Carolyn Harris) and my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes) for securing the debate and for all the work they do in this space.

I want to speak briefly on the grounds of my chairmanship of the all-party parliamentary group for prescribed drug dependence. As the hon. Member for Swansea East says, one of the great tragedies in this space is the ignorance of GPs and their willingness to quickly diagnose depression or some other condition that requires prescription drugs, which are often misprescribed and people struggle for years to get off them. That comes at a huge human cost and at great financial cost to the NHS, and it takes a huge toll on our society. Our research for our APPG demonstrates that there are at least half a billion pounds of savings to be made to the health service if we stop misprescribing habit-forming, dependence-inducing medication.

What to do? I agree with the recommendations we have heard about, particularly those in the APPG report. I also look forward to the Government’s response to the report from the Women and Equalities Committee, which my right hon. Friend the Member for Romsey and Southampton North chairs. I am not sure about the value of expanding protected characteristics to include the menopause, but I would be interested to see what the Government say about that. I do not know that the Equality Act is the solution to every ill in our society, but it is a valid suggestion. Fundamentally, we need to treat each other better, at all levels.

I particularly recognise the imperative of improving training in primary care. GPs absolutely need to understand the symptoms of the menopause and not misdiagnose, disregard or belittle people who present with those symptoms. What we have heard is shocking. I particularly welcome the suggestion that the GP quality and outcomes framework should include the menopause and that training should be improved.

Then, of course, we have employers. As we have heard from my right hon. Friend, millions of people are suffering in their careers as a result of misunderstanding and discrimination against menopausal and perimenopausal women, and I echo the recommendation that all large employers should have proper menopause policies in place. Fundamentally, it is down to all of us to understand the menopause. Obviously, men do not experience it—I have to say, though, that brain fog is not confined to women—so it is a case of sympathy, not empathy. But our job, as men, is to understand the menopause, to help women in our lives who are experiencing it, and, whether as employers or relations, to be there for them and support them through it.

My daughter is here today, wondering what we are talking about. I will quickly mention my mother, who has been on HRT for many years. We hear all the terrible stories about the menopause, but my mother is a great success story of what HRT can do. She is a tremendous advocate for it, and I honour her for talking publicly about it.

I very much welcome what the Minister has to say. This should be a priority for the Government. I particularly welcome the emphasis that we need to see on women’s health, and I echo the point that my right hon. Friend the Member for Romsey and Southampton North made on that.