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.

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[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.

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[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.

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[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.