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

Lewis Atkinson Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah (Bradford West) (Lab)]

Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?

I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.

However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.

As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.

[Lewis Atkinson (Sunderland Central) (Lab)]

Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?

[Naz Shah]

I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.

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[Daniel Francis]

I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.

We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.

If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.

I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

[Lewis Atkinson]

I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.

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[Rebecca Paul]

I thank my hon. Friend—another doctor. I would suggest that diabetes cannot be reversed, but can be managed with treatment. All I am trying to do is make sure that that piece is picked up. I think we all agree that we would not expect diabetes to fall within the terminal illness diagnosis.

No fewer than 15 clinicians and medical researchers mentioned diabetes in written evidence. Other conditions are mentioned too. Two consultant physicians—Rosemarie Anthony-Pillai and DP Whitehouse—say that those on medication for heart failure could qualify if they stopped taking their medication. Dr David Randall, a consultant nephrologist at the Royal London Hospital, sets out in written evidence the example of a young man who has benefited from a kidney transplant but stopped his immunosuppression medication. That would lead to transplant rejection and, likely, death within a few months. Would he qualify as terminally ill if we were not to agree to these amendments?

[Lewis Atkinson]

The examples that the hon. Lady gives of the refusal of life-preserving treatment—for example, stopping insulin—would inevitably lead to death, so why does she believe that anyone in such a situation would need to seek voluntary assisted dying?

[Rebecca Paul]

I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.

In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.

Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.

It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,

“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]

UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,

“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]

In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,

“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”

In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,

“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”

They added,

“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”

It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.

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[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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[Naz Shah]

My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?

[Lewis Atkinson]

Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.

In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that

“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]

of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.

The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.

[Naz Shah]

Will my hon. Friend give way?

[Lewis Atkinson]

No, I will make some progress.

I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.

I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.

Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.

The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.

I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.

Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.

[Naz Shah]

In the cases that went before the court, the judges, in nine out of 10 cases, found that all those young ladies did indeed have capacity to refuse their food, and it was as a result of that that their deaths became inevitable. Will my hon. Friend comment on that?

[Lewis Atkinson]

That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.

Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.

I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.

[Dr Tidball]

My hon. Friend is correct in his interpretation of the judgments in those cases, but does he agree that the evidence given by Chris Whitty to clarify his statement was helpful in clarifying that the application of the test for capacity is heavily orientated towards the gravity and complexity of the decisions to be made? That is also underpinned, as my hon. Friend underlined, by the amendment tabled by my hon. Friend the Member for Spen Valley.

[Lewis Atkinson]

I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.

In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.

[Stephen Kinnock]

As usual, I will make brief remarks on the legal and practical impact of amendments, while emphasising that the Government continue to remain neutral on the Bill and on assisted dying more broadly. This series of amendments, which I will take in turn, seeks to change the definition of “terminally ill”, either widening or narrowing the cohort of people able to access assisted dying services.

Amendment 123 would change what it is to be “terminally ill” for the purposes of the Bill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment. That would widen the pool of those able to access assisted dying services by reducing the level of certainty that a doctor must have that the illness, disease or medical condition in question is progressive—from one that is “inevitably” progressive to one that is “typically” progressive.

Amendment 9 seeks to amend the definition of “terminally ill” such that it would not include a person who has an inevitably progressive illness, disease or medical condition that can be reversed, controlled or substantially slowed by treatment. The effect of the amendment is that such a person would not be eligible for lawful assistance to voluntarily end their own life. Should the amendment be accepted, the effect would be to restrict the eligibility for assisted dying services to a narrower category of patients than is currently set out in the Bill. The amendment may make assessment of a person’s prognosis and eligibility under the Bill more extensive, as it would be likely to require an assessment of a broader range of treatment options.

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My concern throughout this debate has been that we are at risk of passing a skeleton Bill. It is a long Bill, because it is complicated, but actually the key questions about how it will operate in practice—what conditions would be eligible, what drugs would be used—will often be determined not by Parliament, but either by Ministers using the negative procedure or, as in this case, simply by the panel and by doctors. If we are serious about safeguards and about preventing the slippery slope, let us insist that the Bill specifies that any further expansion or evolution is determined not out there, but in here. Let Parliament be the sovereign power that determines what is eligible and what is not.

[Lewis Atkinson]

I rise to speak briefly in opposition to the amendments. When the chief medical officer gave oral evidence to the Committee, the hon. Member for Richmond Park asked him:

“Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?”

The response was very clear:

“If I am honest, I think it would be extremely difficult.”

It is difficult in both directions, because some illnesses or diseases can be terminal, but are not necessarily terminal. People can live with prostate cancer for many years. Setting out in the Bill a list of specific diseases or illnesses that would be eligible risks achieving exactly the opposite of the amendment’s intention. To quote Professor Whitty again:

“Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting…I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

Further to the point that the hon. Member for East Wiltshire made about on judicial oversight, my understanding is that giving power to the Secretary of State to make a list that includes only some diseases is absolutely inviting action through the courts on the reasonableness of why one disease is on the list while others are not. We would end up in much more of a legal quagmire than we otherwise would. The safeguards that we have talked about, as to eligibility criteria, terminality and capacity, are in the Bill as drafted. Those are the safeguards that we need. A list would further muddy the water and would create confusion.

[Stephen Kinnock]

I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.

I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it

“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]

It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.

The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.

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

Lewis Atkinson Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

I am sorry but we have to move on.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Can I be explicit on the palliative care point? We have heard concerns from some in palliative care provision that there is anxiety that if we introduce this in the UK, there is a risk of deterioration in or failure to improve palliative care. Can you address that directly in the light of your experience?

Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.

Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.

[Sojan Joseph (Ashford) (Lab)]

Q Are you aware of any reported incidents of the misuse of medication that has been administered? As you explained earlier, patients can take the medication to their home.

Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.

We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.

We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.

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[Dr Opher]

Actually, my question has already been asked.

Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.

I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.

[Lewis Atkinson]

Q Mr Amin, given your expertise in representing these cases in the court, can I ask you for your view around the Mental Capacity Act issue regarding eating disorders and other disorders? Obviously, we have heard one version of that. Given your experience of working with UK law to the highest level, what is your assessment of this?

Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force-feeding that clinicians consider. That is my view on the anorexia side of things.

Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.

Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year-old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre-death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.

Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.

Chelsea Roff: Indeed, but a judge will be relying on doctors.

[The Chair]

Thank you. This will have to be the last question.

Terminally Ill Adults (End of Life) Bill (Money)

Lewis Atkinson Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Anna Dixon (Shipley) (Lab)]

Colleagues will know that I put forward a reasoned amendment on Second Reading. In that amendment, and in my speech in that debate, I set out some of my concerns about how the private Member’s Bill process does not allow for sufficient scrutiny to develop complex legislation on such a sensitive matter. Indeed, such a once-in-a-generation approach to suicide, death and dying and these changes need to be looked at independently and in a formal public consultation.

This House was given reassurances, both by the promoter of the Bill, my hon. Friend the Member for Spen Valley (Kim Leadbeater), and the Leader of the House, in the light of which some colleagues voted for the Bill on Second Reading to allow the process to proceed. As part of that, reassurances were given about an impact assessment, which would have included an estimate of costs. I am pleased that my hon. Friend the Minister has given assurances that an impact assessment is forthcoming, but we do not yet have it. As a result, we are very unclear at this point how much assisted dying would cost to implement.

I therefore seek clarification from the Minister and others involved on a number of questions. Will assisted dying be offered free on the NHS? How many people do we estimate will expect to exercise their right under the Bill? There are a wide range of estimates out there, based on overseas jurisdictions.

[Lewis Atkinson (Sunderland Central) (Lab)]

Will my hon. Friend give way?

[Anna Dixon]

No; I have very little time.

How much will it cost for the additional doctors, nurses and other healthcare professionals? How much time will be required to do a proper consultation? What about the lengthy paperwork? Will new clinics be set up, or will existing facilities be repurposed? What will be the costs of the lethal drugs? What about the oversight by the National Institute for Health and Care Excellence and other regulators? What about the training for healthcare professionals involved in the process, and the cost of oversight by the chief medical officer and the Registrar General, and any new data systems required?

It is clear that palliative and end of life care is in desperate need of investment; some 100,000 people die each year who could benefit from end of life care but do not receive it. If assisted dying is to be implemented, it is essential that there is equitable and free access to hospice care, so how much additional funding would be provided to hospices for palliative and end of life care under this money resolution or from elsewhere?

I fully support this Government’s commitment to fixing the NHS, establishing a national care service and providing additional investment, as they have already shown, to hospices. However, I would like the Minister to provide clarification to assist our understanding because, given our inheritance from the Conservative party, I am concerned like others that funding for assisted dying risks diverting essential resources away from end of life care, other NHS services and social care. I look forward to the Minister’s response.

[Jim Allister (North Antrim) (TUV)]

There is no more important function for Members of this House than that of being the guardians of public money. It is very hard to equate the performance of that function with signing a blank cheque, and yet that is what we are being asked to do today. One thing is abundantly clear: if this Bill passes, it will bring with it a huge financial burden in perpetuity.

[Lewis Atkinson]

On that point, will the hon. Gentleman give way?

[Jim Allister]

I would be happy to do so in a moment.

It is quite clear that the measures will impose huge costs on the health and justice budgets. Given the provisions in the Bill, is it impossible for that not to be the consequence, so when the Treasury Minister produces the financial information, will he include current Government expenditure on palliative care and suicide prevention, so that we can look at and balance what we are spending? The Bill invites the Government to move from funding charities to prevent suicide to becoming facilitators and providers of suicide.

NHS Backlog

Lewis Atkinson Excerpts

Monday 6th January 2025 Commons Chamber

[Gregory Stafford (Farnham and Bordon) (Con)]

I welcome this debate, although we have had a number of health debates over the past few sitting days that have crystallised the real problem that we see in the NHS. It is stark that none of the Government Members have mentioned covid thus far and its massive impact. [Interruption.] The hon. Member for Carlisle (Ms Minns) is pointing at herself; she might have mentioned it, but she did not set out the absolute devastation that covid wreaked on our services.

Before I came to the House, I worked for the Getting It Right First Time programme, an NHS England programme that was initially funded by my right hon. Friend the Member for Godalming and Ash (Jeremy Hunt) when he was Health Secretary, and again when he was Chancellor of the Exchequer. The programme made a significant difference in getting rid of “unwarranted variation” within the NHS, because while there is some amazing service, treatment and patient care in the NHS, we have to admit that there is also some poor and inefficient patient care.

The Getting It Right First Time programme tried to improve patient care and ensure that the worst-performing trusts were brought up to the level of the best-performing trusts; I hope that the programme will continue to try to achieve that under the current Government. Areas for improvement include high-volume, low-complexity work, such as cataract, hip and knee operations. There are massive backlogs of such procedures in the NHS that could be cleared if some failing trusts reached the level not of the top-performing trusts, but of the top quartile, or the top 10%.

[Lewis Atkinson (Sunderland Central) (Lab)]

The hon. Gentleman worked in the NHS before covid, as did I. He mentions the impact of covid, but does he not recall that in December 2019, before covid hit, standards had already fallen, and only 84% of patients were being treated within the 18 week target? Why was that allowed to happen under the previous Government?

[Gregory Stafford]

I accept that the pressure on the NHS went way beyond covid, as the hon. Gentleman will remember, but to use the Secretary of State’s term, covid was the point at which the NHS was “broken”, and it is taking a long time to recover.

The Government are right to push for more localised services, and to bring services closer to the patient. Access to GPs is a fundamental part of that, but we know that GPs are overstretched. The previous Government really pushed Pharmacy First, which was a superb programme. This Government want to go further with it, but there are disincentives for general practitioners to embrace Pharmacy First. What will Ministers do to ensure that there is no financial disincentive to work with pharmacies? If we are to deal with the backlog, there has to be a financial incentive.

What was concerning about today’s statement from the Secretary of State was the lack of genuine reform. There was a lot of rehashing of previous policies, perhaps eking them out a tad further than the previous Conservative Government did, but I think the Secretary of State himself said that if anyone is able to reform the NHS, it is a Labour Government. While I was quite interested in what he was saying as shadow Secretary of State, I have been deeply disappointed by what he has said since. It appears to me that unfortunately the union paymasters and the inertia in the NHS have captured him and his Front Bench. I hope that I am wrong, and that the Minister will tell me differently this evening, but that is what I have seen.

Locally, the reality is that there is a problem with being able to bring services closer to home. My hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) mentioned the problem of accountability for ICBs. I have the fortune, or misfortune, depending on how one looks at it, of having three ICBs in my constituency. To use a previously mentioned term, there is a lot of unwarranted variation in how they deal with my constituents, and with me as a Member of Parliament. A big issue in Bordon is that we want a brand new surgery in the area, but there has been no conversation with the ICB about how that might go ahead. Likewise, we are really keen for Haslemere hospital to move from being a district hospital to having an urgent treatment centre. It is vital that we get that moving. The community hospital in Farnham could also be somewhere treatment is done closer to home. I urge the Government not to sit back, but to use their majority and reform the NHS for the benefit of all our constituents.

Winter Preparedness

Lewis Atkinson Excerpts

Wednesday 18th December 2024 Commons Chamber

[Karin Smyth]

As I think the hon. Gentleman knows, I cannot talk about individual cases from the Dispatch Box, but we will be making announcements on that subject very shortly.

[Lewis Atkinson (Sunderland Central) (Lab)]

I thank the Minister for her statement, and also thank my recent former NHS colleagues, especially those in Sunderland, for what they will be doing over the winter. The Minister has rightly highlighted unacceptable levels of bed occupancy as we go into winter; we know that as bed occupancy increases to unacceptable levels, there is a rise in patient safety risks. What assessment has she made of the patient safety monitoring regime over the winter, linked to those risks?

[Karin Smyth]

We have made it absolutely clear, as did the NHS in its letter today, that patient safety is the watchword this winter. We have targets in relation to monitoring the performance of the system, but we absolutely want to ensure that patients are kept safe as we go through the next few months.

Income Tax (Charge)

Lewis Atkinson Excerpts

Tuesday 5th November 2024 Commons Chamber

[Lewis Atkinson (Sunderland Central) (Lab)]

It is pleasure to follow my hon. Friend the Member for Broxtowe (Juliet Campbell), who spoke movingly about her experience in the NHS, as well as the barriers she has ignored and, indeed, knocked down.

I start by paying tribute to my predecessor, Julie Elliott, who not only worked with commitment for Sunderland Central, but provided political leadership and mentorship across the north-east. Julie understood that organising and advocating on a regional basis is often the best way to deliver for our communities. I hope to follow her example. It is the honour of my life to be in the House of Commons representing the city by the sea that I love.

I am pleased that my first debate contribution is about the budget and the NHS, for what is our purpose here if not to improve the economic conditions of our constituents and the care available to those we serve? Health and wealth have always been linked—twin assets—as families like mine, forged in the Durham coalfield, know well. My grandparents were only able to toil at the pit, in the munition factory or in the home for as long as they were healthy. Working-class communities have always feared illness and injury, not just in its own right but because the resulting inability to work was disastrous for family finances. The introduction of the NHS and national insurance by the Attlee Government was intended to protect against such calamities. We have important work to do to repair and renew those civilising protections today.

The link between inequalities of health, wealth and power has been impressed upon me by the privilege of working for two decades in NHS North East. Whether managing dentistry, mental health or cancer services, I saw at first hand how the poorest generally experience the poorest health outcomes. I intend to spend some of my time in this place working to right that situation.

The qualities of innovation and hard work have always been the building blocks of Sunderland’s economy. From the introduction of glassmaking in Britain at Bede’s monastery of St Peter’s, through the education of lightbulb inventor Joseph Swan, to becoming the UK’s leading digital smart city, Sunderland has always been a home of innovation. We have always made things. For 600 years, that meant ships. At our peak, the people of Sunderland were hard at work “macking” a quarter of all ships produced globally each year, and we were likely dubbed “Mackems” as a result. Wealth from shipyards and pits built Sunderland, but such work often caused a thirst, so it was handy that the most popular stout in the country was produced in the centre of town, at the Vaux brewery, until the second world war interrupted production.

In that war, as in others before and since, the patriotic people of Sunderland answered their country’s call. This weekend, I will be honoured to play a small part in what is thought to be one of the largest Remembrance services outside London, reflecting the high number of veterans in our city and the sacrifices made by so many, including my constituents who served in Iraq and Afghanistan.

While the bravery and fortitude of Sunderland’s people has never been lacking, too often they have faced the headwinds of economic change without a Government on their side. By the end of my childhood, the pits, the shipyards and even Vaux had all gone. But the people’s spirit and an understated determination remained, and it is thanks to them that our city is now on the up.

I am not just referring to top-of-the-Championship Sunderland AFC, a football club that has provided me with more agony and ecstasy than even the Labour party has managed. Our Stadium of Light stands on the site of the Monkwearmouth colliery, but now instead of coal we produce a rich seam of talented players, such as Jill Scott, Jordan Pickford, Lucy Bronze and Chris Rigg.

I also celebrate the workers at the most productive car plant in Europe, Nissan, which although not in my constituency is the modern cornerstone of our city’s economy, continuing our advanced manufacturing heritage and skills.

Elsewhere around the city, where there was previously decline we now see new beginnings. On the banks of the Wear, we no longer have shipyards, but we do have the Crown Works studio site, ready to be transformed into a landmark film studio. Where the brewery once stood, we have cranes in the sky for Riverside Sunderland, the most ambitious city centre regeneration project in the UK. We have our excellent university, with particular strengths in media and healthcare, and we have a city that loves a good time, where growing hospitality and cultural businesses provide plenty of decent days and nights. It might be a show at the Sunderland Empire, a meal at one of our many excellent British-Bangladeshi restaurants, or a gig at one of our independent venues.

Where passion and identity are strong, there is music—and Sunderland is a music city. Having produced talent from Dave Stewart to the gone-too-soon Faye Fantarrow, our city’s artists reflect who we are, honour our proud heritage and point towards our bright future as an inclusive city.

Nowadays, we celebrate that Mackems are found in mosques and churches, our community centres, our gurdwara and our social clubs, and now there are even two Mackems in the Cabinet. All my constituents, no matter what their background, deserve a strong economy and quality public services. Because Sunderland was built on hard work, its people rightly expect nothing less from their politicians. It is in that spirit that I recognise the privilege of being in the House on behalf of our entire community. I will do what I can to serve them and repay the trust they have placed in me.

[Madam Deputy Speaker (Caroline Nokes)]

I call Adam Dance to make his maiden speech.

Oral Answers to Questions

Lewis Atkinson Excerpts

Tuesday 23rd July 2024 Commons Chamber

[Alice Macdonald (Norwich North) (Lab/Co-op)]

1. What assessment his Department has made of the effectiveness of the NHS dental contracting framework.

[Lewis Atkinson (Sunderland Central) (Lab)]

17. What assessment his Department has made of the effectiveness of the NHS dental contracting framework.

[Jon Pearce (High Peak) (Lab)]

23. What assessment his Department has made of the effectiveness of the NHS dental contracting framework.

--- Later in debate ---

[Wes Streeting]

It is appalling that Norfolk and Waveney are so poorly served in terms of dentistry. There are only 36 dentists per 100,000 people, compared with the national average of 53, so when my hon. Friend says that her community is a dental desert, Members should know that it is the Sahara of dental deserts. We will work with partners to ensure that patients across the country can access a dentist when they need one. I am aware, not least thanks to her advocacy and the advocacy of other Labour MPs across Norfolk, of the University of East Anglia’s proposal, and I would be delighted to meet her and my colleagues.

[Lewis Atkinson]

My constituents in Sunderland Central tell me that NHS dentistry is broken. It is not just that they cannot access routine care, but that if they are struck with, for example, excruciating toothache, they cannot access urgent appointments either. I therefore ask my right hon. Friend what steps he is taking, alongside the welcome reform of the dental contract, to ensure that urgent dental services are available locally in places such as Sunderland.

[Wes Streeting]

I welcome my hon. Friend; he certainly has big shoes to fill in Sunderland Central and is a worthy successor to his predecessor. He is absolutely right that alongside contract reform we need urgent action. That is why we committed to providing 700,000 additional urgent appointments and recruiting dentists to where they are most needed, and I am delighted to report that dentists stand ready to assist. We are working with the BDA urgently to get those appointments up and running as soon as possible, and we will keep the House informed on progress as we do.