Terminally Ill Adults (End of Life) Bill
Marie Tidball Excerpts(1 day, 21 hours ago)
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Anneliese Dodds
I will not give way at the moment.
That is why it is important that that exclusion is put very clearly on the face of the Bill.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Does my right hon. Friend agree that clause 2(3) makes it very clear that no one can qualify for assistance under the Bill by reason only of either disability or mental disorder unless they also have six months’ terminality and capacity?
Anneliese Dodds
I am aware of what my hon. Friend quite rightly refers to. Of course, any such condition would have to be coterminous with a terminal illness, but we know—the Committee thrashed this out for a long period—that depression is often present at the same time as a diagnosis of terminal illness. We also know that concepts such as “terminal anorexia” have started to be used in certain contexts. That unfortunately suggests that, despite the many protestations of those who understandably support the Bill, there is the possibility that those subject to eating disorders will be pulled within its scope. I am very pleased that amendment 14 would rule that out—it is important that it does so. It is critical that this Chamber sends that message too, given the potential confusion about scope.
I am very grateful for the opportunity to speak to new clause 16 and amendment 14. Above all, I hope we can continue this important discussion, which is critical for so many of our constituents.
Dr Tidball
My decision to support the Bill on Second Reading was one of the hardest I have ever had to make. It required me to go into the very depths of myself and draw on my experience as a child in excruciating pain, as well as the extensive poignant experiences shared with me by my constituents. As I said then, my support was conditional on specific changes being made to the Bill in Committee. I am pleased to say that all those changes have been made. As a member of the Committee, I can tell the House that it was the most extraordinary cross-party deliberative process I have ever witnessed in my 20 years of analysing legislation as an academic and policy researcher working in disability law and policy. In Committee, I worked to strengthen the voices of disabled people, and their protection under the Bill. I moved motions to introduce clause 20 on independent advocates and clause 44, which would create a disability advisory board. These provisions are augmented today by amendments 75 and 91, tabled by my hon. Friend the Member for Spen Valley (Kim Leadbeater).
Clause 20 would establish the role of independent advocate. They would advocate for qualifying persons who engage with the Bill, so that those persons can effectively understand their options around end of life care. This would empower disabled people to be treated with the dignity and respect that we deserve. These independent advocates would be required to undertake specialist training, and would be available regardless of whether the individual is ultimately found to be eligible to request an assisted death.
Dr Tidball
I will make progress, out of respect for all those on both sides of the House who wish to make a speech.
The clause flowed directly from evidence that we heard from oral witnesses, including leading disability scholars and disability policy experts. In conjunction with amendment 75, which is before us today, those with autism, along with a learning disability or a mental disorder as defined under the Mental Health Act 1983, would all qualify for the services of an independent advocate. Amendment 75, which defines a learning disability, would also apply to clause 7, which provides for specific, up-to-date training for registered practitioners on reasonable adjustments and safeguards for autistic people and people with a learning disability.
In Committee, I was grateful for the support of my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) and, to my delight, the hon. Member for East Wiltshire (Danny Kruger) for these independent advocates, and for the Committee’s unanimous support for clause 44, which would set up the disability advisory board. That advisory board entrenches the voices of disabled people in the Bill, embedding a long-term and iterative structure for it to report on the Bill’s implementation and its impact on disabled people to the Secretary of State. Crucially, the board must consist of disabled people and representatives of disabled people’s organisations.
To build on those clauses, amendment 91 expands the duty to collect additional information about whether, immediately before death, the person seeking assistance had a disability as defined in section 6 of the Equality Act 2010, other than the disability amounting to terminal illness as defined in the Bill. So often, control is taken away from disabled people in all sorts of circumstances. I passionately believe in inclusive healthcare for disabled people. Together, all those measures will create a solid foundation to enable disabled people to have a strong voice when advocating for themselves about their choices on end-of-life care and, importantly, a seat at the table in shaping the monitoring of the Bill and providing continued scrutiny and accountability.
To conclude, there were many moments in Committee when I reflected on how I would want to live a good death, but the most poignant was when Julie Thienpont described the death of her terminally ill husband, Guy, who sought an assisted death in Spain:
“Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, ‘Don’t be afraid.’ He said, ‘I’m not afraid,’ and he winked at me just before he closed his eyes.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 258, Q334.]
May we all have the opportunity to choose a good death, wearing our cowboy boots with the love of our life by our side.
Liz Jarvis (Eastleigh) (LD)
I am grateful for the opportunity to contribute to this vital debate. It is imperative that we get the Bill right and that the protections and procedures are watertight. I thank my constituents on both sides of the debate who have written to me.
I support amendment 4, tabled by my hon. Friend the Member for Harrogate and Knaresborough (Tom Gordon), which would allow those with neurodegenerative diseases to be eligible for an assisted death if they are within 12 months of dying. Nigel Hartley MBE, the chief executive officer of Mountbatten Hampshire hospice in my constituency, told me that palliative care and assisted dying are not and should not be at odds with each other. Palliative care can provide incredible support. I am very glad that this debate has reopened the national conversation about funding for palliative care. However, as I know from my personal experience with my mum, who died last March after a seven-year struggle with Alzheimer’s, sometimes palliative care can only go so far. Amendment 4 recognises that those with neurodegenerative illnesses deserve the same compassion, control and dignity as others at the end of their lives. By extending the timeframe to 12 months, they will be given more control over their ultimate decision.
I support new clause 10, which extends the right for any professional to opt out of providing assistance under the Bill, and extends the protections to a broader range of professionals who may be involved.
I also support amendments 59 and 62, which relate to training on domestic abuse. Those amendments are critical to ensuring that the co-ordinating doctor can identify signs of domestic abuse. The inclusion of training enhances the Bill’s protective framework, as no medical professional without specific and up-to-date training on domestic abuse will be able to serve as a co-ordinating doctor. Importantly, amendment 74 defines “domestic abuse” using the language of the Domestic Abuse Act 2021, which explicitly includes coercive, controlling and economic abuse.
Amendment 63 removes any ambiguity about the scope of eligibility, and makes it clear that only terminal illness qualifies under this legislation. That clarity is essential to maintaining public trust and ensuring that the Bill is not open to misinterpretation or misuse. It can be incredibly difficult for people with disabilities, and their families and carers, to get their concerns across—they can often feel unseen and unheard—so the amendment is vital.
Finally, I pay tribute to the hon. Member for Spen Valley (Kim Leadbeater) for her work on the Bill and her tremendous courage, determination, willingness to engage and resilience. As others have said, the decision before us is fundamentally about whether we believe in an individual’s right to have choice at the end of their life. I know what my mum would have said.
Naz Shah
Thank you very much, Madam Deputy Speaker.
My amendment 14 is very much about anorexia. It has been debated and hashed out time and again. I have come to the House today and been told, while sitting in my seat, that my hon. Friend the Member for Spen Valley is minded to accept the amendment without any discussion. I do not know what risk assessments or other assessments the Government have made, so how can I speak to that amendment when I do not have those details? I can say that Chelsea Roff, an expert on anorexia, gave evidence to the Committee. I can talk about how clinicians from every single major charity for eating disorders have made it clear that if this Bill goes through, it will not be fit for purpose and people will fall through that loophole. Without the information in front of me, however, I cannot speak to the amendment.
Naz Shah
I will make some progress. I sincerely appreciate the guidance from you, Madam Deputy Speaker, from Mr Speaker and from all across this House—the Clerks have been really helpful.
I come back to the amendments. In Oregon, in the States, 60 women were given assisted death. Every single one of them—100%—were told that they had the capacity. We have an issue in this country. Some 11 cases have gone to the Court of Protection, and my understanding is that nine of them have been told that they do not have the capacity, but doctors have been given permission not to continue to feed them. That is an issue for us; there is an issue of capacity.
There is a second issue in relation to amendment 38, which I will speak to. Even if my hon. Friend the Member for Spen Valley accepts my first amendment in its entirety, word for word, we do not close the loophole with amendment 38. What if we have somebody with diabetes? The hon. Member for South Northamptonshire (Sarah Bool) spoke very passionately about diabetes. I know the experience, because I was gestationally diabetic on three occasions and dependent on insulin, and I also appreciate the risk of being a pre-diabetic. If somebody decides not to take insulin and that they do not want to have dialysis, they would bring themselves within the scope of this Bill as it is written. That is a fact.
Contrary to the many people who have been on the radio and in other places saying, “The Bill excludes people’s mental health”, this Bill does not, as it is written, say that mental health is excluded. [Hon. Members: “It does!”] It does not.
Naz Shah
No, I will make progress. I am very conscious that lots of colleagues are here. I remember that we were all sitting here in November the first time that we debated this Bill; more than 100 Members did not get to speak in that debate, and many people might not get to speak today.
I feel really disheartened. As other Members who were on the Committee have pointed out, we have spent so much time rehashing these arguments. There were opportunities to fix this Bill rather than me and others having to put down amendments, taking up time and not giving those who would otherwise have spoken the opportunity to speak.