Terminally Ill Adults (End of Life) Bill
Debate between John Hayes and Marie Tidball(2 weeks, 3 days ago)
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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.