Terminally Ill Adults (End of Life) Bill (Twenty-ninth sitting)

Jack Abbott Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

Brought up, and read the First time.

[Jack Abbott (Ipswich) (Lab/Co-op)]

I beg to move, That the clause be read a Second time.

I am minded not to press the new clause to a vote, but I have a few brief remarks to make. The new clause does what it says on the tin. It applies to the rare—I underline the word “rare”—cases in which two family members, particularly a couple, both receive a terminal diagnosis within a relatively short space of time and would therefore qualify under the Bill.

For very many couples, there would be absolutely nothing untoward. Many people will make a decision in their best interests, particularly if they have been married or partners for a significant period. The new clause stipulates that if any medical or healthcare professional receives any indication that a patient is seeking an assisted death at the same time as one of their family members, especially a partner, both the co-ordinating doctor and a registered medical practitioner from the person’s GP practice must be notified and the patient must be referred both for a psychiatric assessment and for an assessment by a social worker. The assessing doctor would then have to take into account any opinion provided by the psychiatrist and social worker and share it with the assessing doctor.

I appreciate that the new clause may be a little too prescriptive at this stage, but I would like the matter to be considered on Report and to be given further deliberation by the Government if the Act is passed and goes into the implementation phase. I think all Committee members can appreciate why such a scenario, rare as it may be, needs to be considered for the reasons we have discussed today in relation to coercion or other sorts of abuse, whether it is obvious or more pernicious. We know that in certain situations there will be people, particularly if they are married or in a long-term partnership, for whom such aspects may be at play. I am sure that they are a rare minority of cases, but I hope that these things are considered. Greater scrutiny is probably needed in these scenarios.

Essentially, the new clause would allow for a more comprehensive and thorough assessment of people’s wellbeing and social context, including their relationship. I am not minded to press it to a vote at this stage.

--- Later in debate ---

[Kim Leadbeater]

I thank my hon. Friend the Member for Ipswich for tabling the new clause. I have some concerns around the broad definition of “family member”. I also feel that it would be potentially excessive if there were a coincidental situation in which, tragically, two members of the same family were terminally ill. I worry about the extra burden it would place on them of going through an even more rigorous process when they had both been assessed under the thorough regime of the Bill, including the multidisciplinary panel. However, the point is worth discussing and I welcome the fact that my hon. Friend has raised it.

[Jack Abbott]

I appreciate the points made by the Minister and by my hon. Friend the Member for Spen Valley. “Family member” is a relatively non-specific description, but I think the thrust of the new clause is clear. Clearly, it is directed particularly at couples.

I fully understand why my hon. Friend does not want people to have to go through a huge number of extra layers; I have said at length several times that I do not want people at the end of their life to go through an awful period of sitting in endless meetings, assessments or courtrooms. However, I reiterate that although they would be relatively exceptional, there will be situations in which coercion and other sorts of pressure are potentially at play. I agree that that may be an incredibly rare scenario and that two people may just want to go through the stages towards the end of life together, but extra checks may need to happen at some point to ensure absolutely that there is nothing untoward such as other sorts of pressure or coercion, rare as that might be.

--- Later in debate ---

[Dr Tidball]

I beg to move, That the clause be read a Second time.

This is the final new clause of the Committee. As I said in support of new clause 25 and associated amendments last week, I want to strengthen the voice of disabled people in the Bill. New clause 35 would require the voluntary assisted dying commissioner to establish a disability advisory board that would report annually on the implementation and impact of the Act on disabled people. The new clause has been designed to ensure that disabled people have a voice at the heart of the Bill and an ongoing role in monitoring its impact.

The disability advisory board model reflects a structure that was used at the Department of Health to implement the Autism Act 2009 and monitor the implementation of its provisions, statutory guidance and strategy. It was a highly effective body. Including a disability advisory board structure on the face of the Bill would entrench the board in the work of the commission, enabling a long-term and iterative structure in which disabled people could report on the reality of the impact of the Bill on disabled people across this country.

This reflects comments made by Dan Scorer of Mencap in oral evidence. He said that if the Bill was passed,

“We would want to see strong representation from patient groups…as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280-81, Q367.]

The board must therefore consist of

“(a) people who have a disability under the Equality Act 2010,

(b) representatives from disabled people’s organisations, and

(c) other such persons or organisations as the Commissioner considers relevant to the impact of the Act on disabled people.”

The commissioner would, within six months of being appointed, have to appoint a programme board to advise on the implementation of the Bill, and annually thereafter report on the impact of the Bill’s operation on disabled people.

The clause reflects the learning of Dr Greg Mewett, the specialist palliative care physician from Australia who gave oral evidence to the Committee about the Australian implementation taskforce, which includes a strong disability advocate. My new clause would go further, by including a rigorous reporting process that requires the advisory board to report to the Secretary of State and the commissioner within six months of the commissioner being appointed, and annually thereafter. It also provides:

“The Secretary of State must, within three months of receipt of any report under subsection (3), lay the report before both Houses of Parliament.”

In the oral evidence sessions, I asked witnesses for their views on what structures or mechanisms could work to facilitate the opportunity to hear the voices of disabled people in monitoring the implementation and impact of the Bill were it to pass through Parliament. Dr Miro Griffiths said:

“I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services…I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 145, Q183.]

Subsection (2)(b) and (c) would provide for this.

Professor Tom Shakespeare corroborated the benefits of such an advisory board, calling it a “very good idea.” Importantly, Fazilet Hadi, from Disability Rights UK, stated:

“Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill.”

Poignantly, she went on:

“It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 175, Q227.]

There is, and there should be, nothing about us without us.

As a disabled Member of Parliament, I am grateful to my hon. Friend the Member for Spen Valley for inviting me to sit on this Committee. Through this new clause and my earlier new clause 25, I have worked hard to put together a structure that ensures that disabled people are firmly at the table in the process of monitoring the implementation and impact of the Bill. I urge members of the Committee to support new clause 35.

[Jack Abbott]

At this point, I pay tribute to my hon. Friends the Members for Penistone and Stocksbridge and for Bexleyheath and Crayford. They have consistently tabled really important amendments that are very close to my heart, measurably improving the Bill.

I am briefly speaking in favour of new clause 35. We have had a number of good amendments about ensuring proper representation for vulnerable people during the process. We have also had a lot of discussion about the very important need to regularly monitor and report back on the Bill. This new clause brings all this together, ensuring that there is real oversight, with real thrust and a point to it. It is not good enough just to report back some statistics; the question is what we do with them. Having this sort of panel, with expertise and life experience, would be a significant step forward for people with disabilities, learning needs and anything else that might be included.

Once again, I pay tribute to my hon. Friends for this work. I am fully supportive of the new clause.

[Sarah Sackman]

I hope to be brief, given it is the witching hour.

This new clause would require the voluntary assisted dying commissioner to establish within six months of their appointment a disability advisory board. The advisory board must include representation from disabled people and disabled people’s organisations. Within six months of its appointment, the advisory board must report to the Secretary of State and the commissioner to advise on the implementation of the Act for disabled people. We anticipate that the advisory board’s annual report will be separate from the commissioner’s, and that in time this may be subject to a level of integration between the two bodies. Practical arrangements for the advisory board would require further consideration, but the Government can see no workability reason why this should not go ahead.