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

Debate between Marie Tidball and Jack Abbott

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[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.

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

Debate between Marie Tidball and Jack Abbott

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Tidball]

Q But you believe that your members would be able to pick up on and identify issues such as coercion?

Professor Ranger: I do. They are professionals, and I believe they would be able to.

[Jack Abbott]

Q My question, which relates to some of the points made earlier, is for Glyn Berry. Your organisation has recommended a new role: the approved palliative care professional. To go into the detail a bit more, you make a number of recommendations on what that role would include, such as ensuring that the person has the mental capacity to make the decision. First, are you therefore saying that this new role should sit alongside the two-doctor process, which has already been outlined in terms of final decision making? If the approved palliative care professional felt, for example, that this person did not have mental capacity, should they be able to, as it were, stop the process?

Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.

Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.

In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.

Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.

It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.

One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.