Marie Tidball MP: speeches

Speeches

• 1 Jul 2025 · Universal Credit and Personal Independence Payment Bill · Hansard source

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  In March 2020, when the Conservative Government looked like an outlier in appearing to pursue a strategy centring on herd immunity, I felt raw, hot fear. Thinking of my toddler and what might happen if I caught coronavirus meant that I sobbed deeply. After 10 years of austerity, I knew then that disabled people would pay an enormous price, and they did: almost 60% of covid-related deaths in that first wave were of disabled people. I vowed then that I would do all I could to create a country that treats disabled people with dignity and respect. The social security system was broken by the Conservatives’ legacy of austerity and their monumental mishandling of the covid pandemic. I am now one of the only visibly physically disabled Members of Parliament. I am proud that our manifesto committed to championing the rights of disabled people, and the principle of working with disabled people to ensure that our views and voices are at the heart of all we do. My communities nurtured me growing up, and they taught me the values of fairness, equality and community. It is with a heavy, broken heart that I will be voting against this Bill today. As a matter of conscience, I need my constituents to know that I cannot support the proposed changes to PIP as drafted in the Bill. Since April, I have been engaging relentlessly with the Government at the very highest level to change their proposals, making clear that I could not support the proposals on PIP. PIP is an in-work benefit designed to ensure that disabled people can live independently. Low-level support such as PIP helps to build the bridge to the deinstitutionalisation of disabled people, keeping us out of the dark corners of hospitals, prisons and social care settings. The concessions that the Government have announced are significant, including that all recipients of PIP who receive it will continue to do so. While that will come as a relief to my 6,000 constituents who receive PIP, 4 million disabled people still live in poverty in the UK. The proposed changes to be made in Committee are still projected to put 150,000 people into poverty. I cannot accept that or a proposed points system under current descriptors, which would exclude from eligibility those who cannot put on their underwear, prosthetic limbs or shoes without support.

• 1 Jul 2025 · Universal Credit and Personal Independence Payment Bill · Hansard source

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  Absolutely, I agree. As a disabled woman, I know the added burden of menstruation, incontinence and pregnancy on disabled women, as those things intersect with their disability. Research shows that supportive, incentive-based approaches far outperform cuts or sanctions in getting disabled people into sustainable employment. To be able to vote for this Bill on Third Reading, I will be looking for further reassurances that the detail of the Bill will fulfil Labour’s manifesto commitments to disabled people. I need to see three things from the Government embedded in the amendments. First, the Timms review must not be performative. The Government must not make the same mistake twice, and co-production must be meaningful. The social model of disability must be central to that, removing barriers to our inclusion in society. Disabled people’s voices should be at the heart of decision making about our lives. The sequencing of the Timms review and decisions about future recipients need to change. Secondly, the Government must consult disabled people over the summer to understand the impact of the proposed changes from November 2026 on future claimants, to mitigate risks of discrimination and poverty for those with similar disabilities to current claimants. The Government must produce an impact assessment based on that. In fulfilling the outcomes of the consultation’s findings, they may need to reconsider the savings that result from this process. Thirdly, growth must mean inclusive growth. In implementing the £1 billion employment, health and skill support programme, there needs to be a clear target and a sector-by-sector strategy for closing the disability employment gap. That matters. The Conservatives left us with a pitiful 29% employment gap and a 17% pay gap for disabled people. As the Tories vote against this Bill today, I say loudly that that should not be read as a mark of solidarity for disabled people. Instead, they should be hanging their heads in shame, acknowledging their legacy of 14 years of failure for 16 million disabled people across our country. I am proud that our Labour Government have done much already to promote the rights of workers and opportunities for disabled people. This Labour Government now have an opportunity to build on the positive aspects of its “Pathways to Work” Green Paper to bring in a new era of policy making for disabled people that puts a laser focus on closing the employment gap. The disability sector believes that the employment gap can be reduced by 14%, generating £17.2 billion for the Exchequer. We must seize this moment to do things differently and move beyond the damaging rhetoric and disagreements of recent weeks. There is an alternative approach, in line with the Prime Minister’s statement that reform should be implemented with Labour values of fairness. A reset requires a shift in emphasis to enabling disabled people to fulfil our potential.

• 18 Jun 2025 · Crime and Policing Bill · Hansard source

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  I rise to support new clause 122, tabled by my hon. Friend the Member for North Warwickshire and Bedworth (Rachel Taylor). In 2007, Fiona Pilkington drove herself and her 18-year-old daughter, Francecca Hardwick, to a lay-by near her home. She also took the family’s pet rabbit to soothe her daughter, who had severe learning disabilities. She then set the car on fire, killing them both. An inquest two years later heard how the family had been kept virtual prisoners in their home by youths who threw stones, flour and other objects and kept up a relentless stream of abuse. At the time, the Independent Police Complaints Commission concluded that one of the police’s main failings was in not identifying the abuse as hate crime. The case prompted wider concern that many police forces were failing to properly identify hate crimes motivated by disability, and thus treating them as low-priority antisocial behaviour—something disability campaigners say too often remains the case. I am proud that last year our Labour manifesto “committed to championing the rights of disabled people and to the principle of working with them, so that their views and voices will be at the heart of all we do.” I support my hon. Friend’s new clause 122, which would implement our manifesto commitment to protect LGBT+ and disabled people by making all existing strands of hate crime an aggravated offence. The new clause would finally place the Law Commission’s recommendations on a statutory footing. As the commission has said: “It is undesirable for the current law to give the impression of a ‘hierarchy’ of victims.” The Bill will be powerful in delivering the Government’s safer streets mission and plan for change. It will help to tackle the crimes that matter most to communities but that have been ignored for too long, after 14 years of the Tory dereliction of duty on law and order.

• 16 May 2025 · Terminally Ill Adults (End of Life) Bill · Hansard source

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  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?

• 16 May 2025 · Terminally Ill Adults (End of Life) Bill · Hansard source

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  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.

• 16 May 2025 · Terminally Ill Adults (End of Life) Bill · Hansard source

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  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.

• 25 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty-ninth sitting) · Hansard source

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  Alex Ruck Keene’s sage words to me were that the problem with putting in more words is that it creates an opportunity for lawyers to find loopholes. In the example that the hon. Lady has just given, when we are talking about family relationships, I think we would all agree that, having thoroughly considered the evidence in this Committee, we do not want any interpretation of the offences set out in section 26 to exclude, for example, carer relationships. That is not a family member, but a carer might give close personal care to someone with a terminal illness. We do not want the courts to think that it was the parliamentary intention of the Committee to delimit it to only intimate or family relationships. There is a risk that the more we narrow it by example, rather than leaving the term broad, as it is currently—“person”—we risk delimiting it too far. We do not want to exclude a situation involving an offence that we hope would be brought before the courts for prosecution.

• 19 Mar 2025 · Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting) · Hansard source

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  It is a pleasure to serve under your chairship, Mrs Harris. I rise to speak to my new clause 25 and my related amendment 517. I note with pleasure that the Committee has agreed to amendment 447, which mandates the need for the code of practice. I also support amendment 394, tabled by my hon. Friend the Member for Bexleyheath and Crayford. My new clause 25 would require the Secretary of State to make provision by regulations for independent advocates to provide assistance to qualifying persons under the Bill. Amendment 517 would add “arrangements for a qualifying person…to receive the support of an independent advocate” to the list of matters provided for by the codes of practice in clause 30. The issue is deeply important to me. On Second Reading, I said: “so often control is taken away from disabled people in all sorts of circumstances. In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards.” —[ Official Report , 29 November 2024; Vol. 757, c.1052.] Those safeguards must include strengthening the voices of disabled people, both in the Bill and in the monitoring of its impact on disabled people if it is ultimately enacted. I tabled new clause 25 and the related amendment 517 alongside my proposed new clause 27, which would mandate a disability programme board to strengthen disabled people’s voices, empowering and better enabling them to be treated with dignity and respect when they are a qualifying person seeking to understand their options around end-of-life care. Subsection (3) of new clause 25 states: “The role of independent advocates is to provide support and advocacy to a qualifying person who is seeking to understand options around end of life care, including the possibility of requesting assistance to end their own life, to enable them to effectively understand and engage with all the provisions of this Act.” During one of the Committee’s oral evidence sessions, Professor Tom Shakespeare—the leading disability scholar and public policy expert—was asked which of the Bill’s measures could be strengthened to further protect disabled people. He said: “We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c.144, Q181.] My new clause responds to the evidence from witnesses during those sessions and augments proposals made by my hon. Friend the Member for Bexleyheath and Crayford. It extends those proposals in two ways. Under the new clause, “qualifying person” would include those with a learning disability, those with autism and, importantly, those who have a mental disorder under section 1 of the Mental Health Act 1983. It also extends the scope to cover those who, as set out in subsection (4), “may experience substantial difficulty in understanding the processes or information relevant to those processes or communicating their views, wishes or feelings; or…meet criteria that the Secretary of State may specify by regulations.”

• 18 Mar 2025 · Welfare Reform · Hansard source

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  After 14 years of Conservative failure, there is a 29% employment gap and a 17% pay gap for disabled people in this country. We must therefore ensure that the social model of disability is central to Government decision making, to achieve inclusive growth that enables disabled people to fulfil their potential. I welcome the Secretary of State’s proactive approach to reasonable adjustments and the £1 billion support package to get disabled people back into work where they can work, as well as her recognition that PIP is designed as an in-work benefit to enable people to live independently. Research shows that supportive, incentive-based approaches massively outperform cuts or sanctions in getting disabled people into sustainable employment. What work has she done to develop inclusive growth strategies across all employment sectors, to close the disability employment gap and the disability pay gap?

• 6 Mar 2025 · International Women’s Day · Hansard source

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  The first time I saw the Alison Lapper Pregnant sculpture in Trafalgar Square, it took my breath away. The swollen belly of Lapper spoke of a body that was loved and carried life. It said, “I exist—bodies like mine exist, and therein there is beauty. We shall no longer be invisible.” However, unlike non-disabled women, our experiences of pregnancy have not been celebrated or discussed. When I found out in 2017 that I was pregnant, I was filled with joy and a deep connection to my body and unborn child. Growing up, the absence of disabled women’s representation in discussions of sexuality, relationships, menstruation, menopause and maternity left me feeling that my womanhood did not count—that it was vitiated by my visible physical disability. In contrast, when I was pregnant, my body was no longer just a topic of medical scrutiny; my womanhood was no longer invisible. I wanted my maternity to be embraced by a healthcare system that supported me in my journey, but that was not my reality. Instead, the system was unprepared for a body like mine. Early on, I was triaged to a genetic counselling service. I was left feeling devastated. As my pregnancy progressed, there were no specialist midwifery teams, and the lack of awareness of the interaction between my disability and maternity continued. I had to be induced at 37 weeks, leading to a caesarean section. My core muscles were severely impacted and I was left debilitated. After birth, the en-suite room I was put in was inaccessible—the very space that was meant to aid my recovery became another barrier. Upon discharge, the occupational therapy team had no specialist advice on how I could breastfeed outside of my home or carry my baby. I became increasingly dependent on family members. I was exhausted and lost my confidence, not because of anything I had done, but because the structures that were meant to support me did not know how to do so. My experience came eight years after the UN Committee on the Rights of Persons with Disabilities raised concerns that the UK had failed to mainstream disabled women’s rights into healthcare. This week, the London School of Hygiene and Tropical Medicine has published a report demonstrating that disabled women are more likely to experience stillbirth, have lower rates of breastfeeding, and endure longer post-natal hospital stays.

• 26 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) · Hansard source

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  It is a pleasure to serve under your chairship, Mrs Harris. I will be supporting amendments 319 and 320 tabled by my hon. Friend the Member for Bexleyheath and Crayford. I am a great admirer of my hon. Friend’s work in championing people with learning disabilities, and his mission to give them a strong voice in this Bill. It is an area very close to my heart, having spent over a decade and a half working with people with learning disabilities and the advocacy organisations that support them. I will, however, not be supporting my hon. Friend’s amendment 339, merely because I am drafting something to strengthen those measures even further. My amendments will go beyond amendment 339 and amend the code of practice so that seeking advocacy and access to an appropriate adult applies across the pathway to those seeking assistance, not merely in relation to the content of clause 4, as in that amendment. I want to ensure that access to an independent advocate or appropriate adult is expanded to cover those with autism, a learning disability or a mental disorder, which is not currently covered by amendment 339. That will enable those people to engage with any of the provisions under this Bill through the support that they would receive from an independent advocate or appropriate adult. As I say, I am also seeking to strengthen access to such advocacy across the pathway, through seeking assistance at each stage. I have huge respect for my hon. Friend, but I want to make sure that we specifically include the language of “mental disorder”, to make sure that that particular group of people with mental health problems is able to access independent advocates, as well as those with learning disabilities and autism. I am also looking at whether we need a consequential amendment or new clause that would make the Secretary of State put in place provisions for regulations as to the appointment of persons as independent advocates in order to ensure that those seeking assistance under the legislation who have a learning disability, autism or a mental disorder can have proper access to such advocates. That would strengthen the resource provision and access for that group. I have worked closely with Mencap on the amendments that I am drawing up and will continue to do so, and I would welcome input from my hon. Friend the Member for Bexleyheath and Crayford. Although I support his intent in principle, I will be tabling amendments to cover a broader group of individuals to access such appropriate adults and independent advocates, so that they can seek and access advocacy across the pathway and period of seeking assistance. My amendments would put access to appropriate adults and independent mental health advocates on a much firmer footing in the Bill.

• 25 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Thirteenth sitting) · Hansard source

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  I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—

• 12 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eleventh sitting) · Hansard source

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  I am delighted that the right hon. Gentleman has made that point. Inserting the amendment—and the language of, and focus on, “benefit”—in a paragraph that deals with the two criminal concepts of coercion and pressure, actually undermines the existing focus of the paragraph. Does he agree that it is better and stronger to keep the focus on the two criminal concepts, which would require the mens rea—which I think some colleagues are indicating—and the actus reus, and that that is not achieved by inserting the language about benefits?

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.

• 11 Feb 2025 · Terminally Ill Adults (End of Life) Bill (Eighth sitting) · Hansard source

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  No, I will make some progress. To replace the established concept of mental capacity with “ability” would create more problems than it seeks to solve, and is not underpinned by a clear statutory basis. Furthermore, the language the hon. Lady uses in her new clause 1 only echoes the wording of the second leg of the two-stage test in the MCA, in its language of fully understanding, using and weighing the relevant information. It does not, however, have the scaffolding and clarity of the five principles set out in the Mental Capacity Act, and it is a pale imitation of the second stage of the test of capacity, which is already in section 3 of the MCA. Thirdly, the use and application of the Mental Capacity Act has been applied and litigated upon in our court system over the last 20 years, further nuancing its application in complex medical decision making and explicating, for example, the five principles in the MCA and the subsequent two-stage test for capacity. Contrary to what colleagues on the Opposition Benches have said already, it is used in cases where treatment is withdrawn. It is important to understand that in those circumstances, such withdrawal is not seen as an omission; it is seen as a deliberate act. It is therefore analogous to the usage in the Bill as proposed. Fourthly, I have deep concerns that the use of the term “ability” and the concept expounded in new clause 1 imports an ableist approach, which I do not welcome, as someone who has worked in disability rights and policy for more than a decade and a half. To return to my first argument, about the familiarity and usage of the Mental Capacity Act by medical practitioners, clinicians and the wider social care profession for two decades, many family members will be familiar with the term and used to using it as part of the wider care of people with learning disabilities, autism and mental health problems. The boundaries of those who are familiar with the concept go well beyond the walls of only medical practitioners. In oral evidence, chief medical officer Professor Chris Whitty stated that the Mental Capacity Act “is used up and down the country by doctors and nurses every day; they know it and they understand it. Although…it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, ‘Does this person have capacity?’, in almost all cases you will get six or seven identical answers, because people are used to using it.” –– [ Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.] To unleash the tiger of an unknown and untested concept of ability into a Bill that would benefit better from the well understood, measured and principled approach of the Mental Capacity Act 2005 does not best serve the patients that I know the hon. Member for Richmond Park seeks so carefully to protect. It is therefore worth laying out the paradigm that underpins the MCA and the principles it legislates for, and why it is so important to retain this at the heart of the Bill. The presumption of capacity in the Mental Capacity Act exists because it is considered a fundamental principle of respecting individual autonomy, meaning that every adult is assumed to have the ability to make their own decisions unless there is clear evidence proving otherwise. This protects against unnecessary interference in people’s lives and ensures that they are treated with dignity and respect, even if they may have a disability or medical condition that could potentially impact their decision-making abilities. I want also to reflect on the robust language in clause 2(3), which states: “For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of— (a) a mental disorder, within the meaning of the Mental Health Act 1983; (b) a disability, within the meaning of section 6 of the Equality Act 2010.” That provision, the tightly drawn limit on the need for the person’s terminal illness to leave them with only six months to live, and the third stage of the test—using the Mental Capacity Act to understand their decision making—mean that we have a strong set of safeguards.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q Dan, I am really keen that we ensure that if the Bill passes, the voices of disabled people are continually involved in understanding its impact, particularly on the issue that you have just raised. Earlier, we heard evidence about implementation taskforces that are used in other jurisdictions. I am considering tabling an amendment on an advisory council. How might we ensure that the voices of people with learning disabilities can be included in such a body? Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed. Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, 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.

• 30 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Seventh sitting) · Hansard source

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  Q This is a question for Dan Scorer. I have worked with a learning disability charity, My Life My Choice. I have done a lot of work with that charity on self-advocacy in the context of healthcare, so I am really keen to hear from you. We know there are excellent initiatives that focus on supporting people with learning disabilities to engage with advanced care planning, so that their preferences at the end of life can be respected. I just wondered whether you could share some lessons learned, particularly in relation to giving people with learning disabilities a voice and an opportunity to talk about what matters to them at the end of life, and say, as part of that, what we could incorporate into the regulations that are being developed as part of the Bill. Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion. For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options. Also, building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients. On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q My next question is to Fazilet Hadi and Baroness Falkner. First, I am passionate about ensuring that the Bill creates the opportunity to hear the voices of disabled people in monitoring the impact of its implementation, should it be passed by Parliament, and the treatment of disabled people in the NHS as a result. What structure or mechanism could work to facilitate that? Secondly, would that be applicable to all protected characteristics under the Equality Act, or do disabled people have a specific status that needs special treatment? Fazilet Hadi: We have a principle in the disabled people’s movement: “Nothing about us without us”. I suppose a simple answer to that question is that whether it is the discussions on this Bill and the voice of disabled people in shaping it, or in monitoring, disabled people must always be at the table. As you all probably know, Disability Rights UK and other disabled people’s organisations oppose the Bill, and I hope I get a chance to say why later. 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. 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. But as I said, we are opposed. Baroness Falkner: Can I touch on clause 26 and the earlier question, as well as article 2 rights? Parliament should appreciate that coercion or pressure is not necessarily something that is applied directly by other individuals. The UN published an open letter in advance of the Canadian legislation that pointed out that people with disabilities, older people, and especially older people with disabilities, may feel subtly pressured to end their lives prematurely due to additional barriers, as well as the lack of appropriate services and support. Article 2 goes to the heart of appropriate services and support, as well as the general right to life. It is important that all practical social conditions, support, care and services are in place so that people with serious or terminal illness can decide how and when to end their life freely and without coercion. On coercionary pressure, we have heard recently about social care provisions. Social care is an integral part of this story, because the data shows that it is older disabled people—disabled across a spectrum including mental health, dementia and so on—who are likely to be in care or to require social services. If we are not going to get the result of those reforms until 2028, we are told, with potentially no legislation in place for another couple of years after that—say, 2030 or 2031—then all of you in Parliament need to think about whether this is putting the cart before the horse. In deciding on these provisions, which are integrally linked to the other aspects of disability and access to care—I hope we will come on to the variable treatment of palliative care later—you need to think about whether this is the right order of things. I will leave it at that and pick up other related points later.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating: “For the avoidance of doubt, a person is not to be considered to be terminally ill” just by those statuses. I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services? Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it. Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions. That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours. Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Looking ahead to our next panel, are you aware of any serious concerns being expressed by disabled people about the Australian assisted dying laws and any risks they might pose to this group? It would be very helpful to hear any recommendations you have with regard to building safeguards into the law that we are scrutinising. Dr McLaren: Throughout the roll-out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand. Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap. I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.

• 3 Dec 2024 · Employment Rights Bill (Sixth sitting) · Hansard source

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  I thank my hon. Friends the Members for Birmingham Northfield and for Gloucester for their ably made speeches outlining the very good and pragmatic reasons for the measure. They made points about ensuring that there is a good preliminary process to prevent litigation and laid out all the evidence with regard to the Law Commission. The shadow Minister asked the Minister about principle, which my hon. Friends the Members for Birmingham Northfield and for Gloucester also touched on. It is clear that, after 14 years of Conservative Members not considering principle when it comes to access to justice, we are making these changes particularly for disabled employees and women who often have very complex lives. Disability is not static—it is dynamic, and health conditions fluctuate—so three months is a very short time period for people to put a case together if they have complex and fluctuating health conditions. It is right that the measure brings that time period up to the level of other equalities cases. It is also fair to say that many working people have a huge amount to juggle in their day-to-day lives. For me, it is a point of great principle that this Government want to make it easier for them to access their rights and to access justice by giving them more time, being cognisant, as we are, of the many challenges that they might face just to keep a roof over their heads and to keep their family in a stable and supported situation. The need to strengthen access to justice in such circumstances is important. We heard a great deal in the evidence presented to us about the many barriers for various groups and about the effect of the measure on women. It will give women an opportunity to have a longer period of time at the most challenging and complex moments of their life, such as during pregnancy and post birth, which seems to be eminently sensible and principled.

• 3 Dec 2024 · Employment Rights Bill (Fifth sitting) · Hansard source

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  I thank the Minister for his speech so far. We heard a lot from the Opposition about the cumulative impact on business, and I wonder whether he might say something about the cumulative benefit for workers. We know that 2 million zero-hours workers may benefit from the changes in the Bill, and we also heard evidence last week from a number of small businesses, or those who work with them, that they do not want a two-tier system. They said there are benefits in these provisions that will lead to not only better quality rights for those currently on zero-hours contracts but happier businesses with a more productive workforce.

• 29 Nov 2024 · Terminally Ill Adults (End of Life) Bill · Hansard source

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  Today’s decision has been one of the hardest that I have had to make. In my career in disability law and policy, I chose not to focus on debates about whether disabled people should be born or whether we should die. Instead, I focused on enabling disabled people to live better, more fulfilling lives. Today, I find myself voting in a way that I thought I never would. I will vote in favour of moving the Bill to the next stage of the legislative process. That has been a difficult journey for me. I have arrived here by looking at the evidence, reflecting on my own lived experience and listening to the many, many constituents who have written to me in support of the Bill, sharing their compelling and tragic stories of death—death which did not come with dignity or respect. In reflecting on my own life, one moment from my childhood stood out. When I was six years old, I had major surgery on my hips. I was in body plaster from my chest to my ankles, and in so much pain and requiring so much morphine that my skin began to itch. I remember vividly laying in a hospital bed in Sheffield Children’s hospital and saying to my parents, “I want to die. Please let me die.” I needed to escape from the body I was inhabiting. That moment has come back to me all these years later. That moment made it clear to me that if the Bill was about intolerable suffering, I would not vote for it. I have subsequently had a good life, a fulfilling life, a life where I have worked towards ensuring disabled people are valued by our society. But that moment also gave me a glimpse of how I would want to live my death: just as I have lived my life, empowered by choices available to me; living that death with dignity and respect, and having the comfort of knowing that I might have control over that very difficult time. For so often, control is taken away from disabled people in all sorts of circumstances. In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards. The choice of assisted dying as one option for adults when facing six months’ terminal illness must be set alongside the choice of receiving the best possible palliative and end of life care, or it is no choice at all. Having analysed the Bill closely, therefore, there are changes I would want to see in Committee to strengthen those options and ensure the way that choice is presented by medical practitioners is always in the round. People deserve dignity in death, and for those who do not choose to end their lives in this way, they and their loved ones should feel reassured and safe in the knowledge they will receive the very best of care. I would also want to ensure that the final stages of the Bill properly define “dishonesty”, “coercion” and “pressure”. I think it is necessary to embed mandatory language in the Bill around the need for a code of practice on palliative care, as well as improving the regulations on training for medical practitioners. I trust my hon. Friend the Member for Spen Valley (Kim Leadbeater) to champion those amendments and to continue to diligently listen to Members, as she has throughout this process. However people vote today in this House—a decision of conscience—it is incumbent on all of us to commit to improve palliative, end of life and adult social care. It must be the start of the work that we do in this place to ensure the very highest standards in these areas. That will be a very great legacy indeed: giving people the dignity they need in the moment of death. For many of us across the Chamber, considering these issues has been extremely hard and upsetting. We have had to go to the very depths of our selves to understand what choice we will make today. While we may enter different voting Lobbies, we leave this Chamber shoulder to shoulder. I know we will all work in our own ways to make systemic change to improve the lives of our constituents, and people up and down this country.