Children with Serious Neurological Conditions

Daniel Francis Excerpts

Thursday 20th November 2025 Commons Chamber

[James Asser (West Ham and Beckton) (Lab)]

I am pleased to have secured this Adjournment debate on the support available to children—and, crucially, their families —living with serious neurological conditions. I applied for this debate after hearing the moving testimony of my constituent, Shelina, a mother who, like so many parents in similar circumstances, never expected to find herself navigating the complex and overwhelming world that confronted her when her daughter Tafida fell seriously ill.

Following Tafida’s diagnosis, Shelina not only became an advocate for her own child, but went on to support others facing similar paths. She founded the Tafida Raqeeb Foundation, a charity dedicated to helping families understand treatment options, access specialist knowledge and feel supported at a time when many can feel at their most isolated. The foundation now supports families both here and abroad, and the insights it has gathered are invaluable in helping to shape thoughtful and compassionate reform.

Shelina’s story, sadly, is not unique. Each year, thousands of children in the UK are diagnosed with life-limiting neurological conditions.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I thank my hon. Friend for securing the debate. Today, on Carers Rights Day, will my hon. Friend join me, as the parent of a child with a neurological condition, in paying tribute to all carers and charities for their work in supporting families like the family in his constituency?

[James Asser]

I am very happy to join my hon. Friend in that. I certainly know, and I think the House knows, his expertise in this area and the knowledge he brings to the House. That is something I will touch on further in a little while.

Some conditions present at birth and others emerge unexpectedly in early childhood. What unites the families is not only the complexity of the diagnosis, but the emotional, financial and practical challenges that follow. When faced with these circumstances, support is not an optional extra; it is the difference between families coping or reaching breaking point. Today, I want to focus on areas where the Government can continue to make a tangible difference, while also reflecting on several principles identified by families and organisations working closely in this space.

The first is access to high-quality information and specialist expertise. In the early weeks and months after a child’s diagnosis, many parents simply do not know where to turn. Conditions may be so rare that even highly experienced clinicians have encountered only a few cases. Understandably, families seek second opinions, sometimes internationally, in their search for clarity and reassurance. That is why proposals for more consistent access to second opinions, including clarity on how families can request them and where they may come from, are so important. Ensuring that such opinions are available promptly and from appropriately qualified clinicians would help prevent misunderstandings and reduce distress at an already emotional time. Similarly, early involvement of mediation and clinical ethics support can help families and clinicians work through complex decisions collaboratively, rather than feeling pushed towards formal disputes. When available at the right moment, these mechanisms can preserve trust and keep conversations centred on the child’s best interests.

Families have also highlighted the importance of having clear and safe hospital transfer options. Where another suitably qualified hospital, whether in the UK or abroad, is willing to accept a child, and where the clinical risks are manageable, families understandably value the reassurance that such a transfer could be facilitated. Greater clarity on how transfer decisions are made would help families feel respected as partners in their child’s care. I would be grateful if the Minister outlined, when she replies, what further steps might be taken to strengthen these early support mechanisms and to ensure that families across the country have timely, consistent access to the specialist guidance they need.

The second area where the Government can make a difference is in emotional and practical support for families. Caring for a child with a serious neurological condition frequently requires round-the-clock care. Parents become experts in medical equipment, emergency responses, symptom patterns and complex medication schedules. This can take an enormous emotional toll. Consistent access to counselling, respite breaks, community nursing and psychological support can make an extraordinary difference. However, we know that this provision can vary. Some families receive exemplary support, while others find themselves waiting months or navigating multiple agencies before help arrives. Strengthening those forms of support so that they are reliable, accessible and sensitive to the pressures that families face would greatly reduce the emotional and financial burden that parents often shoulder.

The third area is ensuring that public services are co-ordinated, compassionate and connected. Many parents describe the system as fragmented, not through lack of dedication from professionals but because structures do not always align. Families may find themselves repeating their child’s history multiple times, facing delays in equipment provision, or juggling unco-ordinated appointments. For children with complex neurological needs, health, education and social care are deeply interconnected. A more joined-up approach can relieve pressure and help ensure children receive the right support at the right moment.

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[The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)]

I congratulate my hon. Friend the Member for West Ham and Beckton (James Asser) on securing this important debate and acknowledge the journey of his constituent Shelina Begum and the work she has done on behalf of her daughter, Tafida Raqeeb, with the establishment of the Tafida Raqeeb Foundation and all the work it does.

I thank my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for his contribution. His tireless work raising issues around supporting and caring for children with neurological issues is well known in this House. My hon. Friend the Member for Leeds South West and Morley (Mark Sewards) raised the issue of access to EHCPs—which are provided through local authorities—which continues to need work, and my hon. Friend the Member for Newcastle-under-Lyme (Adam Jogee) highlighted the need for joined-up care and services.

I am grateful for the opportunity to speak on a subject that touches on the lives of thousands of families across the country. There are hundreds of serious neuro- logical conditions that affect children, ranging from epilepsy and cerebral palsy to rare, genetic and degenerative disorders and acquired brain injury. I will speak on the common themes that unite people’s experiences: the need for timely diagnosis, integrated care and comprehensive support for every child and family, regardless of the specific condition they face.

Living with a serious neurological condition is a life-altering reality for children and their families. Whether congenital, acquired or progressive, these conditions often bring profound physical limitations, developmental delays and complex care needs. Families face relentless hospital visits, financial strain and the emotional toll of uncertainty, all while navigating fragmented health, education and social care systems.

The Government recognise these challenges and are committed to improving access to care, reducing inequalities and providing holistic support through health, education and social care systems. Our 10-year health plan will transform care for children with serious neurological conditions by delivering integrated, community-based services that put families at the centre and by prioritising early identification and intervention, ensuring that children receive timely diagnoses and treatment to prevent complications. Through neighbourhood health centres, multidisciplinary teams—including paediatric neurologists, therapists, mental health professionals and social workers—will provide wraparound support that meets medical, emotional and practical needs. Digital tools will empower parents to manage appointments and access records as easily as they bank online. This is about creating a system that works for families, not against them.

Through NHS England’s neurology transformation programme, we are creating pathways that wrap around families. The national bundle of care for children and young people with epilepsy sets clear standards for paediatric epilepsy care. For cerebral palsy, new commissioning frameworks ensure early intervention and co-ordinated services. Specialised paediatric neurosciences services provide access to life-changing procedures, such as epilepsy surgery and selective dorsal rhizotomy—that is a difficult word to say, Madam Deputy Speaker.

The Government are committed to improving lives for those affected by rare diseases, which includes some serious neurological conditions, under the UK rare diseases framework. This includes better co-ordination of care and improving access to specialist care, treatment and drugs. We also hear that children and families impacted by these conditions can struggle to access mental health support, which is just not right. To address that, the NHS genomics education programme has published new resources on rare diseases for healthcare professionals to help them with sensitive conversations. The 10-year health plan also sets out ambitious goals to transform mental health services across the country so that everyone living with a rare disease, along with their loved ones, can get the support they truly deserve.

We know that timely access to care is critical, yet many families face delays of months. That is unacceptable. That is why we have committed to meeting the NHS constitutional standard of patients seen within 18 weeks by March 2029. For the elective reform plan and the neurology transformation programme, we are expanding diagnostic capacity, rolling out virtual consultations and opening more community diagnostic centres seven days a week. Those steps will cut waiting lists and ensure that children and families get the care they need when they need it.

We know that neurological conditions often come with emotional and behavioural challenges. That is why mental health support is being embedded into paediatric neurology pathways. Initiatives such as the national bundle of care for children and young people with epilepsy include psychological support as a core component. We are also expanding mental health support teams in schools and launching young futures hubs to provide integrated local support. This holistic approach recognises that physical and mental health are inseparable.

For many families, the move from paediatric to adult services is a key time of uncertainty. We are addressing that through structured transition planning, as set out in the National Institute for Health and Care Excellence guidance and NHS England frameworks.

[Daniel Francis]

Transition is a key issue for families in this area. In the last Parliament, the all-party parliamentary group on cerebral palsy issued recommendations about health pathways for adults, because for a lot of these conditions, including cerebral palsy, there are not the same health frameworks for adults as there are for children. Will the Minister take that point away and look at how we can replicate some of the pathways that are there for children in the adult sector?

[Ashley Dalton]

I am more than happy to do that. All too often, we have seen that the transition is a really difficult time, and as he points out, where services are perhaps not as joined up and cohesive for adults as they are for children, that is hugely jarring—a huge problem for families to navigate. We are committed to making sure that transition plans start early, involve families and ensure that continuity of care. Our goal is to make the process smooth and supportive, not stressful and fragmented.

Health is only one part of the picture. Children with serious neurological conditions often have special educational needs and disabilities, and their success depends on a joined-up approach across sectors. That is why the SEND reforms that the Government are working on are so important. We are moving towards earlier intervention, stronger inclusion in mainstream education, and better collaboration between health, education and social care. These changes will ensure that support is needs-led rather than diagnosis-driven, with clear accountability across integrated care boards and schools. By embedding mental health provision, improving workforce expertise and planning smooth transitions into adulthood care, we aim to deliver consistent, high-quality support that helps children to thrive and restores confidence in the system.

Caring for a child with a serious neurological condition can place enormous financial strain on families. The welfare system is designed to provide a crucial lifeline, ensuring that no family is crushed by the additional, often substantial, costs associated with their child’s condition. The Government provide support through a range of benefits, including disability living allowance, carer’s allowance, personal health budgets and local authority support, including respite care and equipment provision. Financial support is not just about money; it is about giving families the stability and security they need to focus on what matters most—their child’s wellbeing.

Our commitment to children with serious neurological conditions reflects the core values of our society: compassion, fairness and the belief that every child deserves the chance to reach their full potential. By improving healthcare access and providing comprehensive support systems, we are building a more inclusive and resilient future for all. We will ensure that no child or family feels abandoned, and that compassion and co-ordination define the care that they receive.

Oral Answers to Questions

Daniel Francis Excerpts

Tuesday 22nd July 2025 Commons Chamber

[Wes Streeting]

When this Labour Government came to office, we promised 2 million more appointments, but we have actually delivered 4.5 million. We have cut NHS waiting lists month after month, and they are now at their lowest level in two years. Of course there is more to do. I regret that we had to delay Watford general hospital; the previous Government left a plan that was not credible and had no available funding. We are cleaning up their mess, and the hon. Member has a cheek to complain about it.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

The report, “Barriers for adults with Cerebral Palsy on achieving full life participation”, published by the former all-party parliamentary group on cerebral palsy, highlighted the cliff-edge in support for those with cerebral palsy when they transition at the age of 18 and the need to end the separation of neuro and musculoskeletal knowledge within the NHS, given that cerebral palsy is a neuromusculoskeletal condition, and that those living with it need easy and ready access to both areas. I would therefore be grateful if I could understand—

[Mr Speaker]

Order. Let me help the hon. Gentleman. If you have a main question and I call you in topicals, you really need to shorten your question in order to let other Members in.

Oral Answers to Questions

Daniel Francis Excerpts

Tuesday 17th June 2025 Commons Chamber

[Wes Streeting]

I should just say for the record that it is thanks to my friends at the Treasury that we are able to do so much to invest in our health service. It is important to put that on record ahead of the Budget. The hon. Lady raises a really serious issue, and we are looking carefully at what we can do to ensure that we get great people into our health service and that they can look forward to a great career. We are not in the right place as a country now; we need to be in a better place. The 10-year plan will set out our ambitions on workforce and we will publish a new workforce plan later this year.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

T5. It is 16 months since the publication of the Hughes report, but those patients harmed by sodium valproate continue to await the outcome on the redress that the Government will provide. Will the Secretary of State please provide an update on when they can expect an announcement on the redress that will be made available to them?

[The Minister for Secondary Care (Karin Smyth)]

I thank my hon. Friend for that important question. The Government are carefully considering the work of the patient safety commissioner and her report, which sets out the options for redress. This is a complex issue involving input from different Government Departments. We will provide a further update on the commissioner’s report soon.

Hughes Report: First Anniversary

Daniel Francis Excerpts

Thursday 27th March 2025 Westminster Hall

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Ms Furniss. I thank my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson) for securing this important debate.

I pay tribute to my constituents Paula and Gillian, who have experienced the impact of pelvic mesh. I raised Paula’s experience in a debate on 5 December, but not much has changed for her. She is still living with the devastation that pelvic mesh has caused to her life and wellbeing. As we have heard, Paula and Gillian are not alone in their experience. According to the Patient Safety Commissioner, the lower-end estimate suggests that 10,000 women have been harmed.

I pay tribute to all those who have campaigned for many years on the issue of sodium valproate. My good friend Teresa Pearce, the former MP for Erith and Thamesmead, worked very closely with many of the families over many years. She knows that the issue is close to my heart.

The Epilepsy Research Institute welcomed the Hughes report’s recognition of the vital role that research plays in understanding and mitigating the risks of anti-seizure medication. It continues to raise its key asks on how we can move forward with the report’s recommendations. The institute’s view is that Ministers need to provide a clear timeline for implementing the redress schemes and research funding that are recommended in the Hughes report. There is a need for dedicated, ringfenced funding for epilepsy research, particularly into the effects of anti-seizure medications taken during pregnancy.

My wife and daughter are both on sodium valproate. I know that sodium valproate did not affect my daughter, even though she has cerebral palsy from a brain injury at birth. However, I saw what happened to my wife: being taken off sodium valproate turned her life upside down. She went from being 12 years seizure-free to having to surrender her driving licence and not being able to work for some periods. I saw what it does to women in that situation, even though she had the correct advice. She eventually had to return to sodium valproate because of the number of seizures she was having and the impact it had on her life. I cannot imagine for a moment what the families present have gone through, but I know the impact that sodium valproate can have on women’s lives.

The Epilepsy Research Institute’s asks include:

“Ensuring that regulatory bodies act swiftly on safety concerns and that pregnant women with epilepsy have access to the best possible information and care. Working alongside experts and patient groups to ensure policies reflect the needs of those affected.”

I ask the Minister to address those recommendations.

We need to consider the people impacted by mesh and sodium valproate, as well as the wider impact. Sodium valproate continues to be prescribed, and we need a continuing review of how that affects women through their lives.

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

Daniel Francis Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

There is a danger, though. As we have heard from Australian and American practitioners, the reviews undertaken in other jurisdictions are actually used to unpick safeguards, which become reframed as barriers to access. That is indeed implicit in a Bill that creates a new human right. The safeguards that are created discriminate against certain groups of people: most obviously, those who have a diagnosis of more than six months, those who have to go through the hoops—the number of assessments—set by the Bill, or those to whom the doctor was not able to make the suggestion directly, although we do cover that in the Bill. So the safeguards in the Bill, weak as they are in my view, nevertheless might be challenged in the course of the review. If that is what happens, that is what happens, but that is all the more reason why it is important that we insist on regular and short-term reviews, and why Parliament should have a meaningful debate with Ministers answering for the operation of the legislation.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. This has been a long process, and we are nearly at the end of it now. Members will recall that at the start of the process, I was very insistent that Mencap should give oral evidence. When it did so, Dan Scorer said:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280, Q367.]

[Jake Richards (Rother Valley) (Lab)]

My hon. Friend is, as ever, making really important points. Is he reassured by the fact that the commissioner will be reporting annually, as per the previous clause, and that the panel will give reasons, which will likely be public?

[Daniel Francis]

The annual reporting does give us some reassurance, but when we accepted some of Mencap’s recommendations last week, I said that I would welcome it if the entirety of its recommendations were accepted—and it wanted an overall review at an early stage in the process.

Amendment 493 to 495, in my name, address those concerns. A consistent concern of mine is how we address issues that come to light from specific communities, particularly those with learning difficulties, and amend the legislation at a reasonable stage in the process.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger. I will be brief.

I am in favour of retaining the Bill as it stands. The key thing is the interplay between this clause and clause 42, on commencement. I would have been minded to support changes to the reporting period had the Bill been commencing within two years, as clause 42 as drafted sets out, but my hon. Friend the Member for Spen Valley has tabled an amendment that will change the backstop of the commencement period to four years. The timescales set out in this clause are from the day on which the Bill is passed. It makes no sense to carry out a formal review of the operation of the legislation before the services have come into being. We will have a four-year timetable, potentially, for the backstop of the commencement. Throughout that time, the annual reporting requirement of the commissioner, who will undoubtedly have been appointed in advance, will kick in.

I also draw the Committee’s attention to new clause 35, tabled by my hon. Friend the Member for Penistone and Stocksbridge, which speaks to some of the concerns raised by my hon. Friend the Member for Bexleyheath and Crayford. I strongly support the new clause, and the establishment of a disability advisory board to report annually on the effect on disabled people of not just the Act but the implementation. Picking up any concerns or views about its effect on people with disabilities would happen in a timely manner under new clause 35.

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Division 74

Question accordingly negatived.

Ayes: 9

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Labour: 6
Conservative: 2
Liberal Democrat: 1

Noes: 14

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Labour: 9
Liberal Democrat: 2
Conservative: 2
Plaid Cymru: 1

[Daniel Francis]

I beg to move amendment 491, in clause 35, page 22, line 2, after “health” insert “and care”.

This amendment, together with Amendment 492, would broaden the scope of the assessment criteria for the Review of this Act, by referring to “health and care services to persons with palliative and end of life care needs” to provide a more holistic consideration of palliative and end of life care needs, reflecting current clinical best practice.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 492, in clause 35, page 22, line 2, after “palliative” insert “and end of life”.

See Amendment 491.

Amendment 397, in clause 35, page 22, line 5, at end insert—

“(ba) an assessment of the impact of this Act on persons with learning disabilities, including any concerns about the operation of this Act in relation to such persons;”.

[Daniel Francis]

I will be brief. Amendments 491, 492 and new clause 28, which will be discussed when we come to the next group, have all been suggested by Marie Curie, the UK’s leading end-of-life charity. Amendments 491 and 492 are minor amendments that would broaden the scope of the required assessment of the availability, quality and distribution of palliative care services to be undertaken as part of the five-year review of the Act, by referring to

“health and care services to persons with palliative and end of life care needs”.

That provides a more holistic consideration of end-of-life care than the current drafting of

“health services to persons with palliative care needs”

and would reflect the current clinical best practice of palliative care multidisciplinary teams, incorporating both health and social care professionals. It is in line with current clinical best practice and with the written evidence that Marie Curie has supplied to us. In addition, amendment 397 is in line with many other amendments I have tabled during this process and seeks

“an assessment of the impact of this Act on persons with learning disabilities, including any concerns about the operation of this Act in relation to such persons”.

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[Kim Leadbeater]

I will speak to my new clause 40 and my amendment 546. The purpose of new clause 40 is to establish a requirement for regular reports on the implementation of the Act until all its provisions are fully implemented. This will ensure continuous oversight and transparency regarding the progress of the Act’s implementation.

The new clause will mandate the Secretary of State to prepare, publish and lay before Parliament a report on the implementation and progress of the Act as soon as reasonably practicable after each reporting period. The reports must include the progress made on implementing the Act during the reporting period, and the Secretary of State’s plans for implementing the Act in future periods, including an expected timetable for further implementation. The first report must be issued one year after the Act is passed, and subsequent reports are due every six months. The sixth and final report marks the conclusion of the reporting period.

The new clause is linked to amendment 546, which will ensure that new clause 40 will be brought into force immediately upon the passing of the Bill, making the reporting requirements active right from the start. This provision is crucial for maintaining accountability and for ensuring that Parliament is regularly updated on the progress of the Act’s implementation and that any necessary adjustments or future plans are communicated effectively. It provides a structured timeline to track the implementation of the Act until all provisions are fully operational.

[Daniel Francis]

I wish to speak to my new clause 28, which was suggested by Marie Curie, the UK’s leading end-of-life charity. The new clause is more substantive than my two amendments in the previous group. It would require an additional assessment within 12 months of the Bill being passed, with the Secretary of State required to undertake an assessment of

“the extent to which the Act is on course to meet its aim of allowing adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own lives”.

Crucially, the assessment would incorporate an assessment of the current state of health and care services to persons with palliative and end-of-life care needs, and the implications of the Act for those services, including for the quality and distribution of palliative and end-of-life care services. The new clause seeks to mirror the requirement in clause 35 for an assessment after five years of the Bill passing, only within 12 months of the Bill receiving Royal Assent, in order to provide a benchmark against which the later assessment can be measured.

There has been much discussion about the relationship between the Bill and palliative and end-of-life care services. Above all, the intention behind this new clause is to ensure that, outside the proceedings of the Committee and the progress of the Bill, that relationship is properly and thoughtfully considered by Government. We have heard a range of expert evidence throughout the Committee that, despite the very high quality of palliative and end-of-life care in this country and the phenomenal efforts of the clinicians and organisations delivering it, access to that vital care is all too often inequitable and subject to a postcode lottery.

As Marie Curie stated in its written evidence, if the fundamental aim of the Bill is to offer terminally ill people choice at the end of life,

“genuine choice…cannot exist unless dying people are able to choose to receive high quality palliative and end of life care”.

The sad reality is that in too many cases today people are not able to make that choice. There will most likely be consensus among us that action is needed to fix end-of-life care to ensure that all dying people can have choice and dignity, even if we disagree on whether that is most appropriately achieved on the face of the Bill or through other mechanisms.

There has also been a great deal of debate and discussion about what the impact of introducing assisted dying might be on palliative care services and reference to what might have happened in other jurisdictions. We should not leave this to chance and fool ourselves that improved access to palliative and end-of-life care would be an inevitability as a result of the debate or level of public interest in the Bill. By requiring an immediate assessment of the state of health and care services available to persons with palliative and end-of-life care needs through new clause 28, we can create a framework for accountability within this legislation and a firmer basis on which future policy and spending decisions on palliative care can be made.

It may be useful to recall that we have not had a national strategy for palliative and end-of-life care since 2008. While I appreciate that there are major policy milestones approaching, such as the 10-year health plan, that could help to address that gap, my hope is that an assessment of the quality and availability of palliative and end-of-life care services undertaken as part of the Bill can sit helpfully alongside other plans and strategies.

When introducing the Bill on Second Reading, my hon. Friend the Member for Spen Valley chose to highlight that she had

“included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.”—[Official Report, 29 November 2024; Vol. 757, c. 1013.]

At this point, the Bill requires such an assessment only after five years. I hope that she and other hon. Members will agree that it would be beneficial to support this new clause so that such an assessment may be undertaken within 12 months, in support of the ambition of seeing improvements in palliative and end-of-life care.

[The Chair]

For the avoidance of confusion, these new clauses will not be voted upon now. You will have the opportunity to move them formally later, when we reach them at the appropriate time in the course of consideration.

[Dr Simon Opher (Stroud) (Lab)]

I find the delay of four years that new clause 40 would introduce excessive in terms of the time taken and needed to deliver the requirements to implement the Bill in legal terms. I urge the Committee to reduce that at least to three years. That would mean four six-month checks, rather than six. The reason is that we have created a thorough Bill that is ready to implement. I understand that there are some pressures on the Department of Health and Social Care, so I accept a year’s delay. My worry is that a four-year delay might well take us past the next election and that the Bill will become an issue in the election.

[Daniel Francis]

That new clause was tabled within the last week. Has my hon. Friend sought advice from the Clerks? The only way that we could amend this now is through a manuscript amendment, and I presume that now, at the eleventh hour, that would not be allowable. I just want to clarify the position.

[Dr Opher]

I am afraid I do not understand how we could change this. I just wanted to put on record that I feel that a four-year delay is excessive. I have nothing further to add to that, but I would be interested in the legal opinion on whether we can change it.

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[Stephen Kinnock]

Yes. I am very happy to take that up with officials and I will come back to the right hon. Gentleman in short order.

New clause 20 would introduce a requirement on the Secretary of State to lay an annual report in both Houses of Parliament on the impact of the Bill. The report would include the effect of an assisted dying service on access to healthcare, palliative care and assisted dying, and an analysis in relation to people’s socioeconomic status and protected characteristics. That report would sit alongside the existing requirement in clause 35 for a report five years after the Bill is passed. The new clause would require that the first annual report be laid before each House on its first sitting day after one calendar year from the passing of the Bill. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.

Protected characteristics are defined in section 4 of the Equality Act 2010; however, socioeconomic status is undefined in the new clause, and is not defined elsewhere in the Bill. It is therefore not clear what the assessment of those factors is intended to involve, and it may be difficult in practice for the Secretary of State to determine whether they have fulfilled this duty.

New clause 28 would introduce a legal requirement on the Secretary of State to undertake an assessment of the Bill within 12 months of it being passed, and to publish and lay a report of that assessment in both Houses of Parliament. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.

Under the new clause, the assessment must cover the extent to which the Bill is on course to meet its aims; the state of health and care services for persons receiving palliative and end-of-life care; the implications of the Bill on those services; any emerging concerns relating to the operation of the Bill; and any steps the Secretary of State proposes to take in response to those concerns. That requirement is in addition to clause 35, which requires a review by the Secretary of State at the end of the initial five-year period after the Bill is passed. That new requirement is wider in scope, and would be required after one year.

Palliative and end-of-life care services are broad, holistic services, provided by a range of professionals and providers—generalist and specialist—across the NHS, social care and voluntary sector organisations. Therefore, measuring the provision is difficult, as relevant consultations and tasks are not always coded as palliative or end-of-life care. Commissioning and contracting processes do not consistently support data collection, with block contracts and grants commonplace. It is also practically difficult to identify the Bill as the catalyst of the implications on those services over the specific period, as they are affected by multiple factors.

Question put and agreed to.

Clause 35, as amended, accordingly ordered to stand part of the Bill.

Clause 36

Disqualification from being witness or proxy

[Daniel Francis]

I beg to move amendment 454, in clause 36, page 22, line 26, at end insert—

“(e) any person who would not have capacity to request assistance to end their own life under this Act.”

[The Chair]

With this it will be convenient to discuss clause stand part.

[Daniel Francis]

Amendment 454 stands in my name, in relation to the clause on disqualification from being witness or proxy. Clause 36(2) outlines the reasons why an individual cannot be a witness or proxy: if they are a relative of the person; if it is believed they are a beneficiary of the will; if they may otherwise benefit financially; if they are a health professional who has provided treatment or care for the person; or if they have not yet attained the age of 18.

Clearly—particularly on clause 3—we have had long debates about mental capacity, and it does not state in clause 36 as is currently stands that the person who is over 18 has to have mental capacity. Therefore, as the Bill stands, someone could bring their grandmother with Alzheimer’s or dementia along and get her to sign their paperwork. My amendment simply seeks to ensure that the person who is the proxy has mental capacity. I commend the amendment to the Committee.

[Stephen Kinnock]

As drafted, clause 36 sets out individuals who are disqualified from acting as a witness or proxy. Amendment 454 would add to that list and exclude anyone from acting as a witness or proxy who would not themselves have capacity to request to end to their own life under the Bill. This would require there to be an assessment of the capacity of potential witnesses and proxies. There is no corresponding obligation placed on medical practitioners in the Bill to assess the capacity of potential witnesses and proxies, so it is not clear how a person would request, and be provided with, the required capacity assessment.

[Kim Leadbeater]

It is right that there are some exclusions for witnesses and proxies, as set out in the Bill, but although I have no doubt that amendment 454 comes from a good place, it seems both excessive and impractical to conduct a capacity assessment on witnesses and proxies. They are not the patient who is seeking assistance under the Bill, and the role they have is functional and will be overseen by the co-ordinating doctor. The panel can also ask to hear from them if they wish. As such, I cannot support the amendment.

[Daniel Francis]

I wish to press the amendment to a vote.

Question put, That the amendment be made.

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

Daniel Francis Excerpts

Tuesday 18th March 2025 Public Bill Committees

[Danny Kruger]

I was not suggesting that pentobarbital has a paralytic effect. Often in assisted dying, a paralytic is administered first as part of the cocktail of drugs. Subsequently, we discover that while the patient may have appeared entirely calm, sleeping peacefully, significant trauma may have been occurring beneath the surface.

I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.

I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.

To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.

I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Sir Roger. I will speak to amendments 429 and 430 in my name. During oral evidence, we discussed the issues in subsections (9) and (10) of clause 18 and whether there is a contradiction. Subsection (9) states that the co-ordinating doctor

“must remain with the person”

and subsection (10) says:

“For the purposes of subsection (9), the coordinating doctor need not be in the same room as the person”.

We also discussed how that works in other jurisdictions. My amendment 429 would deal with that conflict. If the Bill were to become law, that conflict could be queried.

We also need to consider the possibility of complications. Clearly, if there are complications and the doctor is not in the same room, they would not necessarily be aware of those complications. I accept that, in some normal circumstances, doctors and medical professionals are not present in the room at the time of death; at other times, they are present. The amendment would mean that if something were to go wrong and someone was having a painful reaction to the drugs, the doctor would be there to see and help.

I do not understand what the Bill means when it says the doctor does not have to be in the same room. How far away would the doctor have to be? One subsection says the doctor has to remain with the person, and the following subsection says they do not have to be in the same room. If the Bill were to pass, we would be asking doctors to do something that is unprecedented. If the person were to suffer complications such as seizures or vomiting, or if they were exhibiting signs of distress, it appears that the doctor should be present. Members may think this could encroach on a patient’s privacy, but I think there is a discrepancy between the two subsections.

On amendment 430, I am conscious that my hon. Friend the Member for Ipswich has tabled a similar amendment. The intention of my amendment is to ensure there are regulations in responding to any unexpected complications that arise in relation to the administration of the approved substance, including when the procedure fails. I am conscious that if a doctor intervenes, they could end up in breach of the Suicide Act 1961. I therefore left the wording in that vein, as I understand that we will receive more information in due course.

Again, we received oral evidence from a number of people that what a doctor is meant to do in the event of unexpected complications is a matter of concern from both a legal and a medical perspective. We know from the evidence received from other jurisdictions that—I accept in a small minority of cases—there can be complications or the death can take much longer than expected. We also received evidence that, on rare occasions, death can take days.

Amendment 430 would show we have thought about those circumstances and provided for them by giving doctors a code of practice to refer to, rather than being left in the dark if a difficult situation arises at the time of death. We must not find ourselves in a circumstance in which doctors and patients are unprepared. It is important for us to think through, provide for and safeguard against all possible scenarios, however rare they might be. Of course, we would not want them to happen, but in some circumstances they might, and we would not want there to be a legal hole. Accepting the amendment would mean the Secretary of State has the opportunity to provide a code of practice for such circumstances. I hope hon. Members will be able to support the amendments in my name.

[Sarah Olney (Richmond Park) (LD)]

It is a pleasure to serve under your chairmanship, Sir Roger. I support amendment 429, tabled by the hon. Member for Bexleyheath and Crayford.

I do not understand how subsection (9) can require the doctor to remain with the person until they have self-administered and died, or until they have decided not to self-administer, while subsection (10) states that the doctor need not be in the same room. The Bill becomes even less coherent when we consider subsection (11), which requires the doctor to remove the substance immediately if the person decides not to self-administer—how can the doctor do so if they are not in the same room? Amendment 429 would make the scheme more coherent and I support it for that reason.

I accept that there are downsides to having the doctor present, especially before the administration, as people have a normal desire for privacy, but that needs to be balanced against the risk of someone else taking the substance or something going wrong in the process of self-administration. In Australia, there is no requirement for the doctor to be present, which has led to some cases of abuse. I understand why the Bill’s promoter has chosen not to go down the Australian route, but the position arrived at in subsection (10) lacks coherence and is unclear.

What does it mean to remain with the person without being in the same room? Does it mean being in the corridor just outside the room, but with the door open? What if it is closed? What if, as a result of the door being closed, the doctor is no longer within earshot? I am not the only one who is confused, as so are the doctors who will have to apply the legislation. For example, Dr Janet Menage, a retired GP, told us in written evidence—TIAB 182—that the provisions

“are mutually exclusive: doctor ‘must remain with the patient’ but ‘not in the same room’…This makes no sense. In any case, if the attending doctor is not in the same room there could potentially be an intervention by another person to the patient’s detriment. Or the patient may wish to cancel the suicide at the last moment and be unsupported in voicing that decision.”

With or without subsection (10), I would like to know whether the Minister has made an assessment of the workforce impact of such a requirement for the doctor to be present. As Dr Rebecca Jones told us:

“As the death may take many hours, I’m uncertain of the practicalities of this”.

--- Later in debate ---

[Dr Opher]

I will make a little progress and will then take my hon. Friend’s intervention.

On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.

On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.

[Daniel Francis]

I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor

“need not be in the same room”.

I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?

[Dr Opher]

I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.

Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.

I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.

I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.

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

Daniel Francis Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Kim Leadbeater]

I repeat what I said earlier about what will happen to the patient if they choose to cancel: their care will continue. From a medical practitioner perspective, it is inconceivable that those patients would be abandoned, as the hon. Member for East Wiltshire is suggesting. That would not happen.

I understand that cancellation of the second declaration does not need to be included in clause 14(4) because of when in the process it would happen. The first declaration comes much earlier, so clauses 7 to 9 would be applicable; the second declaration comes further down the process, so does not need to be included. However, I am happy to look at that in further detail and come back to the hon. Member on that, if necessary.

Amendment 375 agreed to.

Amendment made: 376, in clause 14, page 10, line 12, after “doctor” insert “and the Commissioner”.—(Kim Leadbeater.)

This amendment requires a practitioner other than the coordinating doctor to notify the Commissioner (as well as the coordinating doctor) of a cancellation of a first or second declaration.

Clause 14, as amended, ordered to stand part of the Bill.

Clause 15

Signing by proxy

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I beg to move amendment 321, in clause 15, page 10, line 33, at end insert—

“(d) the reason why the person was unable to sign their name.”

[The Chair]

With this it will be convenient to discuss the following:

Amendment 431, in clause 15, page 11, line 1, leave out paragraphs (a) and (b) and insert

“the donee of Lasting Power of Attorney for Health and Welfare decisions, who has the ability to give or refuse consent to life-sustaining treatment, as registered with the Office of the Public Guardian.”

This amendment would restrict proxies to donees of Lasting Power of Attorney for Health and Welfare decisions, including to give or refuse consent to life-sustaining treatment.

Amendment 473, in clause 15, page 11, line 3, leave out from “person” to end of line and insert

“of a description specified in regulations made by the Secretary of State.”

This amendment provides that persons of a description specified in regulations (rather than persons “of good standing in the community”) may be proxies.

Amendment 253, in clause 15, page 11, line 3, at end insert—

“(6) For the purposes of this section “declaration” includes the cancellation of a declaration.”

This would allow a cancellation of the first or second declaration to be signed by a proxy.

Clause stand part.

[Daniel Francis]

It is a pleasure to serve under your chairship, Ms McVey. Amendment 321 will mean that the proxy’s declaration must also include the reason why the person was unable to sign their name. That would add a vital safeguard for the person and for the proxy.

In this Committee, we have consistently discussed the need to safeguard vulnerable people from being coerced into choosing assisted dying; for those who need a proxy, the risk of coercion might be higher. As the Bill currently stands, the person needs to tell only their proxy the reason why they are needed. I would like to make it clear why the amendment is important. The Bill does not currently specify that the patient’s declaration of the reason for needing a proxy has to be heard by anyone other than the proxy themselves.

I am conscious that, since my amendment was tabled, my hon. Friend the Member for Spen Valley has also tabled amendments about the relationship and who the proxy could be, but I do not believe that amendment 321 would be a burden or cause any unnecessary complication. As the Bill currently stands, when a proxy signs the declaration they already have to include their full name and address, the capacity in which they qualify, and a statement that they have signed in the capacity of a proxy.

As we have said before, it is vital to safeguard vulnerable people at every stage of the process; adding the reason why the proxy was required allows other people during the process, including if there were allegations later, to understand why that was required. If the first declaration is signed by a proxy, then the co-ordinating doctor—the independent doctor—would be able to examine that reason, so including the reason for someone being unable to sign their own declaration would improve transparency around the process. I hope that hon. Members will agree that we need to be able to monitor how those requests are made and the reasons that people are giving.

In written evidence, several experts raised the importance of collecting good data to ensure that the assisted dying process is properly monitored, and amendment 321 would assist that; I believe that it would protect both vulnerable patients and proxies. I absolutely appreciate and understand that people may have a very good reason for requiring a proxy—if they are very ill during the process, for example. The amendment would simply mean that, if there were to be concerns or allegations at a later stage, the reason why the proxy was required would be written down.

[Kim Leadbeater]

My hon. Friend is making a really sensible point and a fair argument, and I am very happy to support the amendment.

[Daniel Francis]

I welcome my hon. Friend’s acceptance of the amendment, and I think she sees the point behind it. It was meant not to be awkward—I do not think I have been at all awkward during this process—but simply to state that, if there were concerns later, the reason why the proxy was required should be there in a transparent way. I commend amendment 321 to the Committee.

[Danny Kruger]

I am grateful to the hon. Gentleman and I very much support his amendment; it is good to hear that the Bill’s promoter, the hon. Member for Spen Valley, will as well. The hon. Member for Bexleyheath and Crayford has made his points very powerfully, and it is good that we are in agreement.

I also support amendment 431, tabled by the hon. Member for York Central, which would restrict proxies to donees of lasting power of attorney. The point is that somebody who has been through the process of taking on power of attorney has been properly vetted and approved; they are required to demonstrate their fitness for the role and undertake a meaningful duty of care to the person for whom they are a proxy. That strikes me as an appropriate suggestion from the hon. Lady.

Amendment 411, tabled by the hon. Member for Broxtowe, suggests that the phrase

“a person who is of good standing in the community”

should be deleted. I think she is absolutely right to suggest that. I made the point on Second Reading that—

Rare Cancers Bill

Daniel Francis Excerpts

2nd reading
Friday 14th March 2025 Commons Chamber

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I pay tribute to my hon. Friend the Member for Edinburgh South West (Dr Arthur) for introducing the Bill and for his work in bringing about this necessary debate on rare cancers. I also pay tribute to all Members who have spoken today, but particularly to my hon. Friend the Member for Calder Valley (Josh Fenton-Glynn) for his heartbreaking tribute to his brother.

Like too many across this House and throughout the United Kingdom, I have been on the receiving end of the devastating news that a loved one has been diagnosed with cancer, but when that cancer is defined as rare, it is infinitely more terrifying, when confronted with the reality that there is a lack of funding and research dedicated to those cancers. I therefore welcome the three steps in the Bill to encourage further research into rare cancers. I welcome the fact that it will place a duty on the Secretary of State for Health and Social Care to facilitate or otherwise promote research into rare cancers. The Bill will ensure that appropriate arrangements are in place for patients to be easily contacted about research opportunities and clinical trials, and will also ensure that there is adequate oversight of research delivery for rare cancers.

I also pay tribute to my hon. Friend the Member for Mitcham and Morden (Dame Siobhain McDonagh) for her dedication in bringing glioblastoma and other types of brain cancer to the forefront of the political debate. I would like to mention the all-party parliamentary group on brain tumours and its work to raise awareness of the issues facing the brain tumour community. I have seen at first hand how devastating glioblastoma can be: my dear friends and constituents, Ann and Richard Lucas, lost their son Fionn in 2022. Fionn was diagnosed with glioblastoma aged 58 in June 2022, and his cancer left him with a very short time to live—he died two months later. The Lucas family has supported the work of the Brain Tumour Charity to help find new treatments, offer the highest level of support and drive urgent change, given the charity’s aims of saving and improving lives and carrying out research into brain tumours globally.

Glioblastomas are fast-growing brain tumours. They are the most common type of cancerous malignant brain tumour in adults, yet as has been said, there is still a lack of funding. Of the 54% of research that is specifically about rare cancers, only 16% is focused on brain and nervous system cancers. I therefore welcome this Bill, thank my hon. Friends the Members for Edinburgh South West and for Mitcham and Morden, and place on record my support for the aims of the Bill—to support research, and to support those impacted by rare cancers.

Terminally Ill Adults (End of Life) Bill (Twenty First sitting)

Daniel Francis Excerpts

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Dr Opher]

I thank my hon. Friend the Member for York Central for tabling the amendment. The crucial word that the hon. Member for East Wiltshire said in all that was “should”. It is really important that people are strongly encouraged to discuss this with their families. Clause 9(2)(f) states that

“in so far as the assessing doctor considers it appropriate, advise the person to consider discussing the request with their next of kin and other persons they are close to.”

I totally support all that the hon. Member said: the family should always be involved in every decision. However, in the way we practice medicine in this country, if a patient has capacity—if they are not under a section under the Mental Health Act, for example, and can show that they have capacity—they can make decisions about their own healthcare. That involves whether they tell their family.

I agree that not to tell the family is not the best thing and not something I would say that the patient should do, but that is in their remit. It is important because, if we change that, we get rid of all the basis and the foundation of medical care and consent in this country. I agree wholeheartedly with the hon. Member, and I am a strong supporter of the family—I also think that in almost every situation the family will be involved—but the patient does not have to tell the family. That must remain part of their decision.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I am torn by this amendment. I absolutely accept that it is the right, the autonomy, of an individual to make the decisions and to have confidentiality when making those decisions, but I will touch on a few things that I have said previously.

First, briefly, I hear what the hon. Member for East Wiltshire said about coercion. Secondly, however, there are two other aspects. Let me go back to something I have talked long and hard about, which is learning disability. One amendment has been accepted and I hope more are to come, but given what my hon. Friend the Member for Stroud said, in that scenario, someone might have to be helped by the doctor to make the decision, because of their level of capacity. When I have made the argument throughout our debates, that has never ever been doubted. The person who has been helped to make that decision may have decided, because they are a burden on their elderly parents, that they will not inform them. Again, that was the rationale of where I got to on Second Reading, frankly.

I see people with elderly parents, often now in their 70s or 80s, who have cared for that person throughout their life. As the Bill and the Mental Capacity Act are laid out, that person could go to the doctor to say, “I do not want my parents to know. I hear what you say, doctor, but under this provision of the Act”—clause 9 of the Bill—“I am not going to tell them.” Under the Mental Capacity Act, if the doctor had any queries about the capacity of that person to make those decisions, that doctor would have to assist them in making them. Let us be clear that that is what the Mental Capacity Act 2005 provides for, and that is what the code of practice says.

--- Later in debate ---

[Daniel Francis]

That is what I have wrestled with. That conversation will happen, and at the end of it, I accept that the autonomy is with the individual, who may well make a decision that they believe is for the best but with which their loved one does not necessarily agree. I think there are examples from overseas of that having happened.

[Kit Malthouse (North West Hampshire) (Con)]

I agree about the primacy of autonomy, but does the hon. Gentleman agree that, given the status quo and the many stories that we have heard about individuals who took their lives but kept it secret from their families, whether by going to Switzerland or by doing it in a horrible way in lonely circumstances, a regulated atmosphere would makes it more likely that people will talk to their family about what their death will be like and, as we have learned from overseas, make arrangements for their family to be around them, or at least to say goodbye, as they move into that process? At the moment, because this area is unregulated, way more people do it in secret than need to.

[Daniel Francis]

I am not entirely persuaded. I think there is currently a mixture of cases, and there will potentially be a mixture of cases in future. I hear what the right hon. Member says, but my primary concern is about the way things are. As I say, I am minded not to support the amendments on balance, but I am concerned that we could end up hearing stories about someone’s loved one of 50 years, or their child with a learning disability, having had an assisted death—and the first they knew about it was when it was too late.

[Lewis Atkinson (Sunderland Central) (Lab)]

It is a pleasure to serve under your chairship this afternoon, Ms McVey.

I feel that we are dancing on the head of a pin, but I oppose the amendment. Members across the debate have recognised that, as Dr Sarah Cox from the Association for Palliative Medicine said, it is always for the patient to decide. As my hon. Friend the Member for Rother Valley pointed out, both the original clause and the amendment rightly retain that decision with the patient. They also retain the discretion of the doctor, whether that is on an appropriate test or a best interests test.

I note that in its submission the Royal College of Physicians advocated the removal of the clause, saying that it goes beyond current practice. I support the clause on balance, because of the importance of these conversations and so on, but the physicians who are likely to carry out the conversations think that it is inappropriate to specify these conversations in primary legislation.

There are two phrases in the amendment that I think are entirely inappropriate. First, there is “concluded in good faith”. I am sure it is not the intent of the author and mover of the amendment, but it suggests that in other instances people might be acting other than in good faith. I commend the words from my hon. Friend the Member for Ipswich. We have to start from the point that doctors are operating in good faith. It is dangerous to set up a good faith test, as opposed to an “other faith” test, in primary legislation.

Secondly, I am certainly not trying to reopen the long debates we had about the Mental Capacity Act, but Members will recall that in those debates we were very clear that the “best interests” test should not and does not apply. Introducing language about best interests the first time in the Bill is very dangerous, and totally against the spirit and principle of what we have debated so far. For those reasons, I am against both amendments.

--- Later in debate ---

[Jake Richards]

As we heard in evidence from the chief medical officer, doctors deal with capacity issues on a day-to-day basis; I am not sure they necessarily need assistance from family members in that regard. However, I appreciate the point—I was going to come to that—

[Daniel Francis]

Will my hon. Friend give way on that point?

[Jake Richards]

I am going to make some progress, because I am not sure that point is crucial to the debate about this amendment; I am sure my hon. Friend will grab me afterwards. I did not mean to mischaracterise the evidence on that point.

I accept that there is a tension here. No man is an island, as the hon. Member for East Wiltshire notes, and of course this process may cause upset to others. Equally, the input of third parties to the assessment of all the issues of eligibility is worth while, but it has to be dealt with in a proportionate way. When we debate clause 12—hopefully shortly—perhaps we can discuss that, and I hope to speak to that point.

However, this amendment is trying to crack that delicate nut with a huge hammer. It fundamentally changes the relationship between doctor and patient, and puts the doctor in a position where they do not have the skills or expertise to make that best interest decision. The amendment therefore fails, and that is why I will vote against it.

--- Later in debate ---

Court approval

[Daniel Francis]

I beg to move amendment 105, in clause 12, page 8, line 15, leave out subsections (4) and (5) and insert—

“(4A) Rules of Court must secure that in relation to an application under subsection (1), the High Court must—

(a) prescribe a procedure which in relation to each application appoints a person (the Official Solicitor in cases in brought in England and Wales) to act as advocate to the Court,

(b) hear from and question, in person—

(i) the person who made the application for the declaration,

(ii) the coordinating doctor,

(iii) the independent doctor, and

(c) consider hearing from and questioning, in person—

(i) persons properly interested in the welfare of the person who made the application for the declaration and other persons they are close to, and

(ii) any other person who has provided treatment or care for the person being assessed in relation to that person’s terminal illness.”

This amendment would require court rules to be made that would ensure an adversarial court process, by appointing an advocate to the court. It would also require them to hear from the person seeking assistance to end their life and both assessing doctors, and to consider also hearing from family members and others involved in the person’s care.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 407, in clause 12, page 8, line 19, leave out “may” and insert “must”.

This amendment would require the High Court to hear from and question the person who made the application for the declaration.

Amendment 410, in clause 12, page 8, line 27, leave out subsection (6).

The amendment would remove the ability of the court to hear from and question any person other than the person who made the application for the declaration and the assessing doctors.

Amendment 106, in clause 12, page 8, line 30, leave out “(5)” and insert “(4A)”.

This amendment is consequential on Amendment 105.

Amendment 107, in clause 12, page 8, line 44, leave out “(4)” and insert “(4A)”.

This amendment is consequential on Amendment 105.

[Daniel Francis]

I will withdraw amendment 105 later, but will speak to it briefly, as my name is on it. The amendment aims to require court rules to be made that would ensure an adversarial court process, by appointing an advocate to the court. It would also require them to hear from the person seeking assistance to end their life and both assessing doctors, and to consider also hearing from family members and others involved in the person’s care.

In our oral evidence sessions, we heard from Nicholas Mostyn and Alex Ruck Keene about some of the merits of doing so, with reference to the Bill that was before us at that stage. Since then, a significant number of amendments and new clauses have been tabled, so I will not press this amendment to a vote, given the other amendments now before the Committee.

[Juliet Campbell]

I rise to speak to amendments 407 and 410. Amendment 407 would leave out the word “may” and insert the word “must”, and would require the High Court to hear from and question all persons who made the application for a declaration. It is a probing amendment, which aims to question the guidelines for the judge to question and hear from some people and not all people. I will not press the amendment to a vote, but I seek clarity on what the criteria would be for the judge to question some people and not others.

--- Later in debate ---

[Kim Leadbeater]

I think I have responded to the hon. Member for Broxtowe on amendment 407 by saying that the concern will potentially be covered by my new clause 21. On amendment 410, it is also my view that, whether it is the High Court or the panel or whoever we end up having over the course of this Committee, that third layer of scrutiny and safeguarding should be able to hear from other people, not just the patient and the doctor, so I would not support that amendment.

[Daniel Francis]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 410, in clause 12, page 8, line 27, leave out subsection (6).—(Juliet Campbell.)

The amendment would remove the ability of the court to hear from and question any person other than the person who made the application for the declaration and the assessing doctors.

Question put, That the amendment be made.

--- Later in debate ---

[Jake Richards]

In my mind, any decision to give a certificate of eligibility could be subject to judicial review.

Third parties can put evidence before the panel to be considered, but it is not right that third parties might challenge the application. As I have set out before, this is not a dispute but a rigorous safeguarding process. If they have information about the person’s capacity, their diagnosis or any other relevant factors, they can and must ensure that the panel—if not the doctors or indeed the police—be seized of the information. Third parties can appeal the decision by way of judicial review. That would provide for a decision that was

“wrong, or…unjust because of a serious procedural or other irregularity in the proceedings”,

per amendment (a) to new clause 17. An injunction would be applied and the matter would have to be dealt with expeditiously. It is worth saying that all the evidence suggests that that would happen incredibly rarely. In Spain—

[Daniel Francis]

My hon. Friend is about to refer to Spain, as am I. Article 10 of the relevant Spanish law gives a right of appeal on a point of law to a higher court. Does he believe that we will be in line with the position in Spain? How long does he envision judicial review taking, given that we are dealing with somebody who is at the end of their life?

[Jake Richards]

The answer to my hon. Friend’s question is yes: judicial review is clearly an exercisable option in this case. I said “expeditiously” because lots of cases are heard expeditiously; High Court judges hear cases in the middle of the night, if there is a certain urgency. In these cases, one might imagine similar circumstances, but I must stress that they would happen incredibly rarely. All the evidence suggests that. In Spain, where a not dissimilar model is in place, such an approach is rarely used by family members. The vast majority of families attend the panel because they want to offer support and love to the person who has made the choice.

[Daniel Francis]

I just want to confirm that either side has the right of appeal in Spain.

[Jake Richards]

Yes.

The other side of the coin is that we must ensure that the process is workable. In Spain, 20% of people die before the panel hears their case. We must be very careful not to create something that is so burdensome as to be completely pointless. I believe that the amendments tabled by my hon. Friend the Member for Spen Valley aim successfully between ensuring flexibility and rigour. Each case will be different—more so than in any other set of proceedings that I can imagine, and I have thought hard. There will no doubt be some that are incredibly complex, in which the panel may require further assessments and hear from relevant experts, but there will be far more that are solemn and serious but straightforward, and that is correct.

Other amendments, such as amendment (d) to new clause 21, in the name of my hon. Friend the Member for Derby North, seek to mandate certain procedural steps. While I have great respect for her as a former colleague, I fundamentally disagree with her amendment, which would require that the panel “must consider” hearing from persons who may be

“interested in the welfare of the person”.

I repeat that this is not a welfare decision. The panel, just like the High Court judge, is not saying, “What do I think is in the best interests of this person?” It is ensuring that the person has made the decision per clause 1, where we started: “settled”, “informed” and “voluntary”. We enter new ground with this law change, and that is why it is a new process, but to my mind it is safer and workable. Colleagues can be reassured, and I urge people to support the change.

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

Daniel Francis Excerpts

Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger]

I understand, but it would be interesting to know whether the Government have produced a delegated powers memorandum, and when it will be published.

I have four quick points to make about my concerns about the amendments and new clause 8. First, new clause 8 provides that when making the SIs, the Secretary of State must consult the Equality and Human Rights Commission. That is a very positive step, but the other provisions on who should be consulted are, on closer inspection, illusory. The Secretary of State must consult those with expertise on capacity and coercion—that is all great—unless he or she considers that

“it would not be appropriate”.

What the new clause gives with one hand, it takes with the other. It would be good to identify in the Bill who the groups are that the Secretary of State must consult for each power.

Secondly, the vast majority of the SIs made under the Bill, as amended by the amendments, are to be made by the negative procedure. The last time that an SI subject to the negative procedure was annulled by the House of Commons was 1979. The procedure gives only the outward appearance of involving Parliament again. The SIs take effect when signed by the Minister, subject only to a motion of either House to annul them. However, by strong convention the Lords will do no such thing, and the convention in the Commons is that the Government will make time to debate such a motion only if it is put forward by the Opposition Front Bench, and it is at the Government’s discretion.

This being a matter of conscience, it is unlikely that any Opposition Front Bench would be in a position to table such a motion, and no one else has any standing. In practice, that means that there will be no opportunity for parliamentary scrutiny on, which lethal substances may be approved, for example, or on what events should be notified to the chief medical officer. These are not mere details.

Thirdly, on some of the matters addressed in the amendments it is doubtful whether the use of delegated powers is even appropriate, because even if there is a debate and a vote in Parliament, debate on an SI is limited to 90 minutes only and an SI is not amendable. In fact, the House of Lords Delegated Powers and Regulatory Reform Committee considered it improper that the Assisted Dying Bill introduced by Baroness Meacher gave the power to the Secretary of State to decide which substances should be allowed to cause death, because it was an inappropriate question for an SI.

Finally, and perhaps most substantially, clause 32 will establish a vast Henry VIII power. It allows Ministers even to amend primary legislation, and those changes would be subject to a simple yes or no vote in the Commons, without the possibility of amendment. It has been suggested in the Hansard Society podcast with the drafter of the Bill that the power is there because provision on the NHS could be made only if section 1 of the National Health Service Act were modified, removing the duty of the Secretary of State to improve the “physical and mental health” of the public. I look forward to seeing whether the amendments that have been promised include that. However, they will not necessarily amend the National Health Service Act, because that could be done under the statutory instruments created in these amendments.

If such a foundational piece of legislation as the National Health Service Act needs to be modified to allow this law to pass, surely it would be better to do it on the face of the Bill. I want to know why a Henry VIII power is needed. I hope that the Government might bring forward the relevant amendments to the Bill so that a Henry VIII power is not needed. I see that the hon. Member for Spen Valley is nodding, which is encouraging.

I stress that the Committee must bear it in mind that this power would exist on the statute book forever, unless the statute is repealed, so any Government could use this power. The last time that a Parliament found its voice to reject an SI by the negative procedure was back in the 1970s. When we come to a decision on amendment 233 and new clause 8, I will seek to make further amendments.

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

It is a pleasure to serve under your chairship, Mrs Harris. It would be remiss of me not to comment briefly on new clause 8, given that throughout this process I have consistently raised issues around evidence given by the Equality and Human Rights Commission, and given that new clause 8 states that before making a recommendation the Secretary of State must consult the commission.

I remind hon. Members that the commission has told us that it strongly recommends that

“at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights.”

It went on to say that its concerns were that the Bill

“may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.”

It has also stated:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity…It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005.”

I welcome new clause 8, which is in the name of my hon. Friend the Member for Spen Valley, as it would ensure that the Equality and Human Rights Commission is consulted. We await its comments, which hopefully we will have before Report, on whether the concerns that it raised, both in writing before Second Reading and in their oral evidence, have been allayed. However, I welcome this initial commitment, and we will see where that brings us on Report.

--- Later in debate ---

[Naz Shah]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Daniel Francis]

I beg to move amendment 347, in clause 7, page 4, line 4, leave out from “to” to the second “the” in line 5 and insert—

“ensure that steps have been taken to confirm that”.

This amendment would remove the emphasis on the role of the coordinating doctor in making these assessments.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 294, in clause 7, page 4, line 5, after “doctor” insert—

“based on provided evidence that”.

This amendment would require that the doctor bases their assessment on provided evidence.

Amendment 14, in clause 7, page 4, line 15, at end insert—

“(2A) The coordinating doctor must take the report required under subsection (2B) into account in making an assessment under paragraph (2)(b), (f) and (g).

(2B) One or more qualified persons must have conducted a separate interview with the person and made a report to the coordinating doctor on the matters specified in subsection (2C).

(2C) The matters that must be covered in the report required under subsection (2B) are—

(a) any evidence of duress or coercion affecting the person’s decision to end their life,

(b) any difficulties of communication with the person interviewed and an explanation of how those difficulties were overcome, and

(c) the capacity of the person interviewed to understand the information given to them under paragraph (9)(2), (b), (c) and (d).

(2D) A person shall be taken to be qualified to conduct an interview under subsection (2B) if that person—

(a) is a registered medical practitioner who—

(i) is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council, or

(ii) has such training, qualifications and experience as the Secretary of State may by regulations specify,

(b) has not provided treatment or care for the person being assessed in relation to that person’s terminal illness,

(c) is not a relative of the person being assessed,

(d) is not a partner or colleague in the same practice or clinical team as the coordinating doctor,

(e) did not witness the first declaration made by the person being assessed, and

(f) does not know or believe that they—

(i) are a beneficiary under a will of the person, or

(ii) may otherwise benefit financially or in any other material way from the death of the person.

(2E) Before making regulations under subsection (2D)(a), the Secretary of State must consult such persons as they consider appropriate.

(2F) Regulations under subsection (2D)(a) are subject to the negative procedure.”

This amendment, and its consequential and linked amendments (15, 16, 17, 18 and 19), would provide for an independent assessment, via an interview conducted by a specialist, of a person’s capacity to make the decision to end their own life, their clear, settled and informed wish to do so, and that they have made the first declaration voluntarily and without coercion.

Amendment 15, in clause 8, page 4, line 38, at end insert—

“(2A) The independent doctor must take the report required under subsection 7(2B) into account in making an assessment under subsections (2)(b)(d) and (e).”

This amendment is linked to Amendment 14 and requires the independent doctor to take into account an assessment that would be required under that amendment.

Amendment 16, in clause 8, page 5, line 16, at end insert—

“or conducted the interview under subsection (7) (2B)”.

This amendment is linked to Amendment 14 and ensures that the independent doctor cannot be the same person who undertakes the assessment that would be required under that amendment.

Amendment 284, in clause 9, page 6, line 27, leave out from beginning to “refer” in line 28 and insert “must”.

This amendment would require a referral for the purposes of assessing capacity for both assessments.

Amendment 17, in clause 9, page 6, line 27, leave out paragraph (b).

This amendment is consequential on Amendment 14.

Amendment 6, in clause 9, page 6, line 27, leave out “may” and insert “must”.

This amendment would require the assessing doctor to refer the person being assessed for a mental capacity assessment if the assessing doctor had doubt as to the person's capacity.

Amendment 280, in clause 9, page 6, line 27, after “assessed” insert—

“or,

(ii) the person has a mental health condition;”.

Amendment 370, in clause 9, page 6, line 29, leave out

“registered in the specialism of psychiatry”

and insert—

“a practising psychiatrist registered in one of the psychiatry specialisms”.

This is a drafting change.

Amendment 18, in clause 9, page 6, line 32, leave out “or (b)”.

This amendment is consequential on Amendment 14.

Amendment 19, in clause 9, page 6, line 34, leave out “or (b)”.

This amendment is consequential on Amendment 14.

[Daniel Francis]

I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments.

First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured.

These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006.

For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible.

My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation.

These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.

[Sean Woodcock (Banbury) (Lab)]

Given that this is a significantly more serious decision than organ donation, these amendments would seem a very appropriate change to consider.

[Daniel Francis]

I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.

I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.

For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

[Sojan Joseph]

We have discussed this issue many times. Within the Bill there is a provision for clinicians to refer to a psychiatrist if in any doubt. Does the hon. Member think that having that conversation at an earlier stage would be beneficial, rather than at a later stage?

[Daniel Francis]

I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes:

“In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.”

A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.

[Naz Shah]

Does my hon. Friend agree that this is a safeguard that would actually strengthen this Bill, especially given the conversations we have had around repeated coercion?

[Daniel Francis]

Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death.

I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor,

“(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;”

This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.

[Dr Opher]

Could I ask which amendment the hon. Member is talking about? Is it 284 or 6? Amendment 284 says that psychiatric assessment is mandatory in all cases, whereas amendment 6 says it is mandatory if capacity is in doubt. I just wondered which one he was talking about, because I support one and I do not support the other.

[The Chair]

Dr Opher, maybe you want to catch up on the papers and then intervene when you have a question to ask.

[Daniel Francis]

As my hon. Friend will know, my name is down as a supporter of amendment 6. I will get to that in due course. At the moment, I am speaking to amendment 284. I hear what my hon. Friend says—I am talking about the merits of amendment 284, but will get to amendment 6 in my closing comments.

On amendment 284, if a doctor has doubts about the capacity of an applicant, it is good practice to refer that person to a doctor with specialist expertise in that field. That would be true if the doctor was assessing the capacity of a patient to take any important decision, and is surely especially true when we are talking about a decision of this importance. I accept that people will have different views on amendment 6, when we get to it, from those they hold on amendment 284. Amendment 284 would put a duty on doctors to do something that is good practice. Most doctors in most circumstances would do it anyway, but in some cases, some may not. My hon. Friend the Member for York Central, who tabled this amendment, believes that we should write this law as tightly as possible so that doctors have that duty.

Amendment 294, which was tabled by my hon. Friend the Member for York Central, would require the doctor to base their assessment on provided evidence. Again, that is something that most doctors would do anyway in the extremely serious circumstances of a person’s applying for assisted death.

Many laws that we consider in this House relate to things that we are familiar with and understand well; but as my hon. Friend the Member for Bradford West said last week, some laws, such as this one, concern new matters. They are about things to which we need to give due consideration, as we are doing in scrutinising the Bill, because we need to understand the issues that arise. Those laws can introduce powers that could be dangerous if not properly safeguarded. This Bill, as has been accepted, needs strong safeguards. The aim of my hon. Friend the Member for York Central in tabling this amendment was to spell out that a doctor’s assessment of someone seeking assisted dying should be based on evidence. That would make it much less likely that any doctor would not pay sufficient attention to evidence they were presented with.

Lastly, as my hon. Friend the Member for Spen Valley knows, I am a long-standing of supporter amendment 6—I was in that base going into Second Reading. Alongside my concerns about clause 3, which she has heard at length, this matter was a key concern of mine going into Second Reading. I was therefore an early supporter of this amendment to change the wording around the referral from “may” to “must”. That was discussed on Second Reading. I do not want to speak for my hon. Friend, but I think she shares similar views to mine on the matter and suspect that the matter may be supported when we get to that debate.

[Jake Richards]

I will be brief. I will talk about my amendment 280, which I will not press to a vote. There remains an area that needs more exploring in this legislation—it has come up in debates already, but needs to be looked at further—namely, that a person may have capacity but have other mental health conditions that may impair their judgment. In those circumstances, a more thorough assessment than the two-doctor stage there is at the moment would be right. In reality, that is very likely to happen under the current structure of the Bill. My amendment simply attempts to make sure that it is mandatory. Having had discussions with my hon. Friend the Member for Spen Valley, I know that she is sympathetic to that.

There are amendments in the next group that aim to do the same thing. They, along with my amendment, may not be quite right. I urge the Government to look at this issue and see how we can work together to come to a conclusion, because I think that all members of the Committee would want that. I also support amendment 6, as I think everyone does.

--- Later in debate ---

[Kim Leadbeater]

I will do the easy bits first. As the Minister said, amendment 370 in my name is a drafting change to the definition of a psychiatrist, which is obviously very important. These useful amendments have enabled us to have this discussion, and they all come from a good place in trying to enhance safeguarding within the Bill.

On organ donation, my sister-in-law has had two kidney transplants. On neither occasion, to my understanding, did a psychiatrist speak to either her or the organ donor, who in one instance was her brother—my sister-in-law would be very upset that I have mentioned her in Parliament. My understanding of the law is that someone may be referred to a mental health specialist. I am happy to be corrected if that is not the case, but I do not think a consultation with a psychiatrist is compulsory.

As I said to my hon. Friend the Member for Stroud, it is absolutely right that we support amendment 6. From the start, I have been clear that we should move from “may” to “must” in referring to a psychiatrist where either doctor has any doubt. That is a sensible approach, and it covers most of today’s discussion.

However, introducing a whole new system that would almost sit alongside the Bill, and that would change the process, is unnecessary. Those are my conclusions, based on what has been another very interesting discussion.

[Daniel Francis]

I will not come back on anything but, obviously, I will press some of these amendments in due course.

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 294, in clause 7, page 4, line 5, after “doctor” insert

“based on provided evidence that”.—(Daniel Francis.)

This amendment would require that the doctor bases their assessment on provided evidence.

Question put, That the amendment be made.