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.

--- Later in debate ---

[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.

Unpaid Carers: Inequalities

Daniel Francis Excerpts

Thursday 20th November 2025 Westminster Hall

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

It is a pleasure to serve under your chairship, Ms Vaz. I thank my hon. Friend the Member for Shipley (Anna Dixon) for securing the debate and support the asks that she has made of the Minister. It was a pleasure to join her, carers, Ministers and colleagues last night at the “State of Caring” report launch and it is a pleasure to support Carers Rights Day today.

No one expects to become a carer. It is not something we set out in our plans for the future or our lifetime goals. It usually happens because a loved one falls ill, or, as in my family, because a child has a complex disability, identified early on in life. The burden of care usually falls on women. It is absolutely right that we acknowledge that and discuss today the huge inequalities they face.

One of my children has quadriplegic cerebral palsy. My wife and I decided to give up full-time work in 2016, the year my daughter had 110 medical and physiotherapy appointments, to job share the care components at home while we both worked part time. I accept that the majority of the burden has fallen on my wife over the years. Although we have not been in poverty, it did at that point leave a subsequent hole in our finances, with difficult decisions about the things we could no longer do. Those are the decisions that so many carers make, and they have a wider impact on the economy.

My day started, as it does the majority of days, at 6.15 this morning. I was changing a 12-year-old’s nappy before getting her dressed, fed and putting her in a wheelchair ready for the school bus to come and collect her. There is complexity at the other end of the day, too. This afternoon and tomorrow night, my wife and I will be doing rotas, as we normally do, to work out who is doing the care at the other end of the day. Real pressures are caused by the shortage and affordability of paid carers to support the many families across the country that experience what we do daily.

I strongly welcome the announcement yesterday from the Department for Business and Trade on the terms of reference for the review of employment rights for unpaid carers, and the comments made by the Under-Secretary of State for Business and Trade, my hon. Friend the Member for Halifax (Kate Dearden), at last night’s reception. The review will allow engagement from carers, employers and trade unions to understand how the existing unpaid carer’s leave entitlement is working; to examine options for different models of paid carer’s leave; to consider the options and principles for additional interventions; and to identify options with low or no cost to business and the Exchequer, and the appropriate routes for implementation.

I thank my right hon. Friend the Minister for Social Security and Disability for visiting my constituency back in May, when he met representatives of local charities —Carers Support Bexley, Bexley Mencap, Age UK Bexley, Citizens Advice Bexley, Irish Community Services, Bexley Voice, Bexley Deaf Centre, Inspire Community Trust and Bexley Voluntary Service Council —to discuss the support they give to carers through respite, equipment provision and, notably, access to financial guidance. I have worked with those groups for many years, both as a councillor and a carer, and I thank them for all they do to support my constituents across Barnehurst, Bexleyheath, Crayford, Northumberland Heath and Slade Green. At that roundtable, they set out how they are trying to provide financial support and introduce new innovative ways of working, which I know the Minister will have taken away and be looking at in detail.

I also thank two other local charities, Crossroads Care South East London and Evergreen Care, for their work supporting my constituents, and I pay tribute to carers across my constituency. As a parent collecting my child outside the gates of respite care, I know those parents. I am not just their MP; I have worked with them for many years. They may bring their cases to me, but they are my friends and fellow carers, and I pay tribute to them for all they do in very challenging circumstances.

Lastly, I have a few asks for the Minister. I hear what my hon. Friend the Member for Shipley said about the cycle of issues facing carers. We were lucky because we were working part-time in occupations that paid enough of an hourly rate to keep us going, but carers can face a cycle of poverty. They can also face health conditions as a result of being a carer. I am still lifting a 12-year-old around my house, which is still not fully accessible; she will never walk. We need to face those issues burdening carers, and the support in the 10-year-health plan will help with that.

In Parliament, we are employers too. We have a good ParliCare network for parliamentary staff, but we must always be setting an example. In Parliament, and through the ParliCare network, we as Members and employers must do all we can to demonstrate that we will support carers and that we expect others in the country to do the same.

--- Later in debate ---

[Stephen Kinnock]

I will be very happy to do that. We have launched the 43 sites, so I would be happy to share the documentation on how we launched them and the terms of reference. [Interruption.] I can see the representative from my private office is taking notes.

[Daniel Francis]

I do not expect an answer now, but can I also ask the Minister to take away a point about the complexity of some of these disabilities? Sometimes people are under several different consultants in several different hospitals, perhaps for a neurological condition, for their sight, for epilepsy and so on. I am thinking about both the complexity of the different apps, and different parts of apps, used by different NHS trusts and hospitals, and the complexity of the distances travelled —it is the carer who manages all those aspects. How can we take that away and support the carer in managing the care of the person for whom they are caring?

[Stephen Kinnock]

I absolutely agree with my hon. Friend’s points; I think that neighbourhood health, as a strategy, addresses his points about both the proximity and complexity. By definition, through shifting from hospital to community, we are addressing the proximity point. The fact that neighbourhood health will be based on multidisciplinary teams creates the idea of a one-stop shop for the patient, where their complex needs are addressed in one place.

To ensure that local areas can meet their duties under the Care Act, the 2025 spending review allows for an increase of more than £4 billion in additional funding for adult social care in 2028-29, compared with 2025-26, to support the sector in making improvements. The Health and Care Act 2022 strengthened expectations around identifying and involving carers and ensuring that services are shaped by carer feedback.

NHS England is helping local systems to adopt best practice through co-produced tools, case studies and events such as Carers Week and the Commitment to Carers conference. Initiatives such as GP quality markers for carers, carer passports and digital proxy access are already making a real difference and increasing the number of carers who are identified in the NHS.

Balancing paid work and caring responsibilities remains a significant challenge, and too many carers risk financial hardship as a result. That should never be the case. Supporting carers to remain in or return to work is central to our plan for a modern, inclusive labour market. Employers benefit enormously from the skills, dedication and experience that carers bring. That is why in April we increased the carer’s allowance earnings limit to £196 a week—the largest rise since its inception in the 1970s—meaning that carers can now earn up to £10,000 a year without losing the allowance.

The Carer’s Leave Act, which came into force in April 2024, gives employees one week of unpaid leave each year to help to manage planned caring commitments. We are now reviewing how the Act is working in practice, listening to carers and to employers of all sizes. That includes exploring the potential benefits and implications of introducing paid carer’s leave. To ensure transparency, and as hon. Members have noted, the Department for Business and Trade yesterday published the terms of reference for that review and we will hold a public consultation in 2026 on employment rights for people balancing work and care.

Young carers make an extraordinary contribution, often taking on responsibilities far beyond their years. Our ambition is that every young carer should receive the support that they need to succeed at school and beyond. This autumn, we published key stages 2 and 4 attainment data for young carers for the first time—an important step in understanding and addressing the educational disadvantage that they face. Reforms across education and children’s social care will strengthen identification and support. Ofsted’s new inspection framework, introduced on 10 November, explicitly references young carers in the expected standards for inclusion, safeguarding and personal development.

Local authorities must identify young carers who may need support and assess their needs when requested. We strongly support the “No Wrong Doors for Young Carers” memorandum of understanding that promotes collaboration across children’s and adults’ services, health partners and schools. I encourage all local authorities to adopt it.

NHS England is supporting the identification of young carers through GP guidance and improved data sharing. It is also leading a cross-Government project, co-produced with young carers and voluntary, community and social enterprise partners, to support identification, strengthen support pathways and join up services across education, health and local organisations. Engagement workshops have already helped to shape the next young carers summit, in early 2026.

Our 10-year plan sets out strong foundations for change, and we are now fully focused on delivery. Baroness Casey’s independent commission will shape the cross-party and national consensus around longer-term reforms, including proposals for a national care service. As noted by the shadow Secretary of State, the right hon. Member for Daventry (Stuart Andrew), however, supporting unpaid carers requires commitment across Government. That is why I chair a ministerial working group, working closely with my counterparts at the DWP, the DBT and the Department for Education, to ensure that our policies reflect the realities of caring.

My hon. Friend the Member for Shipley and others asked about the Government’s response to the Sayce review. I can confirm that we will publish that response this year and I am receiving regular updates from DWP colleagues on that matter. Additionally, our research arm, the National Institute for Health and Care Research, is evaluating local carer support programmes to identify what works and where improvements are needed.

As we look to the future, prevention must sit at the heart of our approach. Too many carers reach crisis point before they receive help. That not only places huge strain on families, but leads to avoidable pressure on hospitals, primary care and social services. By intervening earlier—through better identification in primary care, strengthened community networks and improved signposting —we can ensure that carers receive the right support before challenges escalate.

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-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—

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

Daniel Francis Excerpts

Committee stage
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.

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 (Eighteenth sitting)

Daniel Francis Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

It is a pleasure to serve under your chairship, Mr Dowd.

I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that

“the required training, qualifications or experience is to be determined by a person specified in the regulations.”

In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.

As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:

“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”

That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.

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

I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training.

The British Medical Association stated, with regard to my amendments:

“We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer:

1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles.

2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.”

We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said:

“I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.]

I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper.

I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I thank my hon. Friend for his amendments, and I agree with their principle. My concern is that, again, people with mental disorders are left out. Does he agree that, if there were a way to amend the Bill later so that they could be incorporated in these proposals, that would be a positive step forward?

[Daniel Francis]

I would welcome that as a positive step forward—I think there is probably still some work to do in that regard. My hon. Friend and I will have conversations on the wording of that future amendment, but at the moment we are discussing the amendments that stand before us. Any future amendments that may be tabled are not for us currently to consider.

[Dr Tidball]

As my hon. Friend knows, I have a great deal of respect for him, so I gently say that if he brings forward similar amendments later in the Bill, I would be delighted to talk to him and I ask him to include mental disorders.

[Daniel Francis]

I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage.

I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

[Danny Kruger (East Wiltshire) (Con)]

I want to quickly indicate my support for the amendments tabled by the hon. Member for Bexleyheath and Crayford, amendment 290 in the name of the hon. Member for York Central and amendment 20 in the name of the hon. Member for Lowestoft about specific training on domestic abuse and coercive control.

I will now speak to my own amendments, which would require there to be a preliminary discussion before the signing of the first form. At the moment, the Bill allows someone to make the first declaration and state, “I wish to be provided with assistance to end my own life”, without any preparatory discussion about what that entails. It is significant that we heard evidence from Professor House—a professor of old-age psychiatry—that the preferences of the person doing the assessment can bias the capacity assessment. As he explains, we are much more likely to declare that somebody has capacity when they say they want to have the treatment we are offering them, but can we really be sure that the request is freely made and reflects the patient’s wishes?

The fact is, we still do not know from the framework of the Bill how the process would be implemented, but the assessor is likely to be one of a small number of doctors who are willing to do this work on the NHS or somebody who is working for a private provider. Research suggests that the assessing physician’s own personal values and opinions may bias their judgment of a person’s mental capacity. Effectively, research says that the doctor will say that a person has capacity for treatment when he or she wants them to have it or believes that they should. That is significant.

We see from other jurisdictions that the assessment process can quickly become a tick-box exercise in which proper consideration is not given to what might be going on behind the declared wish. In Oregon in 2023, only three people were referred for a psychiatric evaluation by the assessing doctor—down from 33% of people in the early years. It is clear that evaluators have become less cautious when they come to sign the initial paperwork. In California, less than 1% of patients requesting an assisted death are referred for a mental health assessment. These are significant warning signs for us.

I am aware that the hon. Member for Spen Valley has tabled a helpful amendment—amendment 419—to clause 6, which is the clause dealing with the requirement for proof of identity. As I said yesterday, this retrofits a requirement for a preliminary discussion before the process can proceed. It is good that the hon. Member recognises the point that a proper preliminary assessment must be done before the declaration is signed, but I simply do not understand why that should be in clause 6; surely it should be in one single, consistent place, here in clause 5, relating to when the co-ordinating doctor first meets the patient to witness their form. I hope we might recognise that if the principle is being conceded by the amendment tabled by the hon. Member for Spen Valley, we should put that change into its rightful place.

It is worth nothing that at the moment someone could get a proxy to sign for them. The proxy does not need to know the patient or be known to them; they just need to be a person of good standing in the community. They need to undertake no training at all. We have been talking during in this debate about the importance of training, but the proxy who signs on the patient’s behalf does not need to have any training to inform the judgment that they are

“satisfied that the person understands the nature and effect of the making of the declaration”.

Frankly, a stranger to the person, who is not a medic, can sign that declaration on their behalf. At the moment, they can do so without a preliminary discussion taking place. It is only after making that crucial declaratory statement that the co-ordinating doctor discusses the person’s diagnosis. I welcome the tabling of amendment 419, but I think it is in the wrong place. If we do not ensure that that preliminary discussion takes place when we are debating this group of amendments, it might be too late if amendment 419 does not pass, or if it is unsatisfactory, as I think it is.

There is another related problem. Amendment 419 would allow the co-ordinating doctor to confirm that a preliminary discussion has taken place. That means that the discussion could have taken place before the first declaration—in a sense, that is welcome, because that discussion should be taking place—but it does not have to take place with the co-ordinating doctor. The co-ordinating doctor, who is taking responsibility for the whole process of the assisted death for this patient, is not required to have this preliminary discussion themselves. They are not required to go through the very important process of properly discussing the assisted death and informing the patient of what it entails and what the other options are.

My amendment 359 would enhance the significance of the preliminary discussion. It would mean that the doctor who witnesses the declaration—who co-ordinates the process of the assisted death—has had the fullest possible discussion with the patient, and that they genuinely take responsibility for guaranteeing that the patient is fully informed and aware of all of their options. I urge the Committee to support these amendments as well.

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

Daniel Francis Excerpts

Committee stage
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.