Unpaid Carers

Mark Sewards Excerpts

Thursday 15th October 2026 Westminster Hall

[Mrs Elsie Blundell (Heywood and Middleton North) (Lab)]

It is a pleasure to serve under your chairship, Mrs Barker, and to see the Minister, my constituency neighbour, in his place. I thank the hon. Member for Mid Sussex (Alison Bennett) for securing this crucial debate.

The debt we owe to our country’s unpaid carers is immense. I thank those across Heywood and Middleton North who often balance their caring commitments with a career, family and other responsibilities and somehow manage to ensure that those they care for can live in comfort and dignity. The difference these people make to those they support can never be fully conveyed, but the onus is on us as parliamentarians to stand beside them as, day in, day out, they make someone else their priority.

There are millions of people across the country who are doing so right now, and the number is growing as our population ages. Undoubtedly, every Member present will know a constituent, friend or family member with caring responsibilities. Being an unpaid carer, though commendable, can be deeply isolating and lonely. It is therefore crucial that when it gets too much, there is a community and a safety net that can provide comfort and support to our constituents.

Earlier in the year, during Carers Week, I met with local carers, staff and volunteers from the Carers’ Hub Rochdale at Queen’s Park in Heywood. They were coming together to meet and support each other—they really are a lovely group of people. I thank Deana, Victoria, Grace, Karen, Sarah and others for their unwavering commitment to the hub and those who rely on it.

At one of the group’s regular coffee and chat sessions, they traded stories that could make you laugh and cry, speaking candidly about their struggles, hopes and fears, the truth behind their lives and the loved ones they care for. There were so many similarities in their experiences that bound them together—a community of local heroes who just need a place to come together and take a breath.

The hub’s support for carers goes even further, offering personalised one-to-one support, wellbeing assessments, support plans, community connections with local services and friendly community groups for the carer and those being cared for. That is alongside respite services, which provide the opportunity for a short break for a night or two, and social events with opportunities to make new skills, as well as online services, a helpline and a pen pal community.

The carers I met back in the summer had some clear priorities for me to raise today, and I hope the Minister will touch on them when he responds to the debate. They felt that the earnings threshold is too rigid, creating cliff edges for working carers, and in many ways does not reflect more nuanced arrangements in relation to their caring responsibilities and their day jobs.

[Mark Sewards (Leeds South West and Morley) (Lab)]

My hon. Friend is making a powerful speech, as has every Member who has spoken today. I represent about 8,000 unpaid carers in Leeds South West and Morley—that is about 9% of my constituents—and it is clear that I need to speak for them. Something that has been missing from the debate is those who criticise the offer of extra help to unpaid carers as a cost to the Treasury and to businesses. Does my hon. Friend agree that the greater cost is the fact that 1.1 million unpaid carers have left work in the last two years because many of them had no choice but to do so?

[Mrs Blundell]

I absolutely agree with my hon. Friend; that is a crucial point to make. Many carers are turning down opportunities for advancement and promotion, and that is having a bad effect on the economy as well as themselves. I believe, as do the carers I met recently, that being a carer should not restrict one’s advancement elsewhere. How is the Minister working to ensure that our fantastic carers are encouraged to seize opportunities rather than being dissuaded from doing so?

Another area of focus of my conversation with the group was how we can, and must, work towards a more proactive system to identify and recognise carers. This means NHS trusts having robust and systematic processes for identifying carers, with GP records being properly maintained so that individuals can be identified early, connected to support, and have their own wellbeing needs properly addressed.

I am pleased that young carers are going to be identified quicker and better supported so that they can stay in education without falling behind at school. I am also pleased that schools are to be held accountable in respect of data on young carers’ attendance, alongside secure information sharing across different services. That is critical to ensure that these youngsters do not fall through the cracks or buckle under the weight of their responsibilities at such a pivotal moment. I am pleased that the Government are so receptive to that idea.

Finally, I would like to touch on how we secure high-quality supportive and respite services in every postcode. When carers reach a point where they feel like the walls are closing in—and, in truth, long before they reach that point—flexible respite and replacement care should be available, and should be both reliable and of high quality. Some organisations currently feel they are expected to do more with less with each year that passes. I hope the Minister can speak to that, too.

In closing, I express my sincere thanks to the unpaid carers of Heywood and Middleton North and beyond, without whom the lives of so many people across our communities would be much more difficult. The contribution that these individuals make cannot easily be qualified or quantified, but it can and must be recognised. It is our responsibility to ensure that their voices are heard and that we in turn give them a fraction of the support that they provide to those most in need.

Youth Suicide Prevention and Mental Health Support

Mark Sewards Excerpts

Tuesday 13th October 2026 Westminster Hall

[Liz Twist]

I agree with the hon. Member because we hear that from charities time and again, particularly in this area of work.

I mentioned two charities, but the story is repeated right across the country. It is vital that we tackle the funding issues facing charities that provide preventative work. To prevent suicide among young people we must address the pressures they face. Suicide remains the leading cause of death for individuals under 35 in the UK and the Samaritans report that about 200 school-aged children take their own lives every year. There are so many statistics we could quote about why young people consider suicide, but we already know them too well.

Statutory services, such as the mental health support teams in schools, CAMHS and other NHS statutory services, play an important part in supporting the most vulnerable in our system. The Government must be congratulated on focusing on those areas. However, we must not forget that it is third sector organisations that are able to be adaptable and present in young people’s everyday lives. They can offer a safe, external space where young people can go to feel supported, and they open the doors that young people need to build the foundations of a better life.

The Government have taken positive steps, including the announcement of £343 million in capital funding for new community mental health hubs and emergency centres. That capital investment is welcome, but without people—both NHS staff and, crucially, the voluntary sector—it will not be effective. Hope Haven in Whitehaven, where the NHS and the voluntary sector work together to maximise the quality of care and support for the community, is a good example of where that happens. It is essential that our various strategies work together.

[Mark Sewards (Leeds South West and Morley) (Lab)]

My hon. Friend is making a powerful speech. The Education Committee and the Health and Social Care Committee worked together on this subject and found that the NHS and local commissioners are not taking advantage of the expertise in those third sector organisations. Does she agree that the Government should take note of their report and act on its recommendations?

[Pete Wishart (in the Chair)]

Order. We have about 20 hon. Members waiting to speak with about 10 to 15 minutes available. Is the hon. Lady about to conclude her remarks?

Health Bill

Mark Sewards Excerpts

Report stage & 3rd reading
Tuesday 8th September 2026 Commons Chamber

[Karin Smyth]

I will carry on.

As the hon. Member for Sleaford and North Hykeham knows well, provisions are already in place to appropriately control access to puberty-suppressing hormones for children and young people presenting with gender incongruence or dysphoria. Children and young people with gender incongruence deserve evidence-based care. The Cass review recommended a clinical trial to provide high-quality comparative evidence on the potential benefits and risks of the medicines. That is now under way.

I agree with the comments from the hon. Member for North Shropshire, but I have to disagree with the view of the hon. Member for Sleaford and North Hykeham that, uniquely, access to these types of medicines must be subject to the scrutiny and approval of Parliament. I think that, as a clinician, she understands that.

I would also like to address new clause 143. As the hon. Member for Sleaford and North Hykeham knows, the EHRC’s updated code of practice for services, public functions and associations commenced on 5 August. It provides guidance on how sex-based distinctions in the Equality Act can be applied, including in the NHS. This new clause is unnecessary. This legislation is the law and the law is clear. The NHS will obviously follow the law. New guidance has been drafted and will be published imminently. For the record, I am due next week to meet the Darlington nurses who she spoke for. I agree that they were brave; they should not have had to go through what they went through.

I want to address new clauses 41 and 42 on funeral regulation in the name of the hon. Member for Gosport (Dame Caroline Dinenage), who spoke powerfully on behalf of the whole House; I commend the work that she has done. My hon. Friend the Member for Kingston upon Hull West and Haltemprice (Emma Hardy) has spoken to me in great detail about this issue, as has my hon. Friend the Member for Leeds South West and Morley (Mark Sewards).

The Government were appalled by the offences committed by Robert Bush and the profound harm caused to bereaved families. Every deceased person must be treated with care, respect and dignity. We are undertaking urgent work to develop comprehensive proposals, including formal regulation of the funeral sector to drive out rogue operators and strengthen protection for bereaved families. As the hon. Member for Gosport said, operators that work well will also want to see this. We will begin sharing proposals shortly, and I am very happy to include hon. Members in the discussions.

[Mark Sewards (Leeds South West and Morley) (Lab)]

Does the Minister accept that the Prime Minister said in July that the sector needed to be regulated and that this continues to be a priority for his Government?

[Karin Smyth]

Absolutely, and I am committed to working with my hon. Friend and many other hon. Members across the House.

I was pleased to meet my hon. Friend the Member for Manchester Withington (Jeff Smith) to discuss his amendments concerning medicines. I hope that I reassured him—from his speech, I think that I did—that the Government do support well-designed research into innovative treatments using controlled drugs, where this is conducted safely and appropriately. We also understand the complexities involved, including the need to minimise the risk of harm and misuse. That is why we are working across government to consider how to implement the recommendations from the Advisory Council on the Misuse of Drugs to reduce barriers to research with schedule 1 controlled drugs. I committed to write to my hon. Friend to set that out further; I will do.

A number of hon. Members tabled amendments on issues with their local infrastructure. We have already published the capital plan and improved long-term capital planning to improve local infrastructure.

I think that I have addressed most things—

Nottingham Maternity and Neonatal Services

Mark Sewards Excerpts

Wednesday 24th June 2026 Commons Chamber

[Simon Hoare (North Dorset) (Con)]

The Secretary of State and the shadow Secretary of State, my right hon. Friend the Member for Daventry (Stuart Andrew), are both to be congratulated on the tone and tenor with which they have approached this most sensitive of issues—it is in the very best tradition of this place. It also indicates, I hope, a preparedness to work across the two parties to bring forward speedy solutions to the horrors we are hearing about and have read about in the report.

May I ask the Secretary of State two direct questions? First, the management of bodies post mortem seems to fall between his Department and the Ministry of Justice. We have talked far too often about how to regulate that space.

[Mark Sewards (Leeds South West and Morley) (Lab)]

indicated assent.

[Simon Hoare]

The hon. Member for Leeds South West and Morley (Mark Sewards) is in agreement. Can the Secretary of State’s Department now grip that issue and drive it forward in order to give certainty to all our people that there is dignity and decency for all in death?

Secondly, this issue clearly affects Nottinghamshire most acutely, but there are expectant parents across England today who will be worried about the level of service they can expect and about the outcomes for themselves and their child. What is the Secretary of State proposing to do to communicate with those people, to say that the Government are aware of this issue and are gripping it—that a shake-up is taking place and better services will be provided—as well as to give them some indication of what they can expect, and to give them comfort and confidence in what should be the most exciting period of their lives?

--- Later in debate ---

[James Murray]

I thank my hon. Friend for raising the important issues that she referred to in her remarks. I am happy to make sure that either me or a member of my ministerial team will meet her to discuss them in further detail.

[Mark Sewards (Leeds South West and Morley) (Lab)]

I welcome the Secretary of State’s statement today. It is a difficult and painful, but that is as nothing compared with what those families have been through. On the shocking details he shared with us about babies’ bodies being mistreated in mortuaries, I am sorry to say that that story will be directly relevant to two constituents I am representing. I would appreciate a meeting with him, however brief, to discuss their cases ahead of his Department’s publication of its decisions on the final recommendations from the phase 2 report of the Fuller inquiry. He will also know that Leeds families at the start of their maternity journey—Donna Ockenden is conducting an inquiry into Leeds maternity services—will welcome, as do I, his commitment to ensuring that the duty of candour will apply in that inquiry. Can he confirm for them and for me that all the lessons that Donna Ockenden and he have learned from this inquiry will be applied to the Leeds inquiry, so that those families get the answers they deserve?

Spinal Muscular Atrophy: Newborn Screening Test

Mark Sewards Excerpts

Monday 22nd June 2026 Westminster Hall

[Lewis Atkinson]

The hon. Gentleman is absolutely right and I will come on to talk about screening in just a minute.

[Mark Sewards (Leeds South West and Morley) (Lab)]

It is a pleasure to serve under you, Mr Mundell. My hon. Friend is talking about lifesaving treatments. One of my constituents has a niece who was born with SMA type 1 and previously would have been at risk of dying. My constituent was told that her niece was unlikely to live past the age of two, but because of the advances in treatment that my hon. Friend has just spoken about, she has just celebrated her ninth birthday. However, she did have to be fed through a stomach pump. Does my hon. Friend agree that for £3.1 million we can get full coverage across England, Wales and Northern Ireland, and ensure that all babies are tested, so that those with SMA can be treated as early as possible?

[Lewis Atkinson]

I agree with my hon. Friend, though I think the issue is not mainly financial; I will come on to that in a minute.

As other Members have said, the key point is that treatments are dramatically more effective the earlier they are given: before symptoms appear and before irreversible damage is done. Once motor neurones are lost they do not come back.

Endometriosis Services

Mark Sewards Excerpts

Tuesday 24th March 2026 Westminster Hall

[Jack Abbott]

I thank the hon. Gentleman for his intervention and completely agree with him. I have focused much of my speech on the lack of specialist care in Ipswich, but the postcode lottery is affecting people and communities across the United Kingdom, including in Northern Ireland.

[Mark Sewards (Leeds South West and Morley) (Lab)]

I commend my hon. Friend on his incredibly powerful argument. I also commend Monica and other women here today. Women in my constituency have told me that the pain they experienced was described as “normal and expected” by health professionals. I welcome the Department of Health and Social Care’s commitment to renew the women’s health strategy to tackle inequalities in care. Does my hon. Friend agree that any such strategy should include a commitment to provide the right resources, training and funding? Although there is no cure, women deserve the best possible care.

Funeral Directors: Regulation

Mark Sewards Excerpts

Monday 9th March 2026 Commons Chamber

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right; better regulation is exactly what we are pushing for. In fact, everything needs to be better when it comes to the services governed by those organisations. As he says, the vast majority of funeral directors up and down this country work with incredible professionalism, great pride and integrity. They care deeply about what they do, and about the families and the individuals who they look after. One funeral technician told me that she does not see her work as a job—she sees it as a privilege. Such businesses and individuals have been silent pillars of our communities for centuries.

[Mark Sewards (Leeds South West and Morley) (Lab)]

The hon. Lady is making a powerful speech on an incredibly difficult topic. On behalf of my constituents, Cody and Liam Townend and Zoe Ward, who had horrific things happen to their babies’ bodies as a result of the lack of regulation, I spoke to both main professional bodies, which cover 80% of the sector, and lots of businesses, including the biggest player in the sector. They are united in thinking that regulation is the answer to restoring public trust in the funeral sector. Does she agree?

[Dame Caroline Dinenage]

The hon. Gentleman is absolutely right and I am about to make exactly that point. I am grateful to him for teeing it up so beautifully for me, because it takes only one business to do the wrong thing to erode trust, but unfortunately the case of Elkin and Bell is not the only case. There have been similar cases at Legacies Independent in Hull and Florrie’s Army in Leeds, which I think is the case he refers to, where deceased babies were staged in lifelike positions in a living room. These are unspeakable and unimaginable horrors. There have been other cases where bodies have been found in the most unimaginable condition, but no further action could be taken by the police or others because, simply and incredulously, those businesses have not actually broken any laws.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Dr Zubir Ahmed)]

I am grateful to the hon. Member for Gosport (Dame Caroline Dinenage) for securing this important debate and for her continued advocacy on behalf of her constituents. As the hon. Member for North Dorset (Simon Hoare) highlighted, I was here at this Dispatch Box not so long ago responding to him on the same topic.

We all recognise the profound importance of ensuring dignity, safety and high quality standards of care for people during life and after they die. Bereaved families place immense trust in funeral directors to guide and support us through one of the most difficult and distressing times of our lives and to ensure that our loved ones are laid to rest with the utmost respect. They rightly expect that high standards, professional conduct and appropriate oversight are firmly in place. However, these deeply troubling cases, including the appalling events in the constituencies of the hon. Member for Gosport and of my hon. Friend the Member for Leeds South West and Morley (Mark Sewards), demonstrate that his trust cannot always be assumed.

Although these cases are rare, they have revealed serious weaknesses in our system, as the hon. Member for Gosport has adumbrated this evening. Unacceptable and distressing incidents, such as bodies being stored or treated in ways that cause deep anguish, were able to occur. In some instances, the police lacked the powers they needed to act. In the case of Elkin and Bell, the two funeral directors in the hon. Lady’s constituency, charges included intentionally or recklessly causing a public nuisance, the common law offence of preventing the lawful and decent burial of a body, and carrying on a business with intent to defraud creditors or another fraudulent purpose.

The Ministry of Justice is actively exploring options to strengthen criminal law protections for the deceased, including the potential for new offences as outlined in the Law Commission’s 14th programme of work. This work will identify gaps in the current law and whether new offences are needed to address behaviours that fail to treat a deceased person with dignity and respect. I am pleased to say that we have already taken steps to strengthen and improve standards to safeguard the security and dignity of the deceased.

My Department is responsible for co-ordinating the Government’s response to phase 2 of the Fuller inquiry. In December 2025, the Government published our interim update, outlining the progress made against the 75 recommendations. Of those, 11 have been accepted in full, 43 are accepted in principle and 21 remain under consideration. The 11 recommendations accepted in full cover standards, data and operating procedures in the wider health sector. Highlights include the Human Tissue Authority’s publication of updated guidance on 1 December to ensure that adverse incidents in the anatomy sector are recorded, and NHS England’s agreement to introduce data collection on conveying deceased patients in ambulances for the first time in 2026-27.

Since I was last here at the Dispatch Box responding to the hon. Member for North Dorset, the Human Tissue Authority has also issued universal and generic best practice guidance for those responsible for the care and dignity of the deceased, including organisations not formally regulated by the HTA. That point is particularly pertinent in relation to the hon. Member for Gosport’s comments about the increasing number of direct cremations. In addition, the HTA has begun reviewing its codes of practice. That process will continue into 2026-27. The review may lead to changes to the current guidance in light of the Fuller inquiry recommendations, and it will help us to consider whether the codes could be applied and used by other settings.

Before turning to the discussion about the options to strengthen and improve standards to safeguard the security and dignity of the deceased, I want to remind the House how we got here. Following the unspeakable crimes committed by David Fuller, the last Government established an independent inquiry, sponsored by the Department of Health and Social Care, to investigate how a member of staff was able to carry out such unlawful and abhorrent acts in hospital mortuaries, and how those actions went unnoticed. I must make it clear that crimes such as David Fuller’s are extremely rare. However, that will come as little consolation to the families involved. At this point I extend my deepest sympathies to those families, who continue to bear the weight of suffering, and for whom it must be particularly triggering when debates such as this are held in the Chamber.

Phase 1 of the inquiry focused on the crimes that Fuller committed in the mortuaries at Maidstone and Tunbridge Wells NHS trust. The phase 1 report, published in November 2023, identified failures of management, governance and regulation, as well as a lack of curiosity, which enabled Fuller to continue his repeat offending. It set out 16 recommendations for the trust and one for local councils. In February 2024, the trust published an assurance statement on the implementation of the recommendations from the report. Kent and East Sussex county councils reviewed the position and confirmed that their contracts with the trust required compliance with licensing and regulatory standards to ensure that the deceased were treated with dignity and respect.

On 15 July 2025, the inquiry panel published its final phase 2 report, which dealt with the care of the deceased in both hospital and non-hospital settings. It acknowledged that arrangements for the care of deceased people are complex and often interconnected. It clearly identified multiple organisations, with different governance and operating models, spread across a large number of sectors. It focused on whether procedures and practices in hospital and non-hospital settings, including the funeral sector, were doing enough to safeguard the security of the deceased, and it considered the role of regulators.

The overall recommendation of the inquiry’s chair, Sir Jonathan Michael, was for the Government to introduce an independent statutory regulatory regime to protect the security and dignity of people after death in all settings where deceased individuals are cared for, regardless of the institution, including funeral directors. Eleven of the phase 2 recommendations relate to the introduction of statutory regulation, including regulation of the funeral sector. They remain under consideration. Through the Fuller inquiry recommendations programme board, established in July last year, work continues apace with the Ministry of Justice, the Department for Business and Trade and the Ministry of Housing, Communities and Local Government to assess options for Government intervention to improve standards of care for the deceased in the funeral sector, and, as such, to respond to the recommendations.

[Mark Sewards]

Can the Minister tell me whether any meeting has taken place between those Departments, or whether one is going to take place, and if so, when?

[Dr Ahmed]

The hon. Gentleman is clearly reading my speech. I can assure him that meetings had taken place before my appointment as the Minister responsible for the aspects of the regulations relating to the Department of Health and Social Care. I can also confirm that further meetings are taking place, at my instruction, with the relevant Departments—hosted by me in the Department of Health and Social Care—so that we can genuinely move forward. I know that there is consensus across the House that we must move forward, genuinely and expediently, not only in aligning lines of demarcation and responsibility across those Departments, but in genuinely working together and showing leadership on this issue. I shall be happy to keep the hon. Members who are interested updated on those meetings when they take place.

This is a complex and sensitive matter that requires careful and thoughtful consideration to safeguard the rights and dignity of those who have died, to support their bereaved families, and to ensure that any measures taken are proportionate, given that we are working with a number of small and medium-sized enterprises. To support this work, I am continuing to discuss progress and next steps with relevant Ministers across Government, as I said in response to the intervention from my hon. Friend the Member for Leeds South West and Morley (Mark Sewards). The Government are continuing to consider all options to ensure that high standards are upheld consistently across the funeral sector, and that includes the possibility of introducing suitable and proportionate regulation for funeral directors.

As we discuss these options, we are clear about the need for the approach to maintain high standards, protect the dignity of the deceased and support bereaved families, recognising that any additional costs arising from regulation will ultimately fall on them. At the same time, we must consider the impact on the funeral sector itself.

The funeral sector comprises 6,500 private businesses across the UK, the vast majority of which serve their communities with compassion and integrity, as we have heard tonight. Some 85% are already members of trade bodies that provide guidance, codes of practice and voluntary inspection schemes. The Government are committed to reducing the administrative burdens of regulation on businesses by 25%, and that will contribute to our approach to regulation in this area.

Sudden Cardiac Death in Young People

Mark Sewards Excerpts

Monday 15th December 2025 Commons Chamber

[Amanda Hack (North West Leicestershire) (Lab)]

I thank my hon. Friend the Member for Harlow (Chris Vince) for securing this important debate and for speaking so passionately about the issue at hand. As a reminder, 12 young, fit, healthy young people a week die of an unknown heart condition. That means that by the time we get to Christmas, 20 young people will have lost their lives. By this time next year, it will be 600 people. All of those deaths could have been prevented.

I first became aware of the scale of this tragedy when I bumped into an old school friend for his 40th birthday. He was fundraising for the brilliant Cardiac Risk in the Young, or CRY. Unbeknown to me, he had lost his brother to a sudden cardiac arrest when we were just in our teens. The second time I came across CRY, it was much closer to home. My niece’s boyfriend sadly passed away in his sleep three years ago. He was fit and healthy, having gone on a run earlier that day. His mother Lesley and my niece Izzy have been steadfast in their campaigning for CRY ever since.

What is CRY all about? It does vital work in raising awareness, supporting bereaved families and, most importantly, screening young people. CRY offers electrocardiogram screenings to all young people between the ages of 14 and 35. To date, it has screened more than 340,000 young people since its formation 30 years ago. I was lucky enough to see one of its screening days first hand at Cambridge University sports centre, organised by Hilary Nicholls, who has already been mentioned this evening, in memory of her daughter Clarissa, who passed away aged just 20 while hiking in France.

CRY is calling for the National Screening Committee urgently to review and reconsider evidence supporting the roll-out of a national screening programme, and for a national screening strategy for the prevention of young sudden cardiac death. I would welcome the Minister’s comments on that. When a similar programme was introduced in Italy in the 1980s, it saw a reduction in young people dying of 85%.

Over the past year, I have been speaking to national sporting bodies alongside my hon. Friend the Member for Beckenham and Penge (Liam Conlon) to identify which were already screening their players and how they do it, as well as meeting organisations that represent sports facilities. Just the other week, we heard the excellent news that cardiac screening is being introduced across the netball super league here in England as a requirement from next season, and every player will be screened before the season starts. I also understand that it will be working with CRY to provide screenings for clubs and players where there is nothing already in place. This comes after Kaitlin Lawrence collapsed while warming up for a netball match and hospital scans showed that she had an irregular heartbeat. Lawrence was asymptomatic, young, fit and an elite netball player, and her experience shows just how crucial it is to screen young people playing sport.

I should, however, make it clear that many people can still play sport after receiving a diagnosis. Wonderful tools are available, along with fantastic cardiologists across the country, to facilitate that. We need only observe how successful Christian Eriksen has been since his collapse on the pitch during an international game. This need not be a deterrent; it is information. It is simply not good enough to say that screening young people will put them off sport and should therefore not be widely carried out. Crucially, however, the necessary level of screening is not being undertaken, which means that we must ensure that we have access to defibs and understand how to carry out CPR, which is just as important.

My hon. Friend the Member for Beckenham and Penge (Liam Conlon) and I met Arsenal’s team doctor, Zaf Iqbal, at the club’s training ground earlier this month. Zaf is passionate about cardiac health, and has been using his position at Arsenal—and at his previous clubs—to champion greater awareness of CPR and defibs among school-age children. I also want to draw attention to the incredible work that Brentford FC is doing with its Heart of West London campaign, opening up its ground to offer cardiac screening to the surrounding community; it carries out about 1,000 screenings a year. That kind of engagement is exactly what we need to get the message embedded in our communities of how important it is to be ready in the event of an emergency.

The fact is, however, that our defib network is nowhere near fit for purpose. I recently held a “defib dash” in my constituency, which effectively worked like a small-scale community audit of our defib network. The results were deeply concerning. Most of the constituents who took part had to dash for eight minutes or longer just to get to their nearest defib. Let me remind Members that every minute CPR or a defib is not used on someone suffering from a cardiac arrest, that person’s life expectancy falls by 10%.

[Mark Sewards (Leeds South West and Morley) (Lab)]

My hon. Friend is making a powerful speech, as my hon. Friend the Member for Harlow (Chris Vince) did earlier. May I pursue the question asked earlier by my hon. Friend the Member for Bolton West (Phil Brickell)? Defibrillators can be incredibly useful when they are rolled out to communities, for all the reasons given by my hon. Friend the Member for North West Leicestershire (Amanda Hack). It is hard to find an area in my constituency without a defibrillator that has been fundraised for and installed by volunteers, but I must admit that I do not know how to use one. Following this debate, I will go away and make sure that I do know how to use one, but how can we roll out defibrillator training nationally to ensure that as many people as possible know how to use them in an emergency?

[Amanda Hack]

I thank my hon. Friend for that important intervention. Defibs talk to you; there is no need to be mystified by their use. They are clever bits of kit, and a 999 emergency responder will talk people through the process. I ask everyone please to go and be trained, because this is really important stuff.

Children with Serious Neurological Conditions

Mark Sewards Excerpts

Thursday 20th November 2025 Commons Chamber

[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.

[Mark Sewards (Leeds South West and Morley) (Lab)]

My hon. Friend is making an excellent argument for more support for children and families in this position. A family in my constituency wrote to me about their granddaughter who has Huntingdon’s disease. She is 10, and she desperately needs an education, health and care plan so that she can get to the right special educational needs and disabilities school next year. However, the family found that there are not enough educational psychologists to give referrals, and time is running out. Does my hon. Friend agree that we need to prioritise support for people in that position to get them the education and support they deserve as quickly as possible?

Myalgic Encephalomyelitis

Mark Sewards Excerpts

Wednesday 19th November 2025 Westminster Hall

[Tessa Munt]

I absolutely agree, and I thank the hon. Gentleman. The second area where I would urge the Government to go further is support for people with severe and very severe ME. It is estimated that around one in four people with ME are severely affected. ME is perhaps the only condition where the sicker someone becomes, the less care they receive from the NHS. The recent prevention of future deaths report focused on the tragic case of Maeve Boothby O’Neill, describing NHS care for severe ME as “non-existent”.

In my work on this issue, I have collaborated closely with #ThereForME, a campaign founded by two women, Karen and Emma, who are carers to partners with very severe ME. It can be difficult to comprehend the depth of suffering that ME can bring in its most extreme forms. With his permission, Karen has shared details with me about of her husband James’s day-to-day life.

Before developing ME, James, in his 30s, lived a full life and was a civil servant. Today he is completely bed-bound and spends 99% of his day alone in a dark room, unable to tolerate any noise, light or stimulation. He is hardly able to communicate and is so sensitive to touch that, despite his suffering, his wife Karen is unable to give him a hug or hold his hand. Despite an acute level of need, James is receiving next to no care from the NHS. Karen tells me that her biggest fear is that he deteriorates to the point of needing lifesaving care. She cannot feel confident that the NHS will provide it.

[Mark Sewards (Leeds South West and Morley) (Lab)]

The hon. Member is making an incredibly powerful speech. One of my constituents, an NHS nurse, suffers with ME. He cannot play with his children, walk his dog or undertake basic activities. When he went to the NHS, he got a referral, but was told that it would be nine months before he got an appointment, which forced him to consider private options. An NHS nurse is having to use private healthcare to get results—this situation is untenable, is it not?

[Tessa Munt]

It is not only untenable, but completely absurd. In September 2024, on World Patient Safety Day, over 200 healthcare workers were so concerned about NHS care for ME, and particularly care for severe and very severe ME, that they wrote a letter to the Health Secretary calling for immediate action to save lives. That letter was sent 14 months ago. I am sorry to say that very little has changed since, and they did not receive a response.