Sudden Unexpected Death in Childhood

Sarah Edwards Excerpts

Tuesday 24th March 2026 Westminster Hall

[Andy MacNae]

Precisely, and that would be to treat this issue with the importance, urgency and focus that it deserves. The very fact that most research is now charity-led is quite revealing.

This research includes the Pioneer study—a population-based investigation to reduce sudden unexplained deaths in childhood—at the University of Bristol, which is beginning to analyse national mortality data and incorporate family-led research priorities. Science has advanced: genomics, cardiology, neuropathology and data science now offer real hope that the causes that were once thought unknowable may finally be within reach. However, scientific possibility alone is not enough. Findings from the UK’s Pioneer study, alongside the growing body of global evidence on SUDC, must be properly considered and applied. They should inform linked datasets and guide action by organisations such as Genomics England, the National Institute for Health and Care Excellence, the National Institute for Health and Care Research, the Department of Health and Social Care and the NHS.

The opportunity is there, but right now we rely far too much on this limited charity-funded research. If we are ever to shift the dial, as the hon. Member for East Londonderry (Mr Campbell) said, we need a national plan delivering co-ordinated, planned actions that enable and accelerate meaningful projects.

[Sarah Edwards (Tamworth) (Lab)]

I thank my hon. Friend for bringing forward such an important debate. Constituents of mine have asked me to attend not just to thank him, but to support his calls for a co-ordinated strategy. They lost their son when he was three, so they share all such families’ feelings that more needs to be done to get to the bottom of understanding the unimaginable tragedy that many parents have suffered, so there is a bit more closure.

[Andy MacNae]

I thank my hon. Friend for that intervention, which again focuses on the need for co-ordination in the effort to meet the scale of this challenge.

One of the most compelling issues requiring investigation is the association between SUDC and febrile seizures. National and international data show that 30% of SUDC cases involve a history of febrile seizures—10 times higher than in the general population. Frankie Grogan had 12 seizures before he died, but he was never reviewed by a specialist. At this point, it is really important to stress that febrile seizures are very common and SUDC is rare, but the persistence of this correlation—known before the last debate—demands investigation. A national plan must accelerate understanding of the link and determine whether children who have repeated febrile seizures, or a particular subset of affected children, need different pathways of care.

We must also improve public information. Information for families is inconsistent and, at times, invisible. Leaflets on febrile seizures vary significantly across NHS trusts; some fail to mention that seizures can occur during sleep or that monitoring options exist. SUDC itself—including the 60% of cases with no seizure history—is missing from the NHS website. After the 2023 debate, a token reference was added to the SIDS page, but then removed. Imagine a family receiving a post-mortem conclusion of SUDC but finding nothing when they search the NHS website. That is clearly unacceptable, but something that the Government can easily fix.

There has been welcome progress in other areas. The national child mortality database is a world-leading resource. Since the previous debate, the NCMD has created SUDC-specific forms and launched pathways for genomics and cardiac screening. SUDC UK, a charity founded only in 2017, has helped to ensure that families have access to whole genome sequencing through the R441 pathway. That advocacy was born out of what Nikki Speed, chief executive of SUDC UK, describes as the “paralysing fear” that she and many families carry every day. She explained to me that for years after her loss, she got little sleep, because she was constantly having to have a hand on her surviving children to be sure they were alive and well.

That fear leads families to delay trying for another child, even though a new life could be a source of hope and healing amid loss. It is completely rational for a parent to fear, if one of their seemingly healthy children has died without explanation, that their other seemingly healthy children could also be at risk. That is why genomic and cardiac screening is so important: it not only informs research but protects surviving siblings. For some families, genetic analysis has revealed risks requiring vital preventive treatment, yet those crucial tests are currently available only after the post-mortem process concludes, which brings me to the next point.

Paediatric pathology is in crisis, as summarised in a recent report by the Royal College of Pathologists. Families experiencing SUDC routinely wait nine to 12 months, or sometimes longer, for a post-mortem conclusion. During that time, they live in fear—fear for their surviving children, fear of future pregnancies, fear of the unknown. Their grief is suspended and their lives are on hold. Only after that traumatic wait can they finally access genomic testing or cardiac screening to safeguard their children.

After speaking with Brian and with Nikki, I would like to outline the typical timeline for a family affected by SUDC. Your child is fine. Then they die, leaving you traumatised and in shock. The child is taken away from you, and you have no control over what is happening. The ensuing process is statutory, but the response is based on evidence from infant death and so is suboptimal. After scary interactions with the police and in deep shock, you return home to deafening silence or to the child’s siblings, to whom you must tell the very worst news. Then you wait. You do not wait one week or two. You do not wait a month or even six. You most likely wait nine to 12 months. If the pathology is complex, you wait even longer. Throughout the whole wait, you are scared for your other children and scared to get pregnant again. You put your life and your grief on hold. Only then, often about a year later, do you receive the post-mortem report. You have been desperately waiting for this moment, but now it is here it brings back all the trauma of losing your child, and only now are you eligible to see whether anything hereditary is putting other family members at risk.

This is inhumane. When we lost our daughter, we had the answers right away, yet the trauma is still with us. I cannot fathom what it would be like to sit in deafening silence for months, and the long-term damage that that could do. This must change. A national plan should establish faster pathways for cases in which timely information directly affects vulnerable bereaved families and child safety.

Oral Answers to Questions

Sarah Edwards Excerpts

Tuesday 24th February 2026 Commons Chamber

[Wes Streeting]

The hon. Member highlights a real challenge that we have inherited: the disconnection between undergraduate education and training, and the jobs that are available. We are addressing that through our workforce plan. I want to place on the record my thanks to South Western Ambulance Service, which in December improved ambulance response times by just under 30 minutes for category 2 calls. There are still big challenges in the south-west, but the team deserve real credit for the improvement they have led.

[Sarah Edwards (Tamworth) (Lab)]

T5.   My constituents are forced to travel to Burton, Derby and Sutton Coldfield for their NHS treatment, which cannot be provided at the local community diagnostic centre. Some travel up to 30 miles for chemotherapy, with little or no public transport. What is the Minister doing to deliver healthcare investment locally and to improve the transport links between NHS sites so that those who need to use them can get to their treatment?

[The Minister for Secondary Care (Karin Smyth)]

My hon. Friend highlights an important point about the need to have further roll-outs of CDCs, particularly for communities such as hers. We are expanding those and expanding the time available for them. We are also expanding access through the front door through the NHS app and digital. Our new online hospital service will improve the sorts of issues that she mentions so that we bring services closer to her patients and do not expect them to have to travel.

NHS 10-Year Plan

Sarah Edwards Excerpts

Thursday 3rd July 2025 Commons Chamber

[Wes Streeting]

My hon. Friend is right about the importance of dental services, and I hope that his constituents begin to feel the benefit. I also know he is leading the charge on the campaign for Stepping Hill hospital. He regularly raises it with me and other Ministers, and I would be delighted to try to visit his constituency as soon as my diary allows.

[Sarah Edwards (Tamworth) (Lab)]

I thank the Secretary of State for this welcome news. The Sir Robert Peel centre, part of the University Hospitals of Derby and Burton NHS trust, is now running at full throttle, with a range of diagnostic services and treatment options. I congratulate the trust and the Minister on opening that community diagnostic centre, which, as part of the NHS 10-year plan, will transform lives and access to speedy healthcare. Will he celebrate this hospital’s transformation to unlock more than 1,000 treatments a week in Tamworth and the villages?

Hospice Funding

Sarah Edwards Excerpts

Thursday 19th December 2024 Commons Chamber

[Karin Smyth]

It is good to hear the hon. Gentleman supporting his local hospice with his neighbour, my hon. Friend the Member for Colchester (Pam Cox). We will announce allocations for the whole sector and the NHS in the usual way in the new year.

[Sarah Edwards (Tamworth) (Lab)]

St Giles Hospice in my constituency has funding challenges like any other. One thing that staff mentioned to me was the sustainability of when they are contracted to do things. Is the Department considering the timing and not just the funding, to enable better planning and better staff planning?

[Karin Smyth]

Yes, stability and understanding longer-term planning is important for this sector as well as for many others. Certainly, we want to make sure that we work with the sector and the wider NHS, so that we deliver our longer-term 10-year plan, but get to that process in the next few years.

Oral Answers to Questions

Sarah Edwards Excerpts

Tuesday 23rd January 2024 Commons Chamber

[Victoria Atkins]

I genuinely want to work with the Scottish Government, because I am troubled, to put it bluntly, that Scotland has some of the worst health outcomes in western Europe. It has the worst level of drug death rates in Europe, the highest alcohol death rates in 14 years, and there was a fall in life expectancy for three years in a row. We offered to allow Scottish patients to receive lifesaving operations in England, but sadly, that offer has been declined. I remain genuinely willing to work with the Scottish Government to help them with their health service.

[Sarah Edwards (Tamworth) (Lab)]

6. What steps she is taking to increase access to child and adolescent mental health services.

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

We are investing an extra £2.3 billion a year to expand mental health services in England, with the aim of enabling 2 million more people to access mental health support, including 345,000 more children and young people.

[Sarah Edwards]

Many constituents in Tamworth are coming to me in desperate need of support for their children. Those constituents include Kate, whose daughter is at crisis point and has been without a psychiatrist since November; Roger, who has been waiting 18 months for an autism referral for his daughter; and Jess, who has been waiting for an attention deficit hyperactivity disorder assessment for her son. Will the Minister explain what action she is taking so that children, parents and families in my constituency can get the support they need?

[Maria Caulfield]

Through the investment we are putting in, particularly in the hon. Lady’s local area, there are a number of initiatives to help support children and young people with their mental health. The Sandbox scheme, which is a funded NHS service, supports those in the south Staffordshire area; Malachi provides family support across Tamworth and east Staffordshire; and Combined Wellbeing, which is an online resource, covers north Staffordshire. There is also the Family Wellbeing Service, Action for Children for those aged five to 18 with mild to moderate mental health needs, and the Staffordshire Emotional Health and Wellbeing Service for those aged five to 18. I would recommend that the hon. Lady’s constituents look up those services, because we are funding them to improve mental health care for children in her local area.

NHS Dentistry

Sarah Edwards Excerpts

Tuesday 9th January 2024 Commons Chamber

[Sarah Edwards (Tamworth) (Lab)]

Most of us get two sets of teeth in our lifetime. We learn with our milk teeth how to take care of them, and then, as adults, we must take care of the teeth that should see us through to the end of our days. Often overlooked, sadly, is that it is getting harder and harder to take care of our teeth. In my constituency, seven dental surgeries responded to a survey and revealed that five were not accepting any new adult patients. In 2022, the Local Government Association found that Tamworth was one of the most difficult places in the country to register for a dentist, with a striking ratio of 0.065 dentists per 1,000 people. Tamworth is growing. Many new houses are being built in the constituency, and it is consistently raised with me that there are no services to match the growth in population. That refers not only to schools and GP surgeries, but to NHS dentistry. Tamworth’s population has grown by nearly 3% between 2011 and 2021.

We also know that tooth decay is now the most common reason that children aged between the ages of six and 10 are admitted to hospital. It is therefore no surprise that the Health and Social Care Committee report in 2023 branded the current contract “not fit for purpose” and described the state of the service as

“unacceptable in the 21st century”.

The current contract prioritises Government aims over patient care. The Government also did not fundamentally reform the contract when advised to by the Health and Social Care Committee, so patients are left with inadequate provision and a lottery in access to care. Last year, over 12 million people were unable to access dental care. That is more than one in four adults in England and three times as many as before the pandemic. In times of crisis, more and more people are picking up the pliers and turning to do-it-yourself dentistry, with a poll from YouGov indicating that one in 10 adults attempted some form of the dangerous practice last year.

Free healthcare at the point of access is a cornerstone of this country pioneered by a Labour Government, yet recent Healthwatch polling shows that one in 10 people in England paid for private dental treatment in the last 12 months because they could not find an NHS dentist. This is having adverse effects on the detection of oral cancer. I campaigned against the privatisation of cancer care services in Staffordshire and I am dismayed that one of the detection and diagnosis avenues is becoming privatised by stealth. Millions who cannot afford to go down that route are left without the help they need. I share concerns raised by my colleagues that the Government are rolling out a pilot in Cornwall in which only children and the most vulnerable patients will be eligible for NHS treatment.

The Government have been ignoring all the symptoms of decay, and now NHS dentistry is in need of a root canal. It is not enough to wait for the tooth fairy to fix these problems. I support my Labour colleagues in calling for urgent reform. Like a cavity, we must repair the damage caused by this Government. We need Labour’s plan to create 700,000 more appointments a year. We need targeted recruitment schemes to fill the voids of decay left by a lack of strategy. We need reform to the dental contract. It is time to rescue NHS dentistry from this crisis, and get patients seen on time and smiling again.

NHS Winter Update

Sarah Edwards Excerpts

Monday 8th January 2024 Commons Chamber

[Victoria Atkins]

My hon. Friend is a brilliant advocate on the challenges facing his rural and coastal community. We all know that geography is a factor in the difficulties of delivering healthcare in his corner of England, but everything the trust and clinicians do is about trying to improve healthcare for his constituents. I cannot be the only one who felt uncomfortable at the image of some on the picket lines last week singing while our constituents were struggling with cancelled appointments and worried about urgent and emergency care times. I am very keen that we should reach fair and reasonable settlements with junior doctors, but in order for that to happen they must act reasonably, change their minds and call off the strikes.

[Sarah Edwards (Tamworth) (Lab)]

Recently, Tamworth had clarification that mental health provision at the George Bryan Centre would not be invested in. From now on, patients must travel to Stafford for crisis care. Labour has pledged to recruit 8,500 more staff for community-based talking therapies in order to reduce waiting times and crises. Why have the Government not put in place a plan to recruit more NHS mental health staff?

[Victoria Atkins]

We have—in the NHS long-term plan. We have set an ambition to grow the mental health workforce by an additional 27,000 staff between 2019-20 and 2023-24. That is in addition to the at least £2.3 billion of additional funding a year by March this year.