Sudden Unexpected Death in Childhood

Caroline Johnson Excerpts

Tuesday 24th March 2026 Westminster Hall

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship this morning, Sir John. I declare an interest as an NHS consultant paediatrician and as a member of the Royal College of Paediatrics and Child Health. I congratulate the hon. Member for Rossendale and Darwen (Andy MacNae) on securing today’s important debate.

The death of a child is every parent’s worst nightmare. It is perhaps even more horrific when such a death happens suddenly, without warning and when no explanation can be found. I would like to convey my condolences to the family of Frankie Grogan, to Cheryl, Darren and Louis, to Nathan and Fiona, to the Rogers, Pitts and Williamson families, and to all other families grieving such a profound loss.

Childhood death is thankfully rare. However, more than 3,400 children aged nought to 17 die in England each year, and in around 40 cases the death cannot be explained. Parents are left with more questions than answers. Why has this happened? Why now? Since many cases are unwitnessed, did the child suffer? What was the cause? Could it have been prevented? Will it happen again to a sibling or a future child?

I want to focus on two questions today: how do we identify the cause of death in more cases? And how can we use that information to prevent future deaths? We can do that because we have done it before. In the 1980s, 2.35 children per 1,000 live births died within between a week and two years. That has been reduced by over 90%. The key factors were research, the Back to Sleep campaign, general safe sleeping advice and the avoidance of cigarette smoke. There is more to be done, but with the right plan, we have shown that lives can be saved.

I would first like to acknowledge some progress, including through the work of Baroness Kennedy, whose 2004 report and subsequent work with the Royal College of Pathologists and the Royal College of Paediatrics and Child Health led to the introduction in 2008 of a standard set of clinical samples, called Kennedy samples, that must be taken in the event of a sudden child or infant death. In most of the trusts I have worked in, there is now a box in each emergency department with all the samples and a list of what needs to be taken so that nothing is missed in any cases.

Child death overview panels, which were also established in 2008, are multidisciplinary panels to review the deaths of all children aged nought to 17. That process was further updated in 2018. When a child dies, all registrars must inform the child death overview panel, of which there are currently 58 in England. An expected death goes to a review meeting to look at the detail of the causes and whether it can be prevented in the future. In an unexpected death, there is an urgent joint agency response meeting including police and education, and a review meeting takes place later. All that information then feeds into the national child mortality database, set up in 2019, which is there to spot patterns and aims to prevent future deaths. It produces several reports each year with detailed guidance for Government on how deaths can be prevented.

It might be helpful to discuss an example. In December 2024, the NCMD published a report on child deaths due to asthma or anaphylaxis. I commend those who produced that report, including my medical colleague Dr Emilia Wawrzkowicz. They found that certain factors increased the risks of asthma or anaphylactic death in children, and that milk was most likely to trigger a fatal reaction. They found problems with auto-injectors that were forgotten, out of date or not with the child, or that the training had not been adequate, particularly in schools. They found issues with indoor air pollution, a failure to recognise life-threatening asthma and that children did not have asthma action plans.

Work has been done in many of those areas, which will have saved children’s lives since. My hon. Friend the Member for Rutland and Stamford (Alicia Kearns) has been promoting Benedict’s law, which hon. Members voted for just last week, to ensure that children at school are protected from anaphylaxis. Can the Minister update the House on progress in delivering the recommendations of the national child mortality database’s report? At the moment, the Government are not obliged to produce a response to the recommendations of the national child mortality database’s reports, unlike many other reports, and I think they should be. A more recent report was on the effect of consanguineous marriage on the rate of child deaths. It would be helpful to have Government responses to show that those reports are being read and acknowledged, and that the work that has been done is leading to change.

I worry about the effect of the imminent abolition of NHS England on the national child mortality database’s work. Child death overview panels do very good work in investigating each child death individually, but ICB funding cuts mean that not only bereavement staff, but investigatory staff, are being cut. The mergers of ICBs mean that local knowledge may be lost as the areas become very large. That is not in line with the statutory guidance in the Children Acts. Can the Minister update us on the Government’s plans in that area?

Whole genome sequencing offers an increased likelihood of finding children’s causes of death, but there is a long wait for results; it can take six months. Families are in great distress while they wait for those results, as we have heard. The Government suggest that they want to expand genome sequencing work, but it has already taken a very long time and the workforce plan has not yet been published. What are the Government doing to make sure we have the right staff and the right capacity to deliver that ambition?

Skin biopsies can be very helpful, particularly in diagnosing inborn errors of metabolism, which in children can cause illness and death, but they are not yet available everywhere. Can the Minister update the House on what is being done to roll out these tests so that, where possible, all causes can be found?

The Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), mentioned the fact that there are not enough pathologists. That is very important because it causes distress and delays, including to post-mortems, and it means that families have to wait much longer for results. Also, some children tragically die overseas, as happened to one of my patients relatively recently. In such cases, SUDC panels rely on being told about it and find it more difficult to investigate. Does the Minister have any comments on that?

Hon. Members talked about research. The Lullaby Trust has been doing gene sequencing on tissue samples from children who died of sudden unexplained death. In four of 20 cases, the tests were able to find evidence of infection, so there is hope that people who have been bereaved by a sudden unexplained death in the past can, with more modern techniques and retained tissue samples, discover the cause in the future. However, that will only happen if the research takes place. This research is charitably funded. We heard about the charity-funded research being done in Bristol, but the Government also need to fund research so that we get as much information as possible to prevent these deaths.

Lastly, I will talk about bereavement support. We have heard about the vital role that it plays in helping families, including siblings, in their time of grief, but I have heard about cuts to that as a result of mergers and funding changes to ICBs. In one case, a phone line has been taken away, meaning that families who want to approach bereavement support have to email and wait for a response—I can see hon. Members frowning. This is clearly not good enough, so I urge the Minister to look carefully at it and take the time to find out what is going on in each ICB regarding the commissioning of these services, so that we are not leaving families without the support they need during the most awful time they could ever experience.

What we have heard today is a call for action. We have heard a call to explain the unexplained, support families better, improve on research and, ultimately, to prevent the deaths of children.

[Sir John Hayes (in the Chair)]

In calling my long-standing friend, Mrs Hodgson, I let hon. Members know that she has agreed to leave a couple of minutes at the end for Mr MacNae to wind-up. In turn, he is about to agree to leave a couple of moments at the end for me to move the motion.

--- Later in debate ---

[Mrs Hodgson]

Yes. I thank the hon. Member for his very moving speech; he often moves me to tears in moments such as this. I will take that away, and ask my officials to look at the work of Queen’s University Belfast, because he makes a very important point.

The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), made a couple of points. I will write to her on the Government’s responses to recommendations, because it is a valid point and one that we should be aware of in future. On the point about ICBs making services more effective by cutting duplication and making sure we have the right people in the right places to deliver quality services, that is something I will also be paying particular attention to, as the Minister with responsibility for children’s health.

[Dr Caroline Johnson]

My point was less that mergers of ICBs would make services more efficient, but more that that is leading to services being cut, which may make them less good, and that the principle that CDOPs look at the local area is diluted if the local area becomes very large.

[Mrs Hodgson]

I take on board what the hon. Lady says. When I write to her on the point about responses to recommendations, I will elaborate further on that point, having made sure that I have understood it correctly.