Sudden Unexplained Death in Childhood

Kwasi Kwarteng Excerpts

Tuesday 17th January 2023 Westminster Hall

[Kwasi Kwarteng (Spelthorne) (Con)]

I beg to move,

That this House has considered sudden unexplained death in childhood.

It is a great honour for me to give my first speech as a Back Bencher in about six years on this vital subject. We are here to discuss something that is incredibly difficult to deal with, emotionally very taxing, and one of the most serious medical phenomena in our country—something that has not had the public attention it deserves: sudden unexplained death in childhood, or SUDC.

This vital subject was brought to my attention while I was still in Government. Julia and Christian Rogers came to see me at the beginning of October, when I was still Chancellor of the Exchequer. In that role, I would not have been able to raise this vital subject personally. I pay tribute to my constituency neighbour, my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer), for his diligence in pursuing the subject while I was still in Government. Luckily, as a matter of privilege to me, I can now raise it myself. I cannot think of a better, more urgent subject to raise in my first Back-Bench debate for many years.

When Julia and Christian came to see me in October 2022, they told me the story of their son, Louis, who tragically passed away in 2021 before he reached the age of two. Julia and Christian lived with Louis in Shepperton in my constituency, and they loved their little boy with all their hearts. Of course, no occurrence is more tragic than the death of a small child. It was particularly disturbing that they knew very little about the illness that took away Louis’ life. One can only imagine the horror of discovering one’s child lifeless, and the sheer bewilderment of trying to understand the causes of that tragedy.

Julia and Christian introduced me to other bereaved parents who had gone through this heart-wrenching occurrence. The national charity SUDC UK does vital work to promote more understanding and sensitivity around a subject that, as I said, has drawn too little attention in the past. SUDC is among the leading categories of death in England and Wales for children aged between one and four. As a community, we have to engage more vigorously with this phenomenon.

Technically, SUDC is the sudden and unexpected death of a child between one and 18 years of age. Those deaths, by their definition of sudden and unexpected, often remain unexplained after a thorough investigation, including a post-mortem. This is one of those areas that modern medical science has still not really got to the bottom of, despite the great advances we have made.

[Debbie Abrahams (Oldham East and Saddleworth) (Lab)]

It is good that we can unite and collaborate to address some of the issues raised by SUDC. Christian’s aunt is my constituent, so I learned about Louis from her. Many of us here are parents, and this issue is deeply worrying. Like the hon. Member for Runnymede and Weybridge (Dr Spencer), I was a public health consultant and have come here from working in the NHS. This issue has not had the profile it needs—just 50 research papers, compared with 12,000 on sudden infant death syndrome. I hope we can do some joint working on the issue to raise the profile of risk factors and so on.

--- Later in debate ---

[Kwasi Kwarteng]

I am very pleased to join the hon. Lady in raising the profile of the condition. This category of death has never really gathered the attention it deserves. As far as I know, this is the first time it has been debated on the Floor of the House in this Parliament.

[Andy Carter (Warrington South) (Con)]

I pay tribute to my constituents, the Grogan family, in particular Sarah, a teacher at Cobbs Infant School in Appleton. She has been in touch with me to tell me about her experience with Frankie, her little boy, who died at the age of three. Sarah has helped to inform medical professionals, including GPs, through the videos she has made. I have learned a tremendous amount from her, and I am sure my right hon. Friend will join me in paying tribute to her for her work on this important topic.

[Kwasi Kwarteng]

I am delighted that my hon. Friend has made that contribution. I must press on to the end of my remarks and look forward to what other hon. Members have to say on this sensitive, moving and tragic subject. The silver lining is that we will be able to make more progress in the years ahead.

It is vital to get on the record an undertaking from the Minister and his Department to encourage consistent medical education and training—there is currently very little—to help prioritise research into this category of death. Our urgent, immediate request is an undertaking to increase public information about this tragic phenomenon. How will the Minister help to prioritise scientific research to better understand this phenomenon, and to work out ways we can prevent and reduce the tragic deaths such as those experienced among many of our friends and wider communities?

I have written to the chief executive of the NHS to ask for more and better public information. The website should be updated. I urge the Minister to engage with NHS officials and managers through a commonly agreed platform, on which we can progress.

The initial response to this debate has been incredibly heartwarming and impressive. In the last few days, dozens and dozens of people have written in. They have outlined their experiences and told us about their own tragedies and their families, which have been torn apart and devastated by this phenomenon. It would be invidious of me to talk about those responses individually, but common themes run through all the submissions in this overwhelming response—in all the evidence we have accumulated in the last few days.

The thing that comes out most tragically and vividly to me is the sense of utter bewilderment about the cause of death. Many of us in our lives have dealt with personal tragedy and the passing of loved ones. In most of those instances, we have understood the nature of the illness, and there has been a degree of timing and ability to adjust to an appalling series of events. But let us imagine the death of a child who has all of his or her life in front of them and it is suddenly ended. If we can imagine that for one of our own children, we get a sense of how tragic and difficult that occurrence is. I commend the many people here who have gone through that heart-wrenching experience, who have had the courage to reach out to come and speak to MPs, and who work incredibly hard to make sure this goes further up the agenda.

The other principal thing that I have noticed is that there is not only bewilderment and the initial horror and confusion around the event, but a marked degree of ignorance about this phenomenon among the wider public. People do not know about this. We used to read and hear about what was called cot death, which was technically applied to children under the age of one, but, for the age group between one and four and for older children, there was not even a word or a phrase to describe what happens. If this debate can start a wider conversation about SUDC, I will feel that we have done a bit of our job. This is not the end; this is just the beginning of a wider debate on a deeply tragic occurrence.

Finally, because we do not have much time, I want to thank Nikki Speed, the chief executive officer of SUDC UK, who is here, and Julia and Christian Rogers for bringing this important subject to my attention and enabling us to have a wider debate. As I have said, I think it is the first time that this has been discussed, certainly in my experience as an MP of 12 years, in these precincts. I hope we can continue to work together to find adequate solutions and improve outcomes for people in this country.

We have had successes on the phenomenon of cot death—we made huge strides with that—and it is vital now that we turn our attention and expertise to SUDC. I thank Members from across the House who have listened with real respect not to me, but to the gravity of the debate. I am very interested to hear what my hon. Friend the Minister will say in response to our speeches.

[Derek Twigg (in the Chair)]

May I remind Members that they should bob if they wish to be called in this debate? There are five standing, so I must limit speeches to five minutes or so to get everybody in. I am sure you will all work together to try to achieve that before the wind-ups. I call Tim Farron.

--- Later in debate ---

[Kwasi Kwarteng]

Thank you, Mr Twigg. We have heard some fabulous and heartfelt speeches from across the House. In many years in Parliament, both on the Front Bench and on the Back Benches, I have debated many issues of national importance, but I do not think that any of the issues I have ever spoken about has had such emotional impact on the people affected. I was particularly struck by the concordant note—the note of agreement—from Members of all parties. It seems to me that there are a number of things on which we all agree—a number of important issues where there is broad consensus, and on which we will be challenging the Minister and his colleagues to make progress.

Undoubtedly, research is the key element. We heard that there are something like 13,000 papers on SIDS, by contrast with 50 on SUDC. That balance has to shift somewhat if we are to get improved outcomes on SUDC. Clearly, public awareness has to be a big part of getting better results. Hon. Members have mentioned the NHS website, and I feel very strongly that it should be improved to incorporate many of the things we have discussed today.

Finally, it is really important that we continue to revisit this issue. On many occasions, I have had debates here in Westminster Hall or in the main Chamber where we have said lots of warm words, but we have had very little in the shape of follow-through. On an issue of this kind, which is so important and has touched everyone emotionally, we have to be able to follow through. I urge the Minister to meet Nikki, other families and people involved in SUDC UK’s vital work, so that we can have a dialogue and achieve much better outcomes than we are currently seeing today.

Question put and agreed to.

Resolved,

That this House has considered sudden unexplained death in childhood.