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Irene Campbell (North Ayrshire and Arran) (Lab)
I beg to move,
That this House has considered e-petition 728677 relating to type 1 diabetes testing for infants.
It is a pleasure to serve under your chairmanship, Sir Alec. I thank the petitioner, Mr John Story, for starting the petition and telling us the devastating story of what happened to his daughter Lyla, who tragically died when the warning signs of type 1 diabetes were missed. I also congratulate him on gathering over 120,000 signatures from across the United Kingdom on a topic that I know is incredibly important to him and many others: in my North Ayrshire and Arran constituency, there were 204 signatures.
The petition, which is called “Funding so all infants are offered Type 1 Diabetes Testing in routine care”, states:
“Fund mandatory offer of testing for Type 1 Diabetes in babies, toddlers, and young children as a routine part of medical assessments at the point of care.”
The petitioner met me to further explain the intent of the petition, which includes legislating so that National Institute for Health and Care Excellence guidelines 18 and 17 ensure that type 1 diabetes testing is carried out when any symptoms appear, and including information on type 1 diabetes in the red book for babies. His campaign for Lyla’s law also asks for public awareness campaigns, to help parents to recognise the signs of type 1 diabetes, and for increased accountability in primary care. The aims of the proposed law include the introduction of a “test, don’t guess” framework to guarantee timely access to care and resources and stop children reaching the point of life-threatening DKA, diabetic ketoacidosis.
The red book for babies is a personal child health record of information such as weight, height, vaccinations and necessary medicines. There is also a newborn blood spot test offered by the NHS, which tests for 10 rare conditions but not for type 1 diabetes. NICE provides guidelines and quality standards for the treatment of type 1 diabetes, and general practitioners are expected to follow the advice in those guidelines. However, it is important to note that they are not legally binding—a point that the petition addresses.
Guideline 18 provides guidelines on type 1 and type 2 diabetes for the diagnosis, treatment and care of children and young people, while guideline 17 provides the guidelines for adults. Guideline 18 states that clinicians should be aware of the signs of type 1 diabetes, and that children and young people who are suspected to have it should be referred immediately to confirm the diagnosis and provide any necessary emergency care. The petitioner’s ask is to ensure that every parent, health visitor and doctor understands that excessive thirst, frequent urination, unexplained weight loss and fatigue are not just a bug or a virus; they could be type 1 diabetes.
There is currently no national screening programme for type 1 diabetes. However, it is important to highlight an ongoing diabetes screening study called ELSA: early surveillance of autoimmune diabetes. While preparing for the debate, I met Professor Parth Narendran, a professor of diabetes medicine and consultant at the University of Birmingham, who leads the ELSA study. A University of Birmingham article states:
“Currently, over a quarter of children aren’t diagnosed with type 1 diabetes until they are in diabetic ketoacidosis (DKA), a potentially fatal condition that requires urgent hospital treatment.”
The hope of the study is that screening children for antibodies could reduce those emergency diagnoses. After a similar pilot programme in Lombardy, Italy became the first country in the world to mandate national screening for type 1 diabetes in children.
The Government response to the petition addresses screening by saying:
“The UK National Screening Committee advises the NHS on screening programmes and, in 2019 concluded that more research and evidence for the benefits of screening for autoimmune type 1 diabetes was required.”
On the ELSA study, the response advises that
“NHS England is working closely with researchers…to ensure that emerging evidence is considered in the development of future national guidance”
on type 1 diabetes screening programmes. It also refers to NHS England’s close work with Diabetes UK, which is leading a “four Ts” campaign to raise awareness of the signs of type 1 diabetes.
Luke Akehurst (North Durham) (Lab)
It is a pleasure to serve under your chairship, Sir Alec. Does my hon. Friend agree that the ELSA study proves the need for wider screening, because of the 17,000 children screened, seven were already living with undiagnosed type 1 diabetes severe enough to require immediate treatment and a further 160 had early-stage type 1 diabetes? The study results from Birmingham show that screening needs to be rolled out across the country to save lives.
Irene Campbell
I agree with the points that my hon. Friend raises. The research and emerging information from the ELSA study should be considered as soon as possible.
In Diabetes UK’s campaign, the four Ts stand for “toilet”, “thirsty”, “tired” and “thinner”. Recognising those symptoms is key to the campaign.
In preparation for this debate, I met representatives of the Royal College of General Practitioners, who advised me that after hearing Lyla’s story, they urgently reviewed their curriculum and made sure that their continuing professional development resources adequately covered type 1 diabetes symptoms in children and followed NICE guidelines. They also said that they are working with NHS England colleagues on the availability and use of point-of-care capillary blood testing for type 1 diabetes. That is a rapid finger-prick glucose test.
Peter Fortune (Bromley and Biggin Hill) (Con)
It is a pleasure to serve under your chairmanship for the first time, Sir Alec. With NHS England set to be abolished, how does the hon. Member suggest the Government ensure that awareness for testing for type 1 diabetes continues? Does she agree that it should not be left to fall by the wayside or be picked up by organisations such as Diabetes UK?
Irene Campbell
I thank the hon. Member for raising that important point. I look forward to the Minister’s response.
The rapid finger-prick glucose test is readily available and can be administered quite easily.
Melanie Onn (Great Grimsby and Cleethorpes) (Lab)
My hon. Friend is laying out, in a very careful and considered way, the importance of the screening process and the ease with which it can be implemented to avoid more tragic stories like Lyla’s. Does she agree that mandatory screening is essential, because most children diagnosed with type 1 diabetes have no family history of the condition, and it would be the quickest and easiest way to ensure that we do not have any more unnecessary tragedies?
Irene Campbell
I thank my hon. Friend for raising that important point. Again, I refer to the Minister’s response. This is a very important issue, and it is crucial that we get it right.
There can be barriers to diagnosis if there is the appearance of another illness, such as a cold or tonsillitis, that can make diabetes more difficult to recognise. Young children are often unable to fully express themselves in relation to symptoms, which can be problematic. There must be more awareness of that possibility. Tragically, as we have heard today, some cases can be missed.
The RCGP said that a GP may not ever see another child in their practice with undiagnosed type 1 diabetes, and that it is a rare occurrence. Time pressures were also commented on. The appointment length is inadequate to deal with potentially more complex issues. As GPs look for the most common diseases in the first instance, they might not think that a glucose test is necessary. It is important to highlight the fact that GPs have the broadest medical specialty. However, the recent RCGP survey found that 64% of members say they do not have enough time to undertake training or continuing professional development alongside their practice work. In addition, the average GP cares for more than 2,300 patients, which is 16% more patients than in 2015, and in deprived communities that figure is significantly higher.
Tom Hayes (Bournemouth East) (Lab)
I thank the 143 constituents who signed this petition. I am representing my constituent David. His son fell unwell, but the GP surgery did not recognise the symptoms and he had to be blue-lighted to a hospital the same evening. He has now recovered—in fact, he has now raised £500 for Breakthrough T1D and Diabetes UK. David wanted me to give a special thank you and shout-out to the children’s unit at Poole hospital and the children’s diabetes team at University Hospitals Dorset. Does my hon. Friend agree that we need all GP surgeries around the country to recognise the symptoms and to take all necessary action when they are detected?
Irene Campbell
I thank my hon. Friend for making that important point. Yes, I agree.
The survey also found that 73% of GPs report that patient safety is being compromised by their workload pressures, and 58% said that they do not have enough time during appointments to adequately assess and treat patients. It is concerning to hear that a high number of GPs do not have time for professional development and quality development. While the number of patients GPs are expected to see rises, the pressure is higher and patient satisfaction is poorer.
Another important point to note is that the NICE guidelines are from 2015. They could be reviewed to recommend that type 1 diabetes be tested for much earlier, and that an infant need not have all the listed symptoms in the guidelines before testing, as the four Ts on their own are not very sensitive at picking up type 1 diabetes. NICE guidelines could prioritise earlier testing of glucose, making checks immediate and not postponed.
Anna Gelderd (South East Cornwall) (Lab)
In South East Cornwall, 177 residents signed the petition. Does my hon. Friend agree that when the first warning signs appear, we must ensure access to simple tests, including a finger-prick test, that can save their lives? I want to recognise a local family: Alison and Mylor have travelled here today to make the case directly. On behalf of all residents in South East Cornwall, I thank my hon. Friend for making this incredibly important debate happen.
Irene Campbell
I agree with what my hon. Friend says. As I say, I am looking forward to hearing the Minister’s response on how we can make progress.
As we have heard, DKA is a life-threatening complication of diabetes, which is caused by extreme insulin deficiency. We urgently need to change and reduce the rates of DKA. One issue is that it is difficult to know exactly how many children have been missed, discharged and reassured after presenting with these symptoms who will then return for later diagnosis.
As well as young children, adolescents have high rates of presenting with DKA, which can be compounded by factors such as deprivation and ethnicity. That must also be taken into consideration.
Steve Witherden (Montgomeryshire and Glyndŵr) (Lab)
Some 17,600 people in Wales are known to be living with type 1 diabetes. Like England, we do not yet have a national screening programme. In 2018, the Cardiff and Vale university health board introduced a series of quality improvement initiatives to support earlier diagnoses. As a result, it has recorded the lowest average incidence of DKA over the past six years compared with the rest of Wales. Does my hon. Friend agree that this approach should be adopted across all health boards in Wales and throughout the rest of the UK?
Irene Campbell
I thank my hon. Friend for raising that point. Yes, I agree. That sounds like a very good way to take this forward.
The petition and the surrounding conversation can serve as a call for change, not only for young children and infants but for all undiagnosed patients with type 1 diabetes who are at risk of their condition leading to dangerous complications. In the words of the petitioner,
“Lyla was bright, full of life, and had her whole future ahead of her. But in a matter of days, everything changed. She became unwell, and like so many parents, we trusted the system to protect her. That trust was misplaced. By the time her condition was recognised, it was too late.”
I look forward to other hon. Members’ contributions and to the Minister’s response.
Several hon. Members rose—
Sir Alec Shelbrooke (in the Chair)
Order. I welcome members of the public to the Gallery. I know that this is an emotional subject that people care deeply about; I hope that they find today’s debate informative. I remind hon. Members to speak through the Chair. If they wish to speak, they should bob to catch my eye.
Tom Gordon (Harrogate and Knaresborough) (LD)
It is an honour to serve under your chairship, Sir Alec. I welcome the Minister to her place; the all-party parliamentary group for diabetes had a positive and constructive relationship with her predecessor, the hon. Member for West Lancashire (Ashley Dalton), and I hope that that will continue.
I am grateful to the petitioners and to the petition’s creator, John, who is in the Gallery. He has been tirelessly campaigning in memory of his daughter, Lyla. His courage in speaking out and pushing for change has brought national attention to the urgent need to improve the way we recognise and diagnose type 1 diabetes. Earlier today, a group of cross-party MPs and of health professionals and families handed in a petition to Downing Street on this matter.
About 400,000 people in the UK live with type 1 diabetes. That includes tens of thousands of children. It is most commonly diagnosed in childhood, but can develop at any age. Crucially, it cannot be prevented at the moment and is not linked to lifestyle. There is nothing a child or their parents could have done differently. Despite our understanding of the condition, too many people are still diagnosed only when they are already dangerously ill. Too often, the warning signs are missed.
As we have heard, the classic symptoms are known as the four Ts: thirst, tiredness, thinning, and needing to go to the toilet more frequently. They are well known and simple to check. A quick finger-prick test can measure blood glucose and confirm whether urgent action is needed, but too many families find themselves making repeated visits to healthcare professionals before a diagnosis is made. In many cases, by the time that type 1 diabetes is identified, the patient is already experiencing diabetic ketoacidosis. DKA is a serious and potentially life-threatening condition caused by dangerously high blood glucose levels and the build-up of ketones in the blood. It frequently requires emergency hospital treatment. More than one in four children in the UK diagnosed with type 1 diabetes are diagnosed when already in DKA. This is an issue of health inequalities, too. We know that among children under five, and among those from deprived backgrounds, the proportion can be even higher.
These are not just statistics. Behind every number is a child, a family and a moment of trauma that could all too easily have been avoided. Lyla Story’s case tragically illustrates that. In the days before her death, Lyla showed the classic symptoms of type 1 diabetes. Her parents sought medical help and she was seen by a GP, but the symptoms were attributed to another illness. Her condition deteriorated rapidly, and sadly she passed away after developing diabetic ketoacidosis.
Since I met John months ago, he has sent endless examples of other families across the country. The same story has rung true time and again. This is not just one example; it is emblematic of our current systemic failure. There is an urgent need to improve awareness among healthcare professionals and ensure rapid testing when symptoms appear. They must be tret as a priority. NICE guidelines already state that children suspected of having type 1 diabetes should be referred immediately to a specialist paediatric diabetes team, but we know that, in practice, signs are sometimes missed or not acted on quickly enough. Ensuring that every GP practice has access to relevant glucometers and that the staff are confident about recognising the four Ts is one of the most simple and effective ways we can reduce those missed opportunities. Education and training can make a real difference. At a roundtable held by the APPG for diabetes earlier this year, we heard how quality improvement work in Cardiff has demonstrated that targeted education for primary care teams can significantly reduce emergency diagnoses.
Alongside improving diagnosis, we are entering a new and exciting phase in our understanding of type 1 diabetes, with the possibility of identifying the condition before symptoms even begin. Research has shown that the immune attack that eventually leads to type 1 diabetes produces autoantibodies in the blood long before symptoms appear. Those markers can be detected through screening, and studies such as ELSA have demonstrated that childhood screening is feasible and can identify children at risk before they become unwell.
Christine Jardine (Edinburgh West) (LD)
It is a pleasure to serve under your chairship, Sir Alec, for the first time. My hon. Friend has touched on training and the need for awareness. One issue is that very often even people with type 1 diabetes, because of the lack of awareness, are not aware of the symptoms as they begin to react or their insulin is very low. Does he agree that what we also need is a general awareness of type 1 diabetes among the public?
Tom Gordon
My hon. Friend is a passionate advocate of diabetes awareness. I completely agree that we need to do more to raise those symptoms with the general public. Everyone knows the key signs of some health conditions—heart attacks or strokes, perhaps—but sadly, type 1 diabetes is not one of those. We can do more in the House to put the issue at the front of the public’s mind; I am optimistic that we can do that across parties, given the diversity of colleagues in this Chamber. Screening offers enormous potential. It will allow families and clinicians to monitor the condition closely, prepare for treatment and, we hope, avoid the trauma of an emergency diagnosis.
I turn to some personal experience. When I was just 13, we were on a family holiday in Turkey. My little sister, who was nine at the time, collapsed by the pool. People do not often think much of it if a growing child loses and gains weight or is thirsty, particularly when abroad in severe heat. My mum had no idea that my sister was a type 1 diabetic; only when she collapsed by the side of a pool and was rushed and blue-lighted to hospital in Turkey did we find out that she was critically unwell and experiencing DKA.
I will never forget that holiday. Fortunately for my sister, everything turned out okay. We got her back to the UK and got her the support that she needed, but it was an incredibly frightening experience for our family and a stark introduction to how suddenly type 1 diabetes can present when it goes undetected. That is one of the reasons why this issue matters deeply to me, and part of the reason why I went on to study biochemistry and a master’s in public health. What can we do? I will turn to what should happen next, but first I encourage any colleagues in the Chamber who are not already members of the APPG for diabetes to join.
I want to press the Minister about a number of areas: first, on awareness of the four Ts, which we have already heard about but needs strengthening across the health system. Training for healthcare professionals, in particular those who work in primary care, should ensure that symptoms of type 1 diabetes are recognised immediately and acted on. Secondly, finger-prick blood-glucose testing should be standard practice whenever a patient presents with symptoms suggestive of type 1 diabetes. NICE guidance should make that expectation explicit, not simply implied.
Thirdly, every GP practice should have the equipment ready to carry out such tests quickly and with confidence. Fourthly, awareness—including of the four Ts—should extend beyond the healthcare system to the personal child health record, or red book, and digital resources for parents, which would help families recognise those warning signs and seek testing earlier. Fifthly, there should be stronger oversight to ensure that learning takes place when diagnoses are missed, including a clearer role for the Care Quality Commission and national improvement initiatives, too. Finally, the NHS should continue to explore what role screening programmes could play in future. Research under way, such as that of the ELSA study, will be crucial in building the evidence needed to support any future national screening programme.
Type 1 diabetes cannot currently be cured, but deaths from undiagnosed type 1 are preventable. Through better awareness, faster testing and continued research, we can ensure that fewer families experience the trauma of delayed diagnosis. If we ended up with a Lyla’s law, we would be honouring the memory of children such as Lyla and the determination of family members such as John, who are campaigning so powerfully for this change.
Ms Marie Rimmer (St Helens South and Whiston) (Lab)
It is a pleasure to serve under your chairmanship this evening, Sir Alec—for the first time as well. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for securing this important debate.
Let me tell the Chamber about Gracie, a little girl from the historic village of Newton-le-Willows in St Helens, in the north-west of England. In November 2018, Gracie was only one year old when she was rushed to hospital. Only days earlier, she had been excited about her first Halloween party, dressed as cowgirl Jessie—a very enjoyable day was had by all. Gracie’s parents thought that she simply had a cough and cold, but within hours she became desperately ill. By the time her parents got to her GP the next morning, Gracie was lethargic, vomiting and soon became unresponsive. A quick finger-prick test in the hospital revealed the truth: undiagnosed type 1 diabetes and diabetic ketoacidosis. Doctors later told her parents that Gracie had been just 15 minutes away from dying, just like that.
Thankfully, Gracie survived, and today she is thriving, but her family’s story had not ended there. They had to fight to access the life-changing diabetes technology that helps to keep little children like Gracie safe. They are still fighting hard to change the law so that access to this technology is no longer determined by postcode but is available to all who need it. Gracie’s story has a happy ending, but many families are not so fortunate. That is why I join colleagues today in calling for funding so that infants can be offered routine testing for type 1 diabetes.
It is right to recognise that the Government have not ignored this challenge. NHS England has established a national task and finish group bringing together leading clinicians, researchers and experts to assess the opportunities and challenges for a national diabetes screening programme. The early surveillance for autoimmune diabetes or ELSA study is exploring the feasibility and the benefits of screening for type 1 diabetes, from newborns all the way to late teenagers. The recent findings of the first half of the study reveal that a type 1 diabetes autoantibody childhood screening programme is workable in the real world. I welcome that work and thank those involved in getting this far. However, I hope that evidence from studies like ELSA will reinforce the lesson from Gracie’s story: that early detection saves lives.
Gracie’s story is a happy one, but too many others end in tragedy. We have the opportunity to prevent this, to detect the disease earlier, to protect children sooner and to spare families the trauma that Gracie’s parents endured. We must act now to ensure that Gracie’s story is remembered as a warning, not repeated as a tragedy. I do not think the country can afford not to go ahead.
Sarah Bool (South Northamptonshire) (Con)
It is a pleasure to serve under your chairmanship, Sir Alec. I start by paying tribute to Lyla Story, a little girl whose death, aged two, from undiagnosed type 1 diabetes has brought us here today. I wish I could have been giving her a tour of Parliament rather than talking in this capacity, but her name will go down in the history of Parliament, in Hansard, because of the dedicated work that has been done. I pay tribute to her parents, Emma and John, who are with us in the Gallery and who have campaigned tirelessly to raise awareness of this condition. I commend their courage and determination in the face of such grief. I think they have much greater strength than many of us would have in a similar situation.
If I had been asked about diabetes five years ago, on 9 March 2021, I would probably have said that my auntie had it, and that it was due to poor diet. If I had been asked the same question on 21 May 2021, I would have given a completely different answer. The change is that I was diagnosed as type 1 diabetic at the age of 33. In the space of 24 hours, from going for a blood test for something innocuous, my world entirely changed, and I was rushed into A&E to be given emergency care.
Like many people outside this Chamber, I had little to no knowledge of type 1. The concept of the four Ts—“tiredness”, “thinner”, “thirst” and “toilet”—were unknown to me. The fact that I started losing weight quite quickly was a bonus, I thought. I did not realise what the signs meant. The fact that 400,000 people in the UK have type 1 was news to me, and that more than one in four children with type 1 diabetes are diagnosed when they are in diabetic ketoacidosis was shocking.
What is diabetic ketoacidosis? It has been mentioned a few times today, and it is a complication that develops when the body lacks sufficient insulin, leading to high blood sugar levels and the breakdown of fat and muscle for energy. This produces harmful chemicals, known as ketones, that make the blood acidic, which is what proves fatal.
The petition before us today seeks to make testing for type 1 diabetes in babies, toddlers and young children a routine part of medical assessments at the point of care. John Story is also seeking to have the NICE guidelines on type 1—NG17 for adults and NG18 for children—updated to include performing a finger-prick test on site at the initial GP appointment, with blood glucose tested using a glucometer. That would occur when a child or adult presented with any symptoms consistent with type 1 diabetes. He would like to see a “test, don’t guess” approach, which we have seen be quite effective for meningitis—we know the signs—and sepsis, so I fully support this concept.
NICE has been receptive to making these changes, but ultimately it will be for the relevant NHS commissioning bodies to put the NICE recommendations into practice. We therefore have to look to NHS England and the Department of Health and Social Care to take up this campaign around increased visibility and testing of diabetic ketoacidosis. I echo the question asked by my hon. Friend the Member for Bromley and Biggin Hill (Peter Fortune): with the disbandment of NHS England, what will we be doing in that regard?
Peter Fortune
My hon. Friend is making an excellent and passionate speech. I think we all here agree that we need to do more to ensure that those with type 1 diabetes get the support they need. While we are here, does she share my concern that 90% of people diagnosed with diabetes are diagnosed with type 2 diabetes, and the total cost of that care in the UK is about £11 billion? Alongside the important support that we give to those with type 1 diabetes, we should be doing more and taking action to ensure that people do not develop type 2.
Sarah Bool
My hon. Friend is absolutely right that 90% of cases are actually type 2. That is probably also why we fail to understand the true signs of type 1, because there is real confusion and conflation of the two. I think it would actually give clarity if they were named slightly differently.
My hon. Friend is also right that a tsunami of cases of type 2 will be hitting us in the years to come, and we have to do a lot more to raise awareness of that, whether that is about diet or by sharing the technology. Many of us are trying to be visible in wearing the technology and the patches, such as FreeStyle Libre and Dexcom. I think that is very good for removing the stigma and helping people to understand what we need to do in the future. We definitely need to see that tech rolled out for type 2, as well as for type 1. It can still be a bit of a postcode lottery for type 1 at this stage, which is something else that we have to work on.
We must not just rely on some of the jabs that have recently become popular. They are a means of helping people to lose weight, which can be a significant part of type 2 diabetes, but they may not be the answer. There are events going on at the moment, saying that we should exercise some caution and make sure that any jabs that are taken are actually legitimate and proper, and not counterfeit. That is a sad side of this: people are seeking medical treatments that could also be harmful.
To go back to type 1, I have managed to secure today that I will introduce a 10-minute rule Bill on Tuesday 14 April to make provision for a universal national programme of screening for type 1 diabetes in children, building on all the work that John has been doing. I am working with medical professionals and charities, including Breakthrough T1D—as it is now called—and Diabetes UK, to look into the Italian model that was mentioned, in the hope that we can one day establish a programme that would catch type 1 before symptoms appear, transforming how we diagnose the condition in the future and helping people to prepare earlier.
A lot more research is needed, because the key thing is the age at which someone can be diagnosed. We are working on three potential age ranges at which there would be repeat tests. That is vital and fundamental for the future, to make sure that we do not have one in four children being diagnosed when in a state of DKA.
In the meantime, I reiterate what the hon. Member for Harrogate and Knaresborough (Tom Gordon) said: we want to see the four Ts built into training and education for all healthcare professionals. The four Ts are very important, but that does not necessarily mean that someone has to have every single one of those symptoms. I did not obviously show the signs of all four Ts, but when I had an HbA1c of 95—[Interruption.] That reaction! To put that into context, a normal person might have an average HbA1c of 20, while the threshold for diabetes is 48; I was at 95 at that stage. My ketones at the point of diagnosis were 2.7. At 3, you are at risk of going into DKA, and anything higher—I understand that Lyla may have been at 6 at the point that she was diagnosed—is critical. Clearly, I was very ill, but I had not picked up on all of those signs; I was not aware. Nevertheless, it is important that we have the four Ts in mind, at least as a baseline.
We also want to make sure that all GP practices actually have the finger-prick test—the glucometer—available. Numerous practices have been contacted and they do not always have that, which I think is quite shocking. As a baseline, we also need to make sure that provision is there.
As John has been campaigning hard for, we want to see the NICE guidelines updated to make sure that this is in the mindset of all our medical practitioners. We also want to see it in the personal child health record—the red book—and within the digital Best Start programme. We the CQC’s role in diagnosing type 1 in primary care to be clarified and strengthened—for example, inspections could assess whether staff receive appropriate training.
We want local commissioners to commit to learning from incidents where type 1 is missed. We want NHS England—or whatever the equivalent is when that is disbanded—to work on this further, and we want the Department of Health and Social Care to review opportunities for national initiatives to drive improvements, such as the Getting It Right First Time programme.
Everyone should rest assured that there are many fantastic representatives in Parliament who are type 1, and we will continue to fly the flag: my right hon. Friend the Member for Louth and Horncastle (Victoria Atkins), who sitting in front of me, is type 1; Mr Speaker is type 1; and, of course, Baroness May in the upper House has been a fantastic advocate over the years. I hope that we can also work with some more celebrity figures, whether that is Nikita on “Strictly Come Dancing”, the actor James Norton, the rugby player Henry Slade or the comedian Ed Gamble. There are figures out there, and we just need to make it much more visible and approachable.
Type 1 diabetes is not a scary condition—although it is a very difficult one, don’t get me wrong. We live with it 24 hours a day, whether we are too hot, too cold, tired, stressed or whatever. From what we are eating to when we are exercising, there is a lot we have to think about, but it is completely manageable with the right support. I want to end my speech with the memory of Lyla and say thank you to John and Emma for their efforts. I say to everyone: please remember those four Ts—“thirst”, “toilet”, “thin” and “tiredness”.
Sir Alec Shelbrooke (in the Chair)
Order. I will now set a two-minute limit, because I will be calling the Front-Bench speakers at 7 pm and I am keen to get all colleagues in.
Lee Pitcher (Doncaster East and the Isle of Axholme) (Lab)
It is a pleasure to serve under your chairship, Sir Alec. I congratulate the hon. Member for South Northamptonshire (Sarah Bool) on securing time to introduce the ten-minute rule Bill. If she wishes me to be part of her team, I am more than happy to do so.
First, let me express how utterly inspirational it is to see a family who have suffered so much heartache turn that grief into something that should mean no one else ever needs to lose a child in similar circumstances. Knowing about the debate, a parent in my constituency of Doncaster East and the Isle of Axholme shared with me the experience of their child, who became acutely unwell with symptoms that, at first, appeared to be nothing more than a stomach bug. When they arrived at A&E, an astute and brilliant nurse carried out a simple finger-prick test for glucose that showed dangerously high blood glucose levels, and the child was rushed to emergency treatment for DKA.
The family were later told that, without that quick check and the treatment that followed, the outcome could have been far worse. The child spent several days in hospital recovering, and is now beginning to adapt to life with type 1 diabetes. Five months on, I have to say that he is doing exceptionally well. I have met him in the past; he does so much in the community, and he manages his condition like an absolute star.
That account underlines why this issue matters. The early symptoms of type 1 diabetes can look very similar to other common childhood illnesses; vomiting, dehydration and a child becoming increasingly unwell may not immediately point to diabetes, but they could be signs of a serious and fast-moving underlying condition. That is why I ask the Minister to find every way possible to raise awareness of type 1 diabetes through all levels, using all the levers of Government.
I am conscious of time, so I will jump to the fact that we need to ensure that this basic pin-prick test can be used consistently and in a planned way. That reasonable and proportionate step could spare families the trauma of seeing their child become critically unwell before they are diagnosed, or families having to endure the very worst. Around Christmas, I read an article in which Lyla’s dad mentioned that Lyla would definitely have got a sticker—
Iqbal Mohamed (Dewsbury and Batley) (Ind)
It is a pleasure to serve under your chairship, Sir Alec. I join Members across the Chamber in paying tribute to Lyla Story, and I extend my deepest condolences to her family. No parent should ever have to endure the loss of a child. The courage and determination shown by Lyla’s parents, Emma and John Story, in relentlessly campaigning to prevent other families from experiencing similar tragedy is nothing short of extraordinary.
With more than 120,000 signatures nationally, including 165 from my own constituents in Dewsbury and Batley, the petition reflects a deep and urgent concern among the general public that no parent should go through what Lyla’s parents did. We have heard about the symptoms and the consequences. Diabetes UK estimates that about 35,000 young people and children have diabetes, 96% of whom have type 1 diabetes. We have heard that one in four cases are not detected until it is too late.
I will jump to my request of the Government, which, supporting John and Emma’s campaign, is to have a national public awareness campaign explaining the four Ts across TV, radio, social media, schools, nurseries, surgeries, pharmacies and health visitor packs. Countries that have run sustained awareness campaigns, such as Italy, reduced DKA at diagnosis from approximately 40% to under 10%.
My final request—I do not have much time—is to mandate the rule that children presenting to a GP with any symptoms of diabetes should receive at finger-prick blood glucose test. Although that is in the NICE guidance, it is not enforced.
Tracy Gilbert (Edinburgh North and Leith) (Lab)
It is a pleasure to serve under your chairship, Sir Alec. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for opening this important debate on behalf of the Petitions Committee, and I thank Lyla’s family for their courage.
Some 95 of my Edinburgh North and Leith constituents signed this important petition, and I thank them for sharing their experiences. In particular, I want to share the story of one mum who told me about the devastating consequences that diabetes had for her family. She told me about her son Nick, who sadly died of this terrible disease aged 28. Nick’s initial diagnosis at 16 was dismissed by the doctor he went to see. It was only the family’s knowledge of what was happening that ensured Nick got to see the specialist he needed. Nick’s mum told me that, in his 12 years as a diabetic, he carried his type 1 diagnosis as lightly as possible, despite having to give himself more than 25,000 injections in that time.
Families such as Nick’s hope that by supporting the petition, our Government will take these vital steps towards making sure that life is made safer for children and adults living with type 1 diabetes. I share that view, and hope that the Government pay close attention to the experience of families across the country. I also urge the Scottish Medicines Consortium to consider similar changes for Scotland, and hope that the Scottish Government ensure that improvements are made for type 1 diagnosis and care.
Seamus Logan (Aberdeenshire North and Moray East) (SNP)
It is a pleasure to serve under your chairship, Sir Alec. I thank the hon. Member for North Ayrshire and Arran (Irene Campbell) for opening this important debate, and I pay tribute to the members of the public present, who no doubt represent thousands of people online tonight.
The Lyla’s law campaign is a powerful reminder of the devastating consequences of missed or delayed diagnosis for type 1 diabetes in children and young people. It calls for improved education and guaranteed routine testing for children showing early symptoms before they reach diabetic ketoacidosis, which is a life-threatening condition that requires emergency hospital care. Many families and parents learn about their children’s condition only once they have reached this potentially fatal stage. Not only is that traumatic and dangerous, putting a child’s life at risk, but it creates avoidable costs and puts strain on emergency healthcare services. Families should not have to wait for those serious complications to occur for a diagnosis to be made.
Despite this, the UK Government claim that there is still “insufficient evidence” to support routine mandatory testing for type 1 diabetes in babies, toddlers and young children. That is why the petition is so important. It calls for existing NHS guidance, which recommends the immediate testing of children and young people showing symptoms of type 1 diabetes—the fours Ts, which have been mentioned—to be formally legislated for. Current guidance alone is clearly not enough, and a standardised approach for all GPs and doctors is urgently needed.
A member of the Insulin Pump Awareness Group in Scotland recently wrote to me mentioning that they often wonder whether their own diagnosis 29 years ago would have been picked up had they not been made aware of the four Ts symptoms through family.
Douglas McAllister (West Dunbartonshire) (Lab)
My West Dunbartonshire constituent Janice shared with me the very personal story of her daughter, who three years ago became so unwell that she was admitted to hospital. She was desperately ill, but she survived. The signs had been there, but they were missed, with the diagnosis coming at the very last moment, in an emergency setting. Will the hon. Member join me in commending the work of Diabetes Scotland and its efforts to improve testing, screening and early diagnosis in Scotland?
Seamus Logan
I completely agree with the hon. Member and endorse his suggestion.
This topic is personally important to me, not only because so many family members have been diagnosed with type 1 diabetes but—as the hon. Member for Edinburgh North and Leith (Tracy Gilbert) referred to—because of the premature death in 2022 of my nephew Nick Logan from complications arising from his original diagnosis at the age of 16.
Italy made history in 2023 by becoming the first country to introduce nationwide screening for the early detection of type 1 diabetes in children. In 2021, Scotland also led the way by being the first country to offer C-peptide blood tests to everyone with diabetes to address misdiagnosis. Although that may not be the same as a routine screening programme for type 1 diabetes, it demonstrates how routine testing can be implemented.
Childhood type 1 diabetes rates in the UK are among the highest in the world, ranking fifth globally for children aged 14 and under, according to the International Diabetes Federation. In conclusion, it is essential that the UK Government take a more targeted and strategic approach to improving the care and diagnosis of children and young people showing type 1 diabetes symptoms. That starts with the implementation of routine testing—
Josh Newbury (Cannock Chase) (Lab)
It is a pleasure to contribute to this debate with you in the Chair, Sir Alec. I warmly welcome the Minister to her new role.
Earlier this year, I was contacted by Michelle, the mum of a bright little boy called Toby who was diagnosed with type 1 diabetes when he was just 20 months old. Michelle told me that when she was a child, she happened to overhear a conversation between her mum and the mum of her best friend who had just been diagnosed with type 1 diabetes. That meant that Michelle recognised Toby’s symptoms, but, if she had not heard that conversation, she might never have made the connection.
Michelle took Toby to Cannock Chase hospital and raised her concerns about some of his symptoms, such as thirst and heavy nappies, with the doctor. He said that Toby just had an ear infection, but Michelle trusted her gut and insisted on a test. She was then told to take him to A&E due to his extremely high blood glucose and ketone levels, and it was there that he was diagnosed with type 1. Not all parents will have that knowledge. Not all parents will know what to look out for, nor should they. Michelle told me that, in many ways, they had been one of the lucky families. It was because she had recognised the symptoms and pushed for a test that Toby avoided going into diabetic ketoacidosis.
I want to pay tribute to Lyla and her parents, as others have, for campaigning tirelessly in their daughter’s name. As a dad myself, I cannot begin to imagine the pain that they must have been through, and I hope that through raising awareness of stories such as Lyla’s and Toby’s, we can bring about change.
A single finger-prick blood glucose test is cheap and takes seconds. In fact, when I met three-year-old Toby, he showed me that he can already do it himself. Toby has thankfully had excellent care from the team at New Cross hospital, who are helping his family navigate their new way of life, but sadly, that was not the case for Lyla, or for so many families. That is exactly why we in this House need to fix this.
Ruth Jones (Newport West and Islwyn) (Lab)
It is a pleasure to serve under your chairmanship again, Sir Alec. I welcome the Minister to her place; it is great to see her. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for introducing this e-petition debate on behalf of the Petitions Committee, and the 240 of my constituents who signed it. I also thank the Story family for submitting the e-petition and for all the work that they do to raise awareness of the importance of early diagnosis and type 1 diabetes in memory of Lyla.
Prior to this debate, I was honoured to speak with Welsh campaigners Beth Baldwin and Emma Hopkins from Rewrite Peter’s Story—and Beth is here today in the Public Gallery. Beth’s son Peter suddenly and unexpectedly died aged 13 in 2015 from diabetic ketoacidosis as a result of undiagnosed type 1 diabetes. Beth had taken Peter to the GP with flu-like symptoms. After being diagnosed with a chest infection, Peter was prescribed antibiotics and sent home. Less than 24 hours later, Peter was fighting for his life. The first responder who was called to the house by Beth, on seeing Peter, gave him oxygen and performed a finger-prick test. His blood sugar was extremely high, and he was rushed to A&E. Unfortunately, he was already in diabetic ketoacidosis, and died a few days later.
Peter’s death was preventable. Instant blood glucose finger-prick tests are easily available and take seconds, but each year hundreds of children are hospitalised with diabetic ketoacidosis because of delays in diagnosis. Each year, 10 of those children end up dying. Concerningly, 40% of all child diagnoses occurred only once they reached critical care.
I am very pleased to hear about the campaigning of Lyla’s family and Peter’s family, and once again I want to thank them all for their work in drawing attention to these important issues. We must move swiftly to extend awareness and training on type 1 diabetes, and to ensure medical guidance is robust and that all primary care sites have the necessary testing equipment. We cannot afford to lose any more lives.
Amanda Hack (North West Leicestershire) (Lab)
It is a pleasure to serve under your chairship, Sir Alec. I thank John, Lyla’s father, for starting the petition. It was signed by 227 of my constituents in North West Leicestershire, and I would like to share as many of their experiences as I can in the time available. Throughout these stories, I heard over and over again the four Ts —“toilet”, “thirsty”, “tired” and “thinning”. In all the emails I have received on the matter, the one consistency has been families having to advocate for their children to get the care that they so obviously needed.
Jade, mum of Harry, said:
“Harry is not your ordinary child, he has a long list of disabilities, and he is nonverbal autistic. Harry could not tell me how he was feeling…but he lost so much weight.”
After weeks of trying to see a GP, she finally managed to get a doctor to take his blood sugar levels. Harry’s blood sugar was at 30 millimoles and he was in DKA, with ketones so high that he was on the verge of cardiac arrest. Jade said that day will haunt her forever.
Mark’s story with his daughter Katrina is similar. Katrina was diagnosed at two and a half years old. Although, unlike Harry, she did not suffer from DKA, it was a traumatic experience. Katrina was a healthy child, and when she started having night terrors, waking up drenched in sweat with heavy nappies and craving pasta at 11 pm, they knew that something was desperately wrong. The nurse recommended a urine test, and Mark got a phone call while his daughter was in nursery asking him to take her to the hospital immediately. She was admitted for 10 days in hospital.
A third constituent shared that her son was diagnosed with type 1 in May last year, just weeks before his seventh birthday. Fortunately, he was diagnosed early, and it was a non-emergency situation. It should not be a life-threatening situation just to get a diagnosis. Too often, healthcare professionals miss the key symptoms. When symptoms are missed, sadly, children like Lyla have their lives cut short. Screening for type 1 is crucial in infants so that we can help save lives.
Julia Buckley (Shrewsbury) (Lab)
It is a pleasure to serve under your chairmanship, Sir Alec. It is incredible to see that more than 121,000 people signed John Story’s powerful petition, which has enabled today’s debate. I am here to give two clear messages.
My first message is to apologise to local campaigners, particularly Mandy Hudson, who wrote to me about the need for this testing. I wrote back to indicate my support for the campaign, but I also gave information about the Government’s investment in both type 1 and type 2 diabetes. That caused unnecessary hurt to families and sufferers of type 1 diabetes. Such is the divergence between the two conditions—their causes, symptoms and treatments—that some campaigners told me that they wished it had been given a completely different name. The stigma and lifestyle cause of type 2 is irrelevant to the sufferer of type 1 diabetes. Following my correspondence with the families, I wrote to the Secretary of State for Health personally to reiterate my support for simple testing, but also to lodge a plea for separate messaging and communication plans for each disease.
My second message is the story of yet another family who fell victim to the lack of testing for and knowledge of type 1 diabetes in children. I met Jack Harvey, dad to little Albie Harvey, who is now a 20-month old toddler in Shrewsbury. A few months ago, he became very unwell and was diagnosed by the GP with tonsillitis, but did not respond to antibiotics. His parents met three GPs and spoke twice to 111 over the course of 10 days, before taking Albie to A&E, where he finally got his blood sugar test. His sugars were 39.9 and his ketones were 6.9. Luckily, he was blue-lighted to Telford, his life was saved and he is now receiving excellent care under the diabetic team at Shrewsbury.
I hope that the campaigners who have come all the way to London know that our Ministers are listening to the debate. Our new NHS plan is all about prevention and primary care. I am hopeful that we will listen to their message.
Mr Alistair Carmichael (Orkney and Shetland) (LD)
I am grateful to you for allowing me to take part in the debate, Sir Alec. I apologise for my late arrival; I had a five-hour delay to my flight today, which is all part of the joys of highland living. I particularly wanted to take part as a consequence of representations I received from my constituent Gina Tait, who, but for the grace of God, could have found herself in the same situation as Lyla’s parents, with the same consequences. The fact that she did not was because she was simply not prepared to take no for an answer.
Gina told me that after her daughter had been seen the first time, by a GP in Britain, she was left feeling that she was somehow a pushy parent. Then, when she was on holiday in Morocco, she took her daughter to see a GP there. Again, she was told that there was nothing particularly wrong, and was nearly fobbed off with antibiotics for tonsillitis. It was only when she insisted for the third time that her daughter was diagnosed. Gina was not a pushy parent. She was a good mother who knew her own child and, as she says, “something just felt wrong”.
As well as Lyla’s law, which I 100% support, we need a campaign here and now so that parents have better awareness of the symptoms—the four Ts to which reference has been made. In that way, parents can act for themselves and take better control of the healthcare that is there for their children. I am delighted to see this petition debate today, and I am grateful to you, Sir Alec, for allowing me to take a brief part in it.
Laurence Turner (Birmingham Northfield) (Lab)
Thank you for calling me to speak, Sir Alec. I am grateful to everyone who made the petition and the debate possible. In the short time available, the best service I can provide is to represent just some of the 181 Northfield constituents who signed the petition, in their own words. My constituent Charlotte said:
“As a child, at the age of 10, I was misdiagnosed with a stomach bug by my GP. I was later on that same night in a coma… My parents told my GP that I was showing signs of the 4 Ts—toilet, thirsty, tired and thinness. That same night, I nearly lost my life. The doctors and nurses prepared my parents for the worst, but thank God—I survived the coma, and was blessed to still be alive.”
Sadly, these are not just cases that have occurred in the past. Only a few short years ago, another constituent had to take her young child to accident and emergency. In her words,
“The A&E doctor ran the usual diagnostic tests and said: ‘Go home, continue the penicillin, and let them rest.’ I refused. Something in my gut told me this wasn’t right. The doctor then agreed to do a glucose finger prick test, which showed dangerous blood glucose and ketone levels. If I’d have taken him home that day then they wouldn’t be with us. That haunts me, and I never want another family to live through the trauma that we did.”
I am sorry to my other constituents whose stories I cannot recount in the few minutes available, but the common thread that unites them is some pre-existing awareness of type 1 diabetes. Children’s chances in life should not hang on that probability.
Extensive reference has been made in this debate to the ELSA study, undertaken and led by the University of Birmingham and across the city. The two-year results of that study show that a national screening test programme is feasible, with high levels of acceptance and returns. I warmly welcome the Minister to her place. When she responds, I will be grateful if she can update the House on the process by which the external advisory committee could reconsider the case for a new infant screening programme.
Sir Alec Shelbrooke (in the Chair)
I call the Liberal Democrat spokesperson.
Helen Maguire (Epsom and Ewell) (LD)
It is an absolute pleasure to serve under your chairship, Sir Alec, and to have the opportunity to debate this incredibly important issue.
As a mum, I cannot begin to imagine the pain of Lyla Story’s family after she died last May from undiagnosed type 1 diabetes, less than 24 hours after a doctor diagnosed her with acute tonsillitis. It is an absolute tragedy that Lyla’s life was cut so short, and it is clear that change must happen. Every child must get the care that they need, when and where they need it. Every child should expect the best possible opportunities to grow up healthy and to exercise, play and eat well.
Charities such as Diabetes UK have been instrumental in raising awareness of the common symptoms known as the four Ts, to which many hon. Members have alluded today: “toilet”, “thirsty”, “tired” and “thinner”. However, children are too often rushed into intensive care and hours later face a diagnosis of type 1 diabetes and diabetic ketoacidosis. DKA can mean a coma, organ failure and a traumatic hospital stay. If it is not treated quickly, it can be fatal.
No child or parent should have to face that terrifying reality when the tools are at our fingertips. NICE guidance is clear: health professionals should know the signs and symptoms of type 1 diabetes, and any child suspected to have the condition should be referred on the same day to a multidisciplinary paediatric diabetes team to confirm the diagnosis and provide immediate care.
The Liberal Democrats believe that early diagnosis of long-term health conditions is essential, offering the best opportunity for those suffering from type 1 diabetes to live healthy, long and fulfilling lives. I welcome the Minister to her place; will she confirm what steps have been taken to ensure that medical professionals are confident in identifying type 1 diabetes in children to avoid a traumatic late diagnosis? Research shows that patients who see the same clinician for most of their care have fewer hospital admissions and lower mortality rates. I therefore implore the Minister to take forward the Liberal Democrat proposal to guarantee a named GP to all those with type 1 diabetes to help improve their long-term care once a diagnosis is achieved.
Another key issue with type 1 diabetes is that we do not know the exact cause of the disease. It is essential that the Government drive research so that we can establish the evidence needed for a viable and effective national screening programme. I urge the National Screening Committee to take on board all new evidence as it emerges, not least from the ongoing study of screening children aged three to 13, which is funded by the National Institute for Health and Care Research.
The Government must also take steps to facilitate medical research in the UK to make progress on paediatric type 1 diabetes testing and other conditions. Will the Minister consult the Chancellor about whether she will consider reversing the employer national insurance contributions hike to support the life sciences sector and boost research and development funding to end this information desert?
The Liberal Democrats are clear that no child should die because of a missed or late diagnosis. The UK needs to be a world leader on research, diagnostics and patient experience. I think of Lyla and the many other children whose lives could have been saved, and I ask the Minister to pay attention to the many calls in this debate to ensure that no family spends a lifetime grieving.
Dr Caroline Johnson (Sleaford and North Hykeham) (Con)
It is a pleasure to serve under your chairmanship, Sir Alec. I declare an interest as an NHS consultant paediatrician and a member of the Royal College of Paediatrics and Child Health. I congratulate the Minister on her new role. It is a very important role in the Government, and I know that she will do it with great care and thoughtfulness.
I congratulate the hon. Member for North Ayrshire and Arran (Irene Campbell) on introducing this important debate. I also give condolences to Lyla’s family and commend them on their bravery and their courage. I pay tribute to their work to prevent the same tragedy from happening to other families.
When one becomes a doctor, one gets trained in resuscitation. Many people are familiar with the resuscitation ABC—“airway, breathing, circulation”—but the full version is ABCDEFG: “airway, breathing, circulation, don’t ever forget glucose.” Sadly, some people do, as we have heard today. Every doctor is taught the signs of diabetes mellitus, what to look for and when to test sugar. I am hesitant to legislate medical guidance, because that still requires the awareness of the guidance’s existence. Changing the guidance in law instead of simply in practice may also reduce flexibility as evidence-based judgment comes to the fore. What is the Minister doing to increase awareness among doctors and wider clinical teams, as well as families and the wider public, so that we do not see cases of tragedy and near misses like those that we have heard about today?
Diabetes type 1 can present at any age, but it commonly presents in primary school and the early years of secondary school. Detection before it develops is challenging, and presentation is often very acute in children. It is an autoimmune condition, so antibodies are developed by the insulin-producing cells in the pancreas, creating a deficiency in insulin, which is the cause of the illness.
The ELSA study, which has been mentioned, is looking at how we can detect that before a child becomes sick. It will look at 70,000 children. It starts with a simple finger-prick test, similar to that for sugar. It tests for three antibodies; if the person has any of those, they get a second test for four antibodies. We know that if they have two or more of those antibodies, their chance of becoming diabetic in the next 10 years is 75%. We also know that a medication called teplizumab, which was licensed in August 2025 for children over eight years old, may be able to prolong that time. There may be opportunities for further awareness and investigation for early diagnosis, but also for further drugs to be developed, which can delay the onset of diabetes in people who are susceptible to it. The analysis for the first 17,000 patients showed that 75 children had one antibody and 160 had two antibodies.
One of the challenges is determining the best age to test. When did these antibodies develop? What do they develop in response to? Does the test need repeating? If so, how often? I commend my hon. Friend the Member for South Northamptonshire (Sarah Bool) for her ten-minute rule Bill, which will provide leadership on those very important questions.
I also want to ask the Minister about diabetes treatment. For those who are diabetic, blood sugar control is a lifelong preoccupation, as my hon. Friend described. This is not just about the short-term risks of hypoglycaemia and diabetic ketoacidosis, although those are serious enough; the long-term complications from poor diabetic control include heart failure, strokes, amputation and blindness. The latest report from the Royal College of Paediatrics and Child Health showed that there were 33,437 children in England with diabetes mellitus, of whom 93.3% have type 1. These children have regular health checks, but only 66% of the over-12s receive those health checks. What is the Minister doing to increase the proportion? Haemoglobin A1c, or HbA1c, is a chronic measure of what the sugar level has been over time. It is 70.8 in black children, compared with 63.1 in white children and 63.9 in Asian children. What is the Minister’s understanding of what causes that disparity and what is she doing to improve the HbA1c in all children?
Technology can really help. The latest figures from an RCPCH study in this area, from 2023-24, show that continuous glucose monitoring of children increased from 49% to 79%, insulin pump usage increased from 45% to 56% in a year, and the use of the hybrid closed loop system increased from 15% to 36% in just one year. Such devices really improve diabetic control. What are the Government doing to increase the rollout of these technologies?
No one in this House wants to see any child become very sick or to see any family suffer the heartache that Lyla’s family have suffered. I pay tribute once again to Lyla’s family. This debate, the petition and the media reporting of this debate will all raise awareness, and I have no doubt that that will contribute to saving the life of some child somewhere in our nation. I look forward to hearing the Minister’s response on how she will increase clinician awareness and widen public awareness, improve research into screening and new treatments, improve early diagnosis, and roll out the best technologies and treatments to improve diabetic control for patients with diabetes.
The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)
It is a pleasure to serve under your chairmanship from the Dispatch Box, Sir Alec. I thank my hon. Friend the Member for North Ayrshire and Arran (Irene Campbell) for opening this important debate, following the petition related to funding for infants to receive type 1 diabetes testing and routine care. I am grateful to all hon. Members who have taken part and for all the heartfelt speeches that we have been privileged to hear.
I am not surprised at all that the petition received 120,000 signatures after it was started, following—as we know—the tragic death of two-year-old Lyla Story from diabetic ketoacidosis mere hours after seeing her GP. I was deeply affected when I heard that a child so young had been taken so cruelly by a condition as common and manageable as type 1 diabetes. I thank and pay enormous tribute to Lyla’s parents, John and Emma Story, who have campaigned so passionately and powerfully at a time of such unimaginable grief. It is truly inspiring, and we hope that it will help to ensure that no other families will suffer as they have. I am so sorry, and I offer Mr and Mrs Story my deepest sympathies. No child or their family should be let down in this way.
We have started to make improvements to raise awareness, and this debate forms a very important part of that. During World Diabetes Day in November 2025, NHS England made a big push to raise awareness of the four Ts, which, as we have heard today, are the main symptoms of type 1 diabetes: thirst, tiredness, thinning, and an increased need to go to the toilet. This work was channelled via social media and a cascade to clinical networks, as well as by updating the nhs.uk pages to make them clearer. A RightCare toolkit was also published by NHS England, which is designed to support integrated care systems to design, plan and deliver high-quality treatment and care for children with all types of diabetes.
Victoria Atkins (Louth and Horncastle) (Con)
I warmly welcome the Minister to her place. I should declare that I was diagnosed with type 1 diabetes at the age of three, so I cannot begin to imagine the pain that Mr and Mrs Story, and other affected families who are in the Public Gallery or watching this debate online, have felt—particularly my constituent Levi, who lost her beloved son Eli at the age of two after five misdiagnoses of viruses and infection. Will the Minister undertake to ensure that future guidance will be drafted to emphasise to clinicians that infections and viruses can be not only a symptom, but sometimes a trigger of type 1 diabetes, so that clinicians will have, we hope, the understanding to avoid the tragic losses that we have heard about today?
Mrs Hodgson
I thank the former Secretary of State for Health for her important intervention. I was not aware that she was type 1 diabetic herself, and the case of Levi that she mentioned is so pertinent to what we are discussing. Mr Story has been working with NICE, and that guidance is currently being updated. As the right hon. Member says, it is so important to get that information out there, so that all GPs are brought up to date and know that infections and viruses can be a trigger, so I thank her for that intervention.
The RightCare toolkit that is being brought forward also contains important information for clinicians in setting out what good quality diabetes care looks like for children and includes guidance on timely and accurate diagnosis. However, we recognise that more needs to be done, and that is why NHS England is working on how we can better support NHS staff to diagnose patients as quickly as possible and raise awareness of symptoms for parents and families.
Tom Gordon
The Minister is talking about how the toolkit will outline for GPs what good diabetes care looks like. That independent advocacy and scrutiny function often came from Healthwatch, which will be abolished in the changes to the NHS and rolled into DHSC. Can she outline how we will ensure scrutiny of services such as diabetes care, which have the patient voice at their heart?
Mrs Hodgson
If I may, I will write to the hon. Member on his important point, rather than giving a possibly unsatisfactory answer off the top of my head.
The NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record—EPR— systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can update the House that clinical leaders in NHS England are also working with digital diabetes education providers to develop a primary care healthcare professional education module.
While we are working on options to improve type 1 diabetes diagnosis, a requirement for a mandatory finger-prick test for those presenting with possible symptoms of type 1 diabetes is difficult to enact and could not be delivered quickly. I hear the point made by the hon. Member for South Northamptonshire (Sarah Bool) in her excellent speech—many others also made this point—about how all GP practices should have the necessary equipment and finger-prick testing kits, and several hon. Members raised the issue of NHS funding for point-of-contact testing kits. I can reassure them that there is good clinician access to those tests. What we need to do is ensure that their use is at the forefront of clinicians’ minds when the symptoms present, which is exactly what Mr and Mrs Story called for in their petition.
One Member raised the abolition of NHS England. I can reassure Members that, as part of that change process, policy functions will transfer into the Department as appropriate. Clinicians follow clinical guidelines set out by NICE, which are advisory and not mandatory. They are not mandatory because they are designed as evidence-based advice to inform rather than to replace clinical judgment, allowing for tailored care for individual patients. Guidelines cannot cover every unique patient scenario, and clinicians must therefore maintain responsibility for treatment decisions.
Tom Gordon
I thank the Minister for being so generous with her time. Before entering this place, I worked for Breakthrough T1D, and one thing that came up all too often was that clinicians did not feel that they had the funding to give people the treatment they needed. The Minister makes the point about giving them independence, but does she acknowledge that if they do not have the funding to do that, the guidance falls at the first hurdle?
Mrs Hodgson
That might be a fair point on some treatments more widely, but funding is not an issue for the finger-prick test—it is very affordable for the NHS, and I am told that funding is not the issue on the point we are debating today. I am pleased that NICE has been able to respond very quickly to Mr and Mrs Story. It has engaged with them in detail and listened to their concerns about how the guidance could be clearer.
I am very pleased that NICE has recently said it will update the guidance and guidelines on the diagnosis and management of type 1 and 2 diabetes in children, to raise the prominence of the risk of diabetic ketoacidosis in children with undiagnosed diabetes. I understand that the conversation Mr Story is having with NICE is ongoing, and that NICE is also considering an update to the adult guidance in due course. I know that Mr Story has raised further recommendations with NICE to improve that guidance. I am sure NICE will be considering it very carefully.
I would like again to put on record my admiration for the huge effort and determination of Mr Story in campaigning to raise awareness and advocating for improvements. The updating of NICE guidance is tangible proof of his efforts; his time has not been wasted.
I recognise that the immediate issue raised is point-of-care testing, but I should update the House in saying that, more broadly, we are also funding the delivery of research to develop and test novel approaches for diagnosing type 1 diabetes earlier and more accurately through the NIHR. That includes an investigation of the use of a new home test for type 1 diabetes in children and young people. Studies are also identifying ways to improve the diagnosis of type 1 and 2 diabetes based on genetics, making prediction more accessible and more effective.
We are also supporting the delivery of research into type 1 diabetes treatment, again through the NIHR. That includes supporting a new UK-wide type 1 diabetes cell therapy clinical trials network. The aim is to ensure all people with the condition gain access to the latest cutting-edge treatments as early as possible. The NIHR’s research delivery network is also supporting the delivery of a study that aims to identify infants at risk of developing type 1 diabetes, and to study new treatments with the aim of preventing the development of the condition.
In addition, following the publication of NICE’s guidance recommending the use of hybrid closed loop systems as a treatment option for type 1 diabetes in children, the NHS began a five-year roll-out of HCLs in 2024. For those who are not familiar with that technology, an HCL acts as an artificial pancreas that lets a person’s insulin pump talk to their continuous glucose monitor. I am sure that adults in particular with type 1 diabetes are very aware of HCLs, but the use of HCLs in children under 19 has now increased from 36% in 2023-24 to 70% in 2025-26. That is significant progress in making that life-changing technology available to more children and young people.
Returning to the issue of diagnosis, the NHS is exploring how IT can be better used to support GPs in making more accurate diagnoses. That includes how existing electronic patient record systems could be used more effectively to provide prompts for GPs to consider type 1 diabetes when particular symptoms are added. I can inform the House that clinical leaders in NHS England are working with digital providers of diabetes education to develop an education module for primary care healthcare professionals.
A few Members mentioned screening, so I would like to take this opportunity to set out the Government’s position. Although we know that screening for antibodies would sadly not have helped Lyla, screening tests may help to improve our ability to identify those who are most likely to develop type 1 diabetes in future. We are guided by the independent scientific advice of the UK National Screening Committee, as it is vital that screening programmes are evidence-based and evidence-led. The committee does not currently recommend screening for type 1 diabetes, due to a lack of evidence.
However, the committee received a submission, via its 2024 open-call process, to consider screening for autoimmune type 1 diabetes through blood testing. Once NICE has published its recommendation on the drug teplizumab, which is expected this year, the National Screening Committee will consider whether a fresh review of the evidence for type 1 diabetes screening should be undertaken.
In addition, NHS England is looking carefully to see what further improvements might be made to the red book and to support increased awareness for parents and families so that they can see what the symptoms of type 1 diabetes are. I know that was an important part of the petition.
In closing, I thank all those present for taking part in this very important debate, as well as our constituents—all 120,000 of them—who took the time to sign the petition and press us all on this very important matter. I hope that the work that is currently being taken forward across diagnosis and awareness shows the seriousness with which this issue is being taken.
I am pleased that John and Emma Story will be meeting the Secretary of State for Health tomorrow to discuss this further, along with their constituency MP, my right hon. Friend the Member for Kingston upon Hull North and Cottingham (Dame Diana Johnson), who is here for the debate. I am sure that will be a very emotional and powerful meeting for Mr and Mrs Story. I wish them well and, in closing, pay tribute to them again for everything they have done in Lyla’s name to try to ensure that no other family follows in their footsteps.
Irene Campbell
I thank the Minister for her response. The petition and the surrounding debate focus on a very important and sensitive area: the importance of timely diagnosis. I thank Mr John Story again for his tireless campaigning on Lyla’s law and for taking the time to meet me to tell his story. I hope, as he does, that no parent ever again has to go through what he and his wife Emma have gone through.
I thank my right hon. Friend the Member for Kingston upon Hull North and Cottingham (Dame Diana Johnson), who has supported the petitioners in her capacity as the local MP and will be attending tomorrow’s meeting with the Secretary of State. I also thank the Royal College of General Practitioners; Dr Rachel Besser, a consultant at the University of Oxford who is leading the T1 early research programme and undertaking work on screening for childhood type 1 diabetes; and Dr Parth Narendran, who leads the ELSA study at the University of Birmingham. Each of those experts kindly took the time to meet me and answer questions on this multifaceted clinical topic.
Finally, as ever, I thank the staff of the Petitions Committee for all their help in organising this debate and the related meetings.
Question put and agreed to.
Resolved,
That this House has considered e-petition 728677 relating to type 1 diabetes testing for infants.