- 6:00 pm
- 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.
- 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.
- 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.
- 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?
- 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.
- 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?
- 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.
- 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?
- 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.
- 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.
- 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.
- 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?
- 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—
- 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.
- 6:14 pm
- 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.