Congenital Hyperinsulinism

Jim Shannon Excerpts

Tuesday 8th April 2025 Westminster Hall

[Sarah Hall (Warrington South) (Lab/Co-op)]

I beg to move,

That this House has considered the impact of congenital hyperinsulinism on patients and their families.

It is a pleasure to serve under your chairship, Ms Butler. I dedicate my remarks to my constituents Joanne and Gavin and their daughter Ibbie, who is two years old. Ibbie lives with a rare and serious condition called congenital hyperinsulinism. This is a term many will not have come across, but one that has come to define every part of life for the families that it touches. CHI affects around 95 babies born in the UK each year, with just over 2,000 people currently living with the condition. It causes the body to produce too much insulin, leading to dangerously low blood sugar levels. Left undiagnosed or unmanaged, the consequences can be life altering, increasing the risk of long-term neurological complications and impaired neurodevelopment.

The clinical challenges are complex and the emotional toll on families enormous. When I recently met Ibbie at one of my constituency surgeries, I met a bright, smiling two-year-old, full of life, but behind that smile is the reality her parents face every single day of managing risk, navigating a system that too often does not understand their daughter’s condition, and fighting for basic support. While the challenges Ibbie faces in living her life are many, her parents Gavin and Joanne are doing everything they can to help navigate them.

Joanne and Gavin are both teachers—a maths teacher and an English teacher—but they cannot work. Ibbie’s needs mean they must always be close by. They must always have access to a car, and theirs cannot be a one-car household. Every family decision, no matter how small, is shaped by proximity to emergency care. Their other children have also been drawn into the experience. They have learned how to spot signs of danger and been taught how to perform heel pricks. The whole family has stepped up to help keep their baby sister safe and well. It is clear that congenital hyperinsulinism is not just a medical diagnosis; it is a whole-life diagnosis.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Lady for bringing this forward. I declare an interest as a type 2 diabetic—a condition that is not as bad, I have to say, but still has to be managed. Northern Ireland has a high prevalence of diabetes, with almost 115,000 people living with the condition, and the number is increasing annually. Does the hon. Lady agree that early intervention for those who are pre-diabetic is essential and that consideration must be given to widening the ability for Ozempic, Mounjaro and other glucagon-like peptide-1 drugs to be prescribed more widely to help in the prevention of full-blown type 2 diabetes? That needs to be done not just in my constituency or the hon. Lady’s but across this great United Kingdom of Great Britain and Northern Ireland.

[Sarah Hall]

The hon. Gentleman makes an important point.

As I was saying, it is clear that congenital hyperinsulinism is not just a medical diagnosis; it is a whole-life diagnosis. It affects emotional health, finances, education, work, family life and more. Far too often, families say they feel invisible, left to navigate this journey alone. Ibbie’s family have had to personally teach staff how to carry out a heel prick and spot signs that she might be unwell. What should have been a joyful milestone becomes a period of anxiety and worry.

Even basic medical information is hard to access. After Ibbie was diagnosed, her parents were not given guidance on how to manage the condition—no education, no tools, no support. Even their GP and health visitor were unfamiliar with CHI. They had to travel from Warrington to Alder Hey in Liverpool just to ask whether Ibbie could take Calpol. Disability living allowance forms have been difficult to complete. There is no easily accessible support, and little knowledge of the condition. All of this compounds what is already an extremely worrying situation for families, and results in many feeling isolated and lonely.

That kind of gap in care is not just inconvenient: it is dangerous. It speaks to a wider failure to provide families with the knowledge and resources that they need. I thank the Children’s Hyperinsulinism Charity for helping to bring these issues to the fore. It is a small charity, run by dedicated parents who are doing the work that should be supported—and, in many cases, delivered—by public bodies. We know that the financial burden on the NHS is considerable. A 2018 study found that congenital hyperinsulinism costs the NHS over £3.4 million a year. That is why early diagnosis, consistent care and good support systems are not just good practice; they are essential and cost-effective. Yet, across the country, parents tell us the same story: late diagnosis, poor awareness, postcode lotteries in care, and a lack of access to vital medication and monitoring technology.

Gavin and Joanne had to fight to get a continuous glucose monitor for Ibbie, a tool that allows real-time blood sugar readings and could prevent neurological damage. They succeeded, but the funding lasts for only a year. After that, they are back to square one. While some hospitals such as Alder Hey, Royal Manchester Children’s hospital and Great Ormond Street offer specialised support, families who live outside those areas are left with fewer options. Geography should not determine the quality of healthcare that a child receives. As it stands, congenital hyperinsulinism is not even listed on the NHS website. That is a small but symbolic gap, and it makes a difficult diagnosis even more isolating.

There are misconceptions about the condition; comments from health professionals to my constituent when they are told about Ibbie suffering from hyperinsulinism include, “Is that like diabetes?” Improving clinical understanding of CHI is essential. At present, no routine test for the condition is carried out in newborns. The standard heel-prick screening, familiar to most parents, does not check for hyperinsulinism. For families like Gavin and Joanne’s, early diagnosis comes not through systemic checks but chance; their daughter Ibbie was seriously unwell at birth, which prompted further testing and led to the diagnosis. Others are not so fortunate. Many children with the condition show few symptoms initially, and diagnosis only follows a serious health episode. In too many cases, it is not clinical vigilance that identifies the issue but emergency.

That unpredictability is compounded by geography. Families describe a postcode lottery in access to timely treatment and care. In Ibbie’s case, even medication is not easily obtained in Warrington. Her parents must travel to Alder Hey, where she is able to receive the specific brand that she requires. For a family already managing a complex health condition, that adds further pressure and strain.

I have some specific asks, drawn directly from the lived experiences of families in my constituency and beyond. The first is to ensure that congenital hyperinsulinism is added to the NHS website as a priority, to raise awareness with healthcare professionals, caregivers and the general public; the second is to work with families, charities and health professionals to create an information campaign and resource pack for parents and other frontline health professionals; and the third is to guarantee equitable access to treatment, medication and monitoring technology, including CGMs, regardless of geography or condition type.

My fourth ask is to provide more consistent support with benefits processes, such as DLA, where families currently face a wall of bureaucracy and misunderstanding; my fifth ask is to address disparities in access to key medications, such as diazoxide, and work to prevent supply shortages; and my sixth is to fund ongoing research into treatments to reduce the need for invasive procedures such as pancreatectomies. Finally, will the Minister meet the families affected by hyperinsulinism, including Gavin and Joanne, to hear directly from them and explore how the Government can close the health and care gap?

In closing, let me return to the heart of this debate: not just the medical condition, but the families whose lives are shaped by it—people like Gavin and Joanne, and their daughter Ibbie, whose story reminds us that behind the terminology and statistics are children who deserve the chance to thrive, and parents who deserve to feel supported and not abandoned. We must not accept a healthcare system where someone’s postcode determines the standard of care their child receives, nor should we tolerate a lack of basic awareness among professionals about a condition with such serious implications. When families are educating their GPs and nursery staff on how to manage their child’s condition, something is wrong.

Every child deserves the same level of care, and every parent deserves the reassurance that the system is there to support them. Families like Ibbie’s are not asking for the world. They are asking for recognition, understanding and a system that helps them to do what they already do so well: love and care for their children. We owe them that, and more.