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Dawn Butler (in the Chair)
I will call Sarah Hall to move the motion and then call the Minister to respond. I remind other Members that they may make a speech only with prior permission from the Member in charge of the debate and the Minister. As is the convention for 30-minute debates, there will not be an opportunity for the Member in charge to wind up.
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.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairship, Ms Butler. I thank my hon. Friend the Member for Warrington South (Sarah Hall) for securing this important debate, which really is a tribute to her and to her constituents, Ibbie and her family, who have clearly been through a very challenging time but have shown tremendous strength, bravery, love and compassion. I would be grateful to my hon. Friend if she could pass on our very best wishes to the family and thank them for helping us to look at this issue.
The birth of a new member of the family should be a moment of excitement, celebration and, indeed, exhaustion. Realising that their baby might have a serious illness should be the last thing on any new parent’s mind. That is why getting help quickly is so important, as is ongoing support. Around 95 children are born with congenital hyperinsulinism in the UK each year. Although that means it is a rare disease, it should not be overlooked.
The Government are committed to improving the lives of people living with rare diseases. On that point, I have carefully noted the seven asks that my hon. Friend the Member for Warrington South listed, including her request to meet the relevant Minister. I should say that the lead Minister in this area is our colleague the Minister of State for Health, who is not present today—I am standing in for her. My officials will pass on to her all my hon. Friend’s asks, including the one for a meeting. I am sure that the Minister of State for Health will be happy to follow up on those points.
Rare diseases like congenital hyperinsulinism are individually rare but collectively common. There are more than 7,000 rare conditions, meaning that one in 17 people will be affected by one over their lifetimes. Each condition will have different symptoms and experiences, and every person is unique. Despite that, across all rare diseases there are shared challenges, which have shaped the approach of the UK rare diseases framework and England’s annual action plans. The national conversation on rare diseases in 2019 identified four priorities for the framework: ensuring that patients get the right diagnosis faster; increasing awareness of rare diseases among healthcare professionals; the better co-ordination of care; and improving access to specialist care, treatment and drugs.
Graeme Downie (Dunfermline and Dollar) (Lab)
I congratulate my hon. Friend the Member for Warrington South (Sarah Hall) on securing this important debate. I had not intended to intervene, but my hon. Friend raised issues similar to those in my constituency in respect of young boys diagnosed with Duchenne muscular dystrophy, who are having difficulty accessing the drug Givinostat in Scotland. I am aware that the Minister might not be able to respond immediately, but will he meet me to discuss access to that drug in Scotland, and how we can help other young people affected by a rare disease?
Stephen Kinnock
I am happy to look into that. Healthcare in Scotland is devolved, but all the nations of the United Kingdom can learn a huge amount from each other—nobody has a monopoly on good ideas—and it would be excellent to find out a little more about the issues my hon. Friend referred to.
The four framework priorities form the “what” of what we do, and are supported by underpinning themes—the “how” of how we get there. The themes include keeping the patient voice at the heart of all we do. I pay tribute to advocacy groups such as the Children’s Hyperinsulinism Charity and Genetic Alliance UK for their excellent work supporting families and continuing to raise important issues that help to make things better for people with congenital hyperinsulinism.
In England, we published the fourth rare diseases action plan on 28 February, which is otherwise known as Rare Disease Day. The plan provides updates on the progress made since the beginning of the framework in 2021. I am pleased to say that it also includes three new actions for the future, which aim to improve the co-ordination of care, make things easier for families who need to visit multiple specialists, and improve the environment for research on rare diseases in the UK.
Receiving the right diagnosis as soon as possible is vital, particularly for conditions that present in infants and young children, such as congenital hyperinsulinism. The Exeter Genomics Laboratory is the national provider of hyperinsulinism genetic testing and the research centre of excellence. That lab, the paediatric endocrinologist community, and highly specialised service units have a close relationship, so patients can be diagnosed rapidly and managed effectively via a multidisciplinary team framework.
A diagnosis means that the right treatment can be given early, ultimately helping to improve health outcomes. Advances in genomics represent a huge opportunity to find children with rare diseases as soon as possible. The generation study, which commenced last year, is run by Genomics England and is piloting the use of whole-genome sequencing in newborns to identify more than 200 rare conditions, including congenital hyperinsulinism. The study is now under way and recruiting across 18 NHS trusts. It aims to screen 100,000 babies.
Diagnosis is only the start of managing a rare disease, and I know that there is still unmet need. Too many people continue to struggle with challenges, including lack of access to reliable information or specialist treatment. Only 5% of rare conditions have an approved and effective treatment—that is a shocking statistic. To improve the situation, we have made pioneering research another underpinning theme of the UK rare diseases framework. The highly specialised technologies programme of the National Institute for Health and Care Excellence evaluates technologies for very rare, and often very severe, diseases. We are working with the regulatory system to look at access schemes such as the early access to medicines scheme, the innovative licensing and access pathway, the innovative devices access pathway and the innovative medicines fund. Those schemes are all designed to support the earlier availability of innovative treatments to patients who need them, and they must also work for rare diseases.
Many people struggle to access reliable information on rare diseases. With over 7,000 different rare diseases, which often need highly specialised input, the NHS website is not always the best place for such information—although I note the point that my hon. Friend the Member for Warrington South made about the website, and we will look into that. Patient organisations and charities play an important role in creating high-quality information on rare conditions. Therefore, in this year’s action plan we have set out the steps we are taking to support organisations to get the information they produce accredited under the Patient Information Forum’s trusted information creator—or PIF TICK—scheme, so that families will know they can rely on trustworthy information.
Living with or caring for someone with a rare disease can be mentally tough. We know that people living with rare conditions, and their families and carers, often struggle to access mental health and psychological support. This is not right. Alongside the wider steps that we are taking to improve mental health access, the NHS genomics education programme has this year published new resources on rare diseases and mental health, aimed at healthcare professionals. It has also developed a communications tool to help healthcare professionals with sensitive conversations, to ensure that patients and families feel supported throughout the diagnosis of a rare condition.
I close by again thanking my hon. Friend the Member for Warrington South, as well as those affected by congenital hyperinsulinism and organisations that advocate on their behalf. Although the five-year UK rare diseases framework will come to a close at the start of next year, we remain committed to improving the lives of those with rare diseases. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton) will work with officials and colleagues in the devolved Governments to chart a course forward and maintain the momentum we have built.
Question put and agreed to.