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Congenital Hyperinsulinism
08 April 2025
Lead MP
Sarah Hall
Warrington South
Lab/Co-op
Responding Minister
Stephen Kinnock
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Word Count: 2920
Other Contributors: 3
At a Glance
Sarah Hall raised concerns about congenital hyperinsulinism in Westminster Hall. A government minister responded.
Key Requests to Government:
I ask for CHI to be added to the NHS website, an awareness campaign and resource pack creation, and equitable access to treatment, medication, and monitoring technology regardless of geography or condition type.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
CHI affects around 95 babies born in the UK each year, with over 2,000 people currently living with it. It causes dangerously low blood sugar levels and can lead to life-altering neurological complications. Families face emotional and financial challenges, including lack of medical information and support.
Ashley Dalton
Con
West Lancashire
The Minister of Health and Social Care acknowledged the challenges faced by individuals with rare diseases and their families in accessing reliable information and mental health support. He committed to working with officials and colleagues in the devolved Governments to maintain momentum on improving lives for those with rare diseases.
Graeme Downie
Lab
Dunfermline and Dollar
Contributes by raising concerns about access to Givinostat in Scotland for young boys diagnosed with Duchenne muscular dystrophy, seeking a meeting to discuss the issue.
Jim Shannon
DUP
Strangford
He commended the hon. Member for bringing forward the debate on CHI and mentioned early intervention and wider ability to prescribe medications like Ozempic to prevent type 2 diabetes.
Government Response
Stephen Kinnock
The Minister for Care
Government Response
Acknowledges the importance of the debate and expresses appreciation towards the families affected. The Minister highlights the Government's commitment to rare diseases by outlining measures such as rapid diagnosis, genetic testing advancements, and actions aimed at improving patient care coordination. Emphasises ongoing work on awareness, coordinated care, specialist access, and research support through various action plans and schemes.
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Assessment & feedback
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About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.