Commons Sense

House of Commons · Westminster Hall

Congenital Hyperinsulinism

08 April 2025 · 3 other contributors · 2,920 words

Opened by Sarah Hall Labour (Co-op) Warrington South

Responding minister: Stephen Kinnock

NHS

Summarised by AI from the official record, so it can contain mistakes.

Read the full transcript on Parliament.uk

At a glance

Sarah Hall raised concerns about congenital hyperinsulinism in Westminster Hall. A government minister responded.

Key points

  • CHI affects about 95 babies born in the UK each year, with over 2,000 people currently living with the condition.
  • Families affected by CHI face emotional and financial challenges due to a lack of medical information and support.
  • The Minister acknowledges the debate's importance and outlines government measures for rare diseases, including rapid diagnosis and genetic testing advancements.

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.

Opened the debate

Sarah Hall Labour (Co-op) Warrington South

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.

Other contributors (3)
  • 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

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.

▸ Assessment & feedback
Summary accuracy