💙 Congenital Hyperinsulinism

• Sarah Hall highlighted the challenges faced by families affected by congenital hyperinsulinism (CHI), focusing on her constituents Joanne and Gavin and their daughter Ibbie. CHI causes the body to produce excessive insulin, leading to dangerously low blood sugar levels, which can result in serious health issues if not managed properly.

• Impact on families: Sarah explained how CHI affects every aspect of family life, including emotional health, finances, and work. Joanne and Gavin, both teachers, had to stop working to care for Ibbie, illustrating the severe impact on employment and family dynamics.

• Healthcare challenges: The debate revealed a lack of awareness and support within the healthcare system for CHI. Families often feel isolated and must educate healthcare providers on managing the condition. There is no routine newborn screening for CHI, and diagnosis often comes by chance or after a severe health episode.

• Geographical disparities: Access to treatment and care varies by location, creating a “postcode lottery” where families outside major medical centers struggle more to get the necessary care and medications.

• Sarah’s asks: She made several requests to improve the situation for CHI families, including adding CHI to the NHS website, creating an information campaign and resource pack, ensuring equitable access to treatment regardless of geography, improving support for benefits processes, addressing medication access and supply, funding research into less invasive treatments, and arranging a meeting for affected families with the Minister.

• Minister Stephen Kinnock’s response: The Minister acknowledged the challenges and praised the families’ resilience. He outlined the government’s commitment to improving the lives of those with rare diseases through the UK rare diseases framework, which focuses on faster diagnosis, increased awareness, better care coordination, and improved access to specialist services.

• Future actions: The Minister mentioned the fourth rare diseases action plan, which aims to enhance care coordination, support families needing multiple specialists, and promote research. He also highlighted initiatives like the generation study for early detection of rare diseases and efforts to improve mental health support for those affected by rare conditions.

• Commitment to ongoing support: Despite the framework’s impending conclusion, the Minister reaffirmed the government’s dedication to continuing improvements for rare disease patients, with further discussions involving officials and devolved governments.

The parliamentary session on congenital hyperinsulinism displayed minimal disagreement among the participants. Sarah Hall, the Member introducing the motion, presented a detailed account of the challenges faced by families affected by the condition, including her specific asks for improvements in healthcare and support. The Minister for Care, Stephen Kinnock, responded positively, expressing appreciation for the debate and acknowledging the struggles faced by affected families. He further committed to passing on the seven specific asks to the relevant minister and indicated a willingness to follow up, which suggests a cooperative rather than contentious atmosphere.

Jim Shannon and Graeme Downie, who intervened, did so to highlight similar issues in their constituencies, yet they did so in a supportive manner, asking for additional considerations rather than challenging the motion. Their comments were aligned with the main discussion and did not introduce any significant disagreement.

Throughout the session, there was a notable absence of confrontation or opposing viewpoints. All participants appeared to be in agreement about the need for better support, awareness, and resources for congenital hyperinsulinism and were supportive of the initiatives proposed by Sarah Hall. The Minister’s responses were constructive and focused on outlining existing and planned efforts to address the issues raised.

Given the session’s unanimous support for improving the situation for families affected by congenital hyperinsulinism, and the lack of any evident dissent or conflict, the rating for disagreement displayed in the session is set at 1.