House of Commons · Westminster Hall
23 January 2025 · 5 other contributors · 8,564 words
Opened by Jim Shannon DUP Strangford
Responding minister: Karin Smyth
Summarised by AI from the official record, so it can contain mistakes.
Jim Shannon raised concerns about rare retinal disease in Westminster Hall. A government minister responded.
Key points
Key requests to Government
Supporting access to new innovations that can improve diagnosis, treatment, and care for rare retinal diseases should be a priority for the Government and their relevant agencies.
MPs spoke in turn to share their views and ask questions. Here's what each person said.
Opened the debate
Only 25,000 people across the UK suffer from the condition but it affects 25,000 people and families. The cost of IRDs in the UK is £523.3 million, including wellbeing costs of £196.1 million and total economic costs of £327.2 million.
The right hon. Member acknowledged the importance of eye health and highlighted his personal experience with a minor eye injury, emphasizing the potential life-changing impact of more serious conditions.
Thanked everyone who took part in the debate, highlighted personal stories of individuals affected by rare retinal diseases, and acknowledged the contributions of other MPs and the Minister.
Explored the devastating impact on families when a mother-to-be is diagnosed with Stargardt disease, highlighting the need for regulatory bodies such as NICE to collaborate with pharmaceutical and medical companies. The hon. Gentleman shared insights about eye trauma and gardening risks, supporting the debate's focus on raising awareness for rare eye diseases and their societal impacts. Discussed the challenges in making new gene therapies affordable for patients.
Discussed his own experience of being diagnosed with Stargardt disease 45 years ago and the impact on employment opportunities, noting that 75% of people registered blind are unemployed. Brought a measured and knowledgeable approach to the debate on rare diseases.
Acknowledged the impact of rare diseases on patients and families, highlighted government commitments to improving diagnosis and care through the UK rare diseases framework and annual action plan.
Government Response
Karin SmythThe Minister for Secondary Care
Thanked Jim Shannon for securing the debate and acknowledged the expertise of other Members. Mentioned that Andrew Gwynne will write to hon. Members about any outstanding issues. Discussed the Government's commitment to tackling rare inherited retinal diseases, highlighted NICE’s approach to evaluating treatments, mentioned progress in genomic diagnosis and research funding, and outlined measures to improve early diagnosis and care through digital connectivity.