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Patients with Rare Diseases — [Mr Virendra Sharma in the Chair]
09 March 2023
Lead MP
Jim Shannon
Strangford
DUP
Responding Minister
Helen Whately
Tags
Taxation
Word Count: 10763
Other Contributors: 3
At a Glance
Jim Shannon raised concerns about patients with rare diseases — [mr virendra sharma in the chair] in Westminster Hall. A government minister responded.
Key Requests to Government:
Shannon asks the government to provide more funding for rare disease research and support the development of effective treatment pathways across the UK. He also requests that discussions take place between the devolved Administrations to collaborate on addressing rare diseases.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
Mr. Jim Shannon is concerned about the challenges faced by individuals and families dealing with rare diseases, such as Miller Fisher syndrome and pemphigus. He highlights that approximately 3.5 million people in the UK will be affected by a rare disease at some point, yet 95% of rare diseases lack approved treatments. Shannon raises issues like diagnostic delays, the need for better awareness among healthcare professionals, and inadequate funding for research and care.
Deidre Brock
SNP
Glasgow North West
Rare diseases, though individually rare, collectively affect over 412,000 people in Scotland. Deidre Brock highlighted the challenges faced by those with rare conditions, such as long wait times for diagnosis and difficulties accessing support services. She also emphasized the importance of longer-term funding for research to avoid leaving researchers unable to progress their work due to short-term funding constraints.
Feryal Clark
Lab
Enfield North
Feryal Clark welcomed the Government's 2023 rare diseases action plan but raised questions about funding and implementation, particularly regarding newborn screening with whole genomic sequencing for up to 200 rare genetic conditions. She also highlighted workforce challenges and called for more information on how digital educational resources would be delivered to healthcare professionals.
Liz Twist
Lab
Blaydon and Consett
Ms Liz Twist highlighted the challenges faced by patients with rare diseases, including long diagnostic wait times, difficulties in accessing treatment due to lack of awareness among healthcare professionals, and a need for newborn screening expansion. She also discussed the importance of care co-ordination, mental health support, and research funding for undiagnosed conditions, citing specific cases such as spinal muscular atrophy (SMA) and sickle cell anaemia. Expressed concern that the newborn screening programme may not be rigorous enough compared to other countries, highlighting SMA as an example of a condition where testing progress is slow. Discussed challenges faced by people with rare diseases, including long wait times for diagnoses and difficulties in accessing treatments. Highlighted the importance of research screening and access to the innovative medicines fund.
Government Response
Helen Whately
Government Response
Acknowledged the importance of rare disease issues raised by MPs, including the need for faster diagnosis and better care coordination. Noted progress made on diagnosing rare diseases through Genomics England's clinical research interface which helped identify over 1,000 new complex diagnoses in 2022. Emphasised continued efforts to improve awareness among healthcare professionals, co-ordination of care, and access to treatments through initiatives like the innovative medicines fund. Mentioned ongoing work to reduce health inequalities faced by people with rare diseases and committed to further steps for easier participation in research. Announced £12 million funding for the UK rare disease research platform and a £790 million investment from the National Institute for Health and Care Research.
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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.