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Rare Autoimmune Rheumatic Diseases
10 December 2024
Lead MP
Jim Shannon
Strangford
DUP
Responding Minister
Not recorded
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Word Count: 10677
Other Contributors: 4
At a Glance
Jim Shannon raised concerns about rare autoimmune rheumatic diseases in Westminster Hall. Response awaited from government.
Key Requests to Government:
I am calling on the Minister to ensure that rare diseases are a focus in the NHS 10-year plan, continue work beyond 2026, develop a standard of care, enhance IT capacity for quicker diagnosis, improve clinician confidence in diagnosing these conditions, and increase funding for specialized networks. Additionally, I ask about improving access to specialist nurses who play a crucial role in supporting patients with rare autoimmune rheumatic diseases. He encouraged the government to prioritize research and development for disease modification drugs and to ensure timely and accurate diagnosis through digital improvements such as GeNotes. Mr Shannon also welcomed the Minister's commitment to engage with four nations for a collective approach towards the rare diseases framework, aiming for a solution by 2026.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
I am concerned about the long diagnostic delays and inconsistent access to specialist care for individuals with rare autoimmune rheumatic diseases. The average time to diagnose from symptom onset is two and a half years, with 30% of patients waiting five years. This leads to significant suffering and uncertainty for patients. Additionally, there are issues with communication between care teams, as highlighted by the case of Zoi who received delayed correspondence about an appointment. Mr Jim Shannon expressed appreciation for the contributions from fellow Members and highlighted the impact of rare autoimmune rheumatic diseases on families. He mentioned that those affected by these conditions often struggle to work due to their severity, emphasizing the need for improved awareness and training.
Alison Bennett
Lib Dem
Mid Sussex
The hon. Member raised the case of her constituent, Zoi, living with granulomatosis with polyangiitis vasculitis and highlighted the importance of improving care for people with rare autoimmune rheumatic diseases. More than 160,000 people in the UK live with rare autoimmune rheumatic diseases. Alison Bennett shared her constituent Carrie's experience of early diagnosis and treatment which made a difference compared to her mother's years of misdiagnosis and poor care. She highlighted the postcode lottery in quality of care and advocated for a more coordinated multidisciplinary approach.
Gregory Campbell
DUP
East Londonderry
He congratulates the hon. Friend on securing the debate and agrees that raising awareness among health professionals is crucial for people affected by rare diseases, given the small number of individuals impacted.
Luke Evans
Con
Hinckley and Bosworth
He highlighted the difficulty in diagnosing rare autoimmune rheumatic diseases due to overlapping symptoms with other conditions. Evans mentioned the importance of breaking down these diseases into distinct groups for better diagnosis and care. He also discussed the UK rare disease framework, its priorities, and the need for continued funding and research. He raised questions about expanding genetic research and increasing workforce capacity in CDCs. Questions the Minister about the timescale for reviewing the workforce plan, expressing concern that healthcare modernisation can outpace reviews.
Peter Dowd
Lab
Bootle
Mr Dowd highlighted the importance of addressing rare autoimmune rheumatic diseases within the broader context of rare diseases, which affect 3.5 million people in the UK. He noted that 75% of rare diseases impact children and more than 30% result in death before age five. Mr Dowd emphasised the need for better co-ordination of care and access to specialist treatment, acknowledging the efforts of RAIRDA (Rare Autoimmune Rheumatic Disease Alliance) in setting quality standards.
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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.