Commons Sense

House of Commons · Westminster Hall

Rare Autoimmune Rheumatic Diseases

10 December 2024 · 4 other contributors · 10,677 words

Opened by Jim Shannon DUP Strangford

Responding minister: Not recorded

NHS

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

Read the full transcript on Parliament.uk

At a glance

Jim Shannon raised concerns about rare autoimmune rheumatic diseases in Westminster Hall. Response awaited from government.

Key points

  • Concerns raised about long diagnostic delays for rare autoimmune rheumatic diseases, with an average time to diagnose of two and a half years and 30% of patients waiting five years.
  • Issues with communication between care teams were highlighted, affecting patient care and causing delays.
  • Calls were made for the government to focus on rare diseases in the NHS 10-year plan, enhance IT for quicker diagnosis, and increase funding for specialized networks.

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.

Opened the debate

Jim Shannon DUP Strangford

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.

Other contributors (4)
  • 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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