Help us end the neglect of hereditary brain aneurysms and transform care by signing our open letter

Tuesday 10th February 2026

Rt Hon Wes Streeting MP
Secretary of State for Health and Social Care

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Dear Secretary of State,

Re: Urgent Action Required to Address Inequities in Brain Aneurysm Care

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We are writing to urge the Government to take immediate action to address the fragmented and inequitable care pathways faced by families living with hereditary brain aneurysm risk across the UK. For too many families, the experience is one of uncertainty, fear, and self-advocacy in the absence of a coordinated national approach.

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An estimated 250,000 people in the UK live with inherited risk. Evidence suggests that around 650 ruptures could be prevented every year through early detection and timely intervention. Yet families face a postcode lottery of care: no national screening guidelines, inconsistent access to genetic counselling, and limited psychosocial support. The system treats each case as an isolated event rather than a recognised inherited condition requiring structured, proactive management.

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The cost of inaction is profound. In 2005, the economic burden of aneurysm-related subarachnoid haemorrhage was estimated at £510 million annually, a figure Bank of England inflation estimates puts at around £900 million today. Each rupture results in emergency intervention, potential long-term disability, and devastating impact on families.

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Prevention is not only lifesaving but also cost-saving and aligns directly with the Government's strategic commitments to early diagnosis, prevention, and reducing health inequalities, within its 10 Year Health Plan.

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This letter is co-signed by leaders and representatives from across the clinical, research and patient communities. Together we recognise the urgent action required to address the inequities in brain aneurysm care.

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We therefore call on the Government to consider and work with HBA Support, and interested and invested stakeholders and patients, on the following recommendations:

1. Establish national guidelines and policy framework: Develop evidence-based screening and care guidelines, formally recognise hereditary brain aneurysms as a genetic condition, and integrate into NHS long-term planning with strategic leadership.

2. Build the infrastructure for equitable care: Improve national data collection, invest in GP education for early recognition and referral, and expand routine access to genetic counselling and psychosocial support.

3. Empower patients and families: Co-produce clear information resources, ensure support at every stage, and establish sustained partnerships with patient-led organisations like HBA Support.

4. Ensure comprehensive post-rupture care: Guarantee all subarachnoid haemorrhage survivors receive specialist rehabilitation and long-term follow-up in line with existing stroke pathways.

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A shift toward prevention and empowerment is urgently needed.

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A standardised national pathway integrating clear clinical guidance, screening, follow-up care and psychosocial support would transform outcomes for affected families. We are happy to discuss how these recommendations could be considered within the cardiovascular disease (CVD) Modern Services Framework. By closing these gaps, the healthcare system can shift from reactive crisis response to proactive prevention – saving lives, reducing long-term costs, and transforming generational loss into generational hope.

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Families should not have to fight to be seen, heard or supported. We urge you to champion this cause and ensure that brain aneurysms receive the national policy attention, clinical coordination and investment they urgently deserve and have been denied so far in policy.

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On behalf of our community and our signatories below, we would welcome the opportunity to meet with you or your officials to discuss these recommendations and support the development of a national approach.

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Signed in support of HBA Support

Yours sincerely,