The team at HBA Support has submitted its urgent response to the NHS 10-Year Health Plan consultation, advocating for more research and crucial changes to improve and personalise care for families affected by hereditary brain aneurysms. For our community, this consultation is an important opportunity to raise awareness of the gaps in care and drive much-needed change.
The NHS 10-Year Health Plan is a government-led initiative aiming to shape the future of healthcare. It focuses on making services more preventative, accessible, and efficient. By inviting input from organisations like ours, as well as the wider public, the plan seeks to ensure that the needs of all communities are addressed.
Rebecca Middleton, Founder of HBA Support, explains: “We welcome the opportunity to share our views on how the next ten years in the NHS could better screen, support, and treat our community. Through our research and data analysis, we have identified urgent care and screening gaps for brain aneurysm patients. We call on the NHS to reflect on these findings and implement strategic measures to prevent harm and save lives. It’s time to recognise the value of patient voices in shaping a healthcare system that works for all.”
What This Means for Families Like Ours
As many of you know from personal experience, hereditary brain aneurysms bring unique challenges. Families face generational risks, yet the NHS currently provides no tailored screening pathways, no access to genetic counselling, and no consistent treatment guidelines. This leaves many families struggling to advocate for themselves in a fragmented system.
Key Points from Our Response
In our 12-page submission, we called on the NHS to prioritise:
Tailored Screening Pathways: Families with hereditary aneurysms deserve equitable access to screening programmes, just as other genetic conditions such as familial aortic aneurysms currently receive.
Investment in Research: Supporting studies like ROAR and ROAR-DNA is critical to uncovering the genetic causes of brain aneurysms and will help unlock potential new treatments.
Workforce Support: Neuro waiting lists are some of the longest in the NHS, neuro specialist staff are stretched and there is a critical problem in delays to reports, leading to worrying waits for patients. This issue urgently needs to be addressed to ensure care for all elective and emergency neuro patients today and supported with a strategic, long-term plan to support the new generation of neuro specialists.
Access to Genetic Counselling: This essential service helps families understand their risks and make informed decisions but is currently unavailable for most hereditary brain aneurysm patients.
Public Awareness and GP Training: Our condition is not counted by the NHS data systems and unvalidated through health policy. We want to see this changed. We also know that many families report delays and misdiagnoses due to a lack of GP awareness about the hereditary pattern of brain aneurysms. Better training can close this gap. We stand ready to support.
Why This Matters
This consultation gives us, as a community, the opportunity to influence the future of healthcare. Hereditary brain aneurysms have been overlooked for too long, leaving families without the support they deserve. By highlighting these issues in the NHS Ten-Year Health Plan, we can work towards a system that recognises and addresses the unique challenges faced by families affected by this condition.
Together, we can push for the changes needed to save lives and ensure that no family feels forgotten. We will keep you updated as the consultation progresses and as we continue to fight for better recognition and care for hereditary brain aneurysms. Thank you for standing with us!
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