A turning point in the fight for better brain aneurysm care

2 days ago
4 min read

Updated: 18 hours ago

Thank you to all who signed our open letter – it’s now in government hands.

Our Patient and Family Panel at the report launch at The House of Commons

Our open letter calling for urgent improvements to brain aneurysm pathways is now closed, with more than 240 signatures from patients, clinicians, charities and major hospital trusts — each one a powerful expression of lived experience, professional insight, and collective determination.

These signatures matter because they transform our calls for change into undeniable evidence of national demand: they show policymakers that hereditary aneurysms affect thousands, that the community is watching, and that the current system is no longer acceptable.

The letter has now been delivered through multiple routes — directly to the Secretary of State for Health and Social Care, via supporting MPs, and into the hands of key decision‑makers across DHSC and NHS England — ensuring our community’s voice is heard clearly, loudly, and unavoidably by those with the power to act.

Why we’re fighting

Around 250,000 people in the UK are living with an inherited risk of brain aneurysm. Each year, more than 5,000 rupture - causing 1,700 deaths and leaving 2,200 survivors with life-changing disabilities. An estimated 650 of those ruptures could be prevented through timely screening and intervention.

Those numbers alone should demand attention. But our report goes deeper than statistics. Drawing on qualitative research, patient and clinician surveys, and an independent policy analysis commissioned from Costello Medical, it reveals a system that is, in the words of one of our community members, "inconsistent, inequitable, and reactive."

“In 2022, I founded HBA Support for a deeply personal reason: my family had already lived through two generations of loss to hereditary brain aneurysms. When I was diagnosed myself, it became painfully clear that what families need simply doesn’t exist.

And from our research over the last two years, that’s what you’ve told us too: Support is inconsistent. Pathways are unclear. Psychological and genetic care is almost never offered. Too many people find themselves navigating this terrifying journey alone.

Thank you to those who signed our letter, we look forward to the opportunity to engage about the findings of our report which for the first time gives our community a voice.”

Rebecca Middleton, Founder, HBA Support

What we're asking for

Our nine clear, evidence-based recommendations set out a roadmap for a system that genuinely works for our community. We are asking for:

National cascade screening guidelines - clear, evidence-based, and applied consistently, rather than varying by hospital and postcode.
Hereditary brain aneurysms to be formally recognised as a distinct condition, which would unlock the care pathways, research investment, and genetic frameworks that families urgently need.
Brain aneurysm care to be included in NHS long-term planning - not left to fall between cardiovascular and neurological services, visible to neither.
Better data, so that our community is counted.
GP education, so that families are not dismissed when they raise a family history.
Genetic counselling and psychological support to be built into care pathways from the beginning.
For co-produced patient information that enables informed decision-making.
Partnership with patient-led organisations.
Every subarachnoid haemorrhage survivor to receive the rehabilitation they are already entitled to under NICE guidelines - because far too many currently do not.

Our impact so far

In February, we launched our report at the House of Commons. More than 60 guests attended - from neurosurgeons, interventional neuroradiologists, neurologists, neuro‑nurses, MPs, charity leaders, partners, funders, patients, and families. Proof of the powerful appetite for change.

The momentum that followed has been extraordinary.

Clinical leaders backed the call for change

Senior clinicians described the event as vital, insightful, and inspiring. Their support strengthens our ability to push for national improvements.

Our work reached new platforms

We were invited to present at two national conferences, with more expected, and we remain hopeful about speaking at more.

Hospitals requested our expertise

Two major neurosurgery centres asked us to help co‑develop new patient information materials — a meaningful way to improve communication and care right now.

Strong media and public engagement

Coverage in outlets such as Neuro News International, Rare Revolution Magazine, and regional titles helped our message reach national and international audiences. Online engagement surged, with hundreds visiting our website to read the report.

Our recommendations are being discussed within NHS long‑term planning and national research agendas. And Jim Shannon MP has offered to raise parliamentary questions on our behalf.

What’s next?

We are waiting to hear from the Secretary of State's office. We will share every development with this community as soon as we have it.

In the meantime, the report remains available to read and download. Please share it - with your GP, your consultant, your MP, anyone with the power to turn these recommendations into reality.

You can continue to help us by:

Follow us on Facebook, Instagram or LinkedIn and like, share and comment on our posts to spread the word.
Join in - patient voices are powerful in shaping policy and service design so please join in and share your story by emailing us at support@hbasupport.org
Fundraise for us!