“I didn’t know what support was out there”: What the UK’s largest neurological survey reveals about life with a brain aneurysm
- HBA Support
- 14 minutes ago
- 4 min read
Earlier this year, over 10,000 people shared their experiences of living with a neurological condition through the My Neuro Survey 2025, run by the Neurological Alliance - the Neurological Alliance is a coalition of more than 100 organisations working together to improve outcomes for the 1 in 6 people in the UK living with a neurological condition.
This included responses from people with brain aneurysms — offering valuable insight into what life looks like through a brain aneurysm diagnosis, rupture, and recovery.
At HBA Support, we welcome these findings as an important step toward better understanding the real-world impact of brain aneurysms through listening to patients’ lived experience.
We’re using them to strengthen our ongoing work with the NHS, researchers and policymakers: advocating for earlier diagnosis, more consistent follow-up care, better support after rupture, and greater involvement of patients and families in shaping the future of care.
What the data shows
People don’t feel involved in their care
Only 42% felt involved in decisions about their treatment or support plan. Around 1 in 3 didn’t know who to contact between appointments. These aren’t small gaps — they’re fundamental breaks in care.
Brain aneurysms change how people live, work and connect
More than half said their ability to work or study was badly affected. 38% had to stop working entirely. Social life, physical activity and relationships were also significantly disrupted — the ripple effects are real and long-term.
Support is there — but people can’t find or access it
A third of respondents didn’t know what support was available. Another 18% asked for help and didn’t get it. The system is too complex and too inconsistent — and people are falling through the cracks.
Recovery is ongoing — and often unsupported
Nearly 8 in 10 respondents said fatigue had a serious impact on their lives. Over 60% reported issues with thinking, memory and mental health. For many, recovery doesn’t end when they leave hospital — but the support does.
There’s a willingness to support progress — but the system doesn’t ask
Over half of respondents said they’d be interested in taking part in research. But only 15% had ever been invited. We’re not making the most of people’s lived experience, and we believe that this urgently needs to change.
What the data means for HBA Support
HBA Support is the UK’s first patient-led charity dedicated to supporting brain aneurysm patients and their families. Our work is driven by the real experiences of patients and families affected by these life‑altering conditions.
The survey results reinforce what we’ve always known: brain aneurysms change people’s lives in ways that survival alone doesn’t capture and the support for patients through their journeys is full of gaps and inconsistencies which has a negative life impact.
“We weren’t surprised by these findings — they reflect exactly what we’ve been hearing from patients and families across the UK. The challenges outlined in My Neuro Survey closely mirror what emerged from our own research with Costello Medical with looking at the gaps in guidelines and care pathways and the patient surveys we carried out earlier this year.
Again and again, we’re seeing the same gaps: a lack of follow-up after diagnosis or treatment, poor access to psychological support, and a system that leaves too many people navigating complex health decisions without the information or guidance they need.
When you bring all this evidence together, a troubling picture emerges — one of people surviving life-threatening events, only to be left unsupported in the long aftermath. That simply isn’t good enough. This data strengthens the case for change — and for doing it quickly.”
Rebecca Middleton, Co-founder and CEO, HBA Support
This year alone, HBA Support has been actively engaging with clinicians, NHS bodies, researchers, and policymakers to push for a more joined-up and patient-led approach to brain aneurysm care. We’ve:
Contributed to NHS England’s national genomic services engagement
Shared patient perspectives with neurosurgical teams, health researchers and ethics boards
Held direct conversations with MPs and members of the APPG on Neurology
Partnered with leading research institutions on hereditary risk and screening
Supported the development of new patient resources for clinicians and genetic counsellors
The insights from My Neuro Survey now form part of the evidence we’re using in these conversations — reinforcing what we’re hearing from families every day. They provide a broader data picture that strengthens our case for:
Faster diagnosis pathways
Support that extends far beyond surgery
Clear and accessible information at every stage
Opportunities for patients to shape research, policy, and services
We are using this data — alongside ongoing research and patient insight — in conversations with the NHS, policymakers, and researchers. Our goal: a system that sees and supports the whole person, not just the clinical event.
You can sign the Neurological Alliances open letter to the Secretary of State for Health and Social Care, Wes Streeting, now and tell him: Act now! https://bit.ly/ActForThe1in6
To learn more or get involved visit www.hbasupport.org or email support@hbasupport.org.
Resources and support
If you have any health concerns related to the topics in this article, please speak to your GP or a clinical professional.
Visit our Support page for free resources for people recently diagnosed with an hereditary brain aneurysm
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