Bridging the Gap: Patients and Clinicians Speak Up to Shape Brain Aneurysm Support
- HBA Support
- Jul 28
- 4 min read
Updated: 4 days ago
At HBA Support, we know that living with a brain aneurysm can feel frightening and overwhelming. We are also all too aware that as a community, we are not asked for our thoughts or opinions enough – or in some cases, at all.
For this reason, we’ve recently taken matters into our own hands by conducting a survey involving both patients and healthcare professionals to help us design personalised support for our community.
The insights gathered have been invaluable. While there was clear agreement between patients and clinicians in some areas, the responses also revealed important disconnects – especially around communication, emotional support, and the realities of living with a brain aneurysm day-to-day.
It's vital to hear from both clinicians and patients. Their perspectives – where they align, and where they differ – will inform the next stage of our work. As we continue to review the research gathered this year, we will be using our findings to shape a new patient guide that bridges the gap between clinical guidance and lived experience.
We are committed to listening to the views of the community, and making sure your voice is heard.
Insights Shaping the Guide
Patients want straight answers – and support beyond medical advice
Many patients told us they had difficulty accessing screening after discovering they could be at risk of a brain aneurysm. Diagnostic journeys varied, with some having to “push” for screening and only accessing it following persistent self-advocacy.
Once diagnosed, patients most urgently wanted to know about:
· Their risk of rupture
· Treatment options and recommendations
· The likely impact on their daily life
· Managing anxiety
· Possible implications for relatives
When asked, clinicians agreed that rupture risk and treatment options were the most common concerns among patients.
However, healthcare professionals may be underestimating the impact of being diagnosed with a brain aneurysm: when compared to patients, clinicians ranked mental health support lower on their list of priorities. This disconnect matters, because it risks emotional wellbeing not getting the attention it deserves in consultations, leaving patients feeling lost and alone.
Why the “ticking time bomb” narrative doesn’t help
As part of the survey, healthcare professionals sought to dispel the “ticking time bomb” misconception. This expression sums up the deep anxiety many patients experience as a result of living with an unruptured aneurysm, but clinicians are clear that this metaphor can be both harmful and misleading.
Most aneurysms remain stable over time, and clinicians noted that it would be helpful for patients to understand that treating an aneurysm may not be more favourable than monitoring it over time. In many cases, the best course of action is a “watch and wait” approach.
Meanwhile, patients highlighted the lasting psychological and physical toll of aneurysm diagnosis on families, urging clinicians to recognise the generational impact of the condition with greater empathy and awareness. Patients want frontline staff to be better informed about hereditary aneurysms so that a proactive approach to screening can be implemented.
This highlights the need for accurate, balanced information so that patients can better understand their condition, their risk, discuss their options with confidence, and make informed choices in partnership with their medical team.
Practical guidance is often missing – especially around lifestyle
Patients feel that they are missing practical, everyday advice regarding daily activities, including exercise.
One patient said, “I gave up going to [the] gym which I loved because I was afraid of increasing my heart rate.”
Many said they weren’t sure what was safe, what to avoid, or how to adapt their lifestyle to protect their health. Blood pressure monitoring came up as the single most helpful lifestyle change, and so it is vital that patients are provided with clear instructions for monitoring and managing it.
Clinicians echoed this, with 100% of healthcare professionals naming blood pressure management as essential, and 91% highlighting the importance of smoking cessation.
Some patients felt that their mental health was not supported, with one explaining that they “felt like nobody cared” and that they’d struggled with anxiety and panic attacks.
This emphasises the need for reliable, practical information that empowers patients to make lifestyle choices to support their health.
How Can We Build a Bridge Between Patient and Clinician Perspectives?
Both patients and clinicians want better tools for navigating a brain aneurysm diagnosis. Their feedback points to several areas where support is most needed, including:
Clear, balanced information about rupture risk, and why “watch and wait” may sometimes be the best option
Decision-making support, helping patients understand the risks and benefits of different options
Realistic guidance on what to expect during long-term monitoring
Practical lifestyle advice, especially around exercise, blood pressure, sleep, reducing alcohol intake, and smoking cessation
Emotional support that acknowledges the psychological impact of diagnosis
Support with self-advocacy and building confidence in healthcare settings
Tools to navigate family conversations and to communicate effectively with healthcare professionals
Looking Ahead
Our survey has made it clear: patients are seeking clarity, emotional support, and practical tools to help navigate life with a brain aneurysm. Clinicians want their patients to feel informed, reassured, and empowered to make decisions about their care.
We will now begin bringing together all the insights gathered through this research to develop a guide that reflects both the patient and clinician voice. Our aim is to create a resource that patients can trust, and professionals can confidently recommend.
We look forward to sharing it with you soon.
A Big Thank You to everyone who took part in the survey. We know that the community is not given a voice often enough, and we are grateful to you for sharing your experience to help us shape this valuable guide for patients and their families.
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
