HBA Support calls for national action on screening and treatment inequality

Newly commissioned research, by Costello Medical on behalf of Hereditary Brain Aneurysm (HBA) Support, has revealed shocking gaps in screening and the care people receive for this overlooked condition, putting people and families at significant risk of preventable tragedies, highlighting the urgent need for action to ensure consistent screening guidelines and equitable care.

What are familial or hereditary brain aneurysms?

A brain aneurysm occurs when a weak spot in a blood vessel bulges and fills with blood, creating a balloon-like structure. If the aneurysm bursts, it can lead to a life-threatening brain haemorrhage, with one third of people dying and over two thirds of survivors suffering life changing disabilities. Last year over 5,000 people suffered ruptured aneurysms, and 1,700 patients died.

Familial or hereditary brain aneurysms, which occur in people with a strong family history of the condition, have further challenges. It’s estimated around 3 people die a week due to a hereditary brain aneurysm*. Their aneurysms tend to rupture earlier, are often present in multiple locations within the brain, and typically carry a lower survival rate.

The good news is that brain aneurysms can, mostly, be successfully treated if caught before rupture, and with the hereditary history as a clue to guide screening, patients can be screened and treated before tragedy strikes.

Rebecca Middleton, Founder and Chair of HBA Support says “Families with a history of brain aneurysms often face immense challenges to access screening and follow-up care. Through our research, we have thrown a spotlight on what many families have already told us. These gaps have real-world consequences for patients and their loved ones. It’s clear that we need defined, consistent, and equitable screening and care pathways to protect these vulnerable families at risk. ”

Findings of the research: gaps across the care pathway

Leading health research agency, Costello Medical, led the investigation into how the UK healthcare system manages families at risk of brain aneurysms. It did this by analysing care guidelines from across the NHS, as well as reviewing academic research gathered as part of HBA Support’s previous Targeted Literature Review.

The research highlights crucial gaps and inconsistencies in four different areas of concern:

• Inconsistent screening guidelines for individuals with significant family histories, leaving them unable to access early detection,
• Lack of specialist medical knowledge and limited tailored treatment for hereditary brain aneurysms,
• Unclear and non-standardised follow-up monitoring and care guidelines,
• Lack of specific guidance for the unique risks faced by families with a history of brain aneurysms.

Professor Diederik Bulters, Consultant Neurosurgeon, Professor of Neurosurgery at University Hospital Southampton, Chief Investigator for the ROAR Study, and Chief Medical Advisor and Trustee of HBA Support comments: “Early detection, regular monitoring, and appropriate treatment can save lives. This research represents a first and important step in building the evidence showing the need for tailored and personalised guidelines. We currently rely on the expertise and experience of individual neurosurgeons and neuro specialists, but we know that up and down the country there are inconsistencies in that advice. We hope these results, as well as the results of the Risk of Aneurysm Rupture (ROAR) Study, led by my team at Southampton University, will present further evidence for improved and informed screening and care of all patients with unruptured brain aneurysms, including those with the familial condition.”

HBA Support is now calling for urgent conversations with the NHS, clinicians, and policymakers to start a national conversation around the creation and implementation of recognised guidelines for hereditary brain aneurysms.

The goal is to ensure that families affected by the condition receive consistent, timely and tailored care, based on the latest evidence and best practices. HBA Support is also currently asking for patients to get in touch to take part in research and tell their stories so they can ensure patient needs are addressed.

Rebecca continues “We know that there is a long road ahead, and guidelines can take very many years to develop, but we are committed to starting a conversation and throwing a spotlight on the current state of care and disparities today. Until then, we will continue to empower and support our patient community to ask for diagnostic screening, regular monitoring and ongoing screening, if they are at risk of the familial disease and have a proven family history. Every aneurysm caught before rupture is potentially a life saved, and a family’s story changed from devastation to hope.”

* Annual deaths from brain aneurysms – Data from nomis (https://www.nomisweb.co.uk/) for mortality from subarachnoid haemorrhage were downloaded as an Excel spreadsheet on 21^st November 2024. The average for the 10 years from 2014 to 2023 was calculated. This was 1705 (i.e. over 1700). Familial deaths from brain aneurysms- 13% of these are familial (Van Hoe, 2021, World Neurosurgery, 151-235-248, Figure 2 of Van Hoe shows that 13% have more than 2 FDR i.e. familial).

About Hereditary Brain Aneurysm Support (HBA) Support

HBA Support is the UK’s first patient-centred organisation to provide information and support for people affected by hereditary brain aneurysms and their families. Since 2022, HBA Support has been dedicated to supporting hundreds of people affected by hereditary brain aneurysms, building a community for families that have been given a hereditary brain aneurysm diagnosis or suspect there is a pattern or cluster in their family. The organisation works closely with the medical, research, and policy communities to improve information and research, ensuring those affected receive the support they need.

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