HBA Support commissioned research to understand how people with a family history of brain aneurysms are looked after in the NHS. In this blog, we reveal the shocking gaps in screening and management, and the unequal care people receive for this overlooked condition.
Brain aneurysms occur when a weak spot in a blood vessel bulges and fills with blood like a balloon. If they burst, they can cause a life-threatening brain haemorrhage (brain bleed).
Hereditary brain aneurysms, which occur in people with a strong family history of the condition, pose unique challenges: they tend to burst earlier, are more likely to occur in multiple locations in the brain, and often have poorer chances of survival.
While cascade screening - screening for family members at risk - and treatment for hereditary brain aneurysms are available, they’re inconsistent across the UK, leaving families at risk.
To get a more complete picture of the situation, Hereditary Brain Aneurysm (HBA) Support commissioned Costello Medical to investigate how the UK healthcare system manages families at risk of brain aneurysms. Costello Medical did this by analysing care guidelines from across the NHS, as well as reviewing academic research gathered as part of our previous Targeted Literature Review.
What did the research find?
The research highlights crucial gaps and inconsistencies in four different areas: screening, treatment of aneurysms, monitoring, and care after brain haemorrhages.
1. Cascade screening is inconsistent: For people with a significant family history of brain aneurysms, NHS guidelines recommend brain scans to identify if that person also has an aneurysm. But the recommendations are vague about how often this should be repeated, and in practice the guidelines aren’t always followed. This has resulted in inconsistencies across regions, with many families unable to access early detection.
2. Treatment doesn’t account for hereditary risks: Compared to spontaneous brain aneurysms, hereditary brain aneurysms have distinct characteristics and risks – yet guidelines for the treatment of aneurysms do not reflect these differences. There is also no formal training for healthcare professionals to address the specific needs of families with history of brain aneurysms.
3. Follow-up care is not standardised: Treatment guidelines are unclear on how often people with unruptured aneurysms should be monitored. This means practice varies across the country, leading to unequal care and uncertainty for patients and families.
4. Lack of specific guidance for brain haemorrhages in families: Current recommendations for treating brain haemorrhages focus on preventing further complications and repeat haemorrhages. But these recommendations don’t address the unique risks faced by families with a history of brain aneurysms – further contributing to inequalities in care.
What does this mean for families?
For families with a history of brain aneurysms, these gaps mean preventable tragedies, unnecessary suffering, and significant health inequalities. People at risk often feel abandoned, due to the lack of clear guidelines and consistent, equal care.
Where do we go from here?
While these research findings are disappointing, they confirm stories we’ve heard from families and reinforce the importance of our work. To address these gaps, we will:
Start conversations with the NHS, clinicians, and policymakers, with the aim of developing clear national guidelines for hereditary brain aneurysms.
Engage with families to ensure their voices are listened to, and their needs addressed.
Start to push for tailored care to address the unique risks faced by families. This will take time as we work with researchers to build more evidence and NHS policy makers.
Empowering patients to ask for screening, regular monitoring and repeat screening, if they are at risk of the familial disease and have a proven family history, until the time tailored screening guidelines are available to them.
Change won’t happen overnight – but together, we can reduce disparities in care and ensure families with a history of brain aneurysms receive the support they need and deserve.
View the full report
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