We call on the UK Government to work with the NHS to improve awareness of brain arteriovenous malformations (AVMs) among healthcare professionals and to provide better long-term medical, emotional and financial support for people living with this rare and life-changing condition.

Brain AVMs can have devastating consequences, including brain haemorrhage, stroke, seizures, neurological disability, and ongoing physical, cognitive, and emotional difficulties.

The impact does not end after treatment. Many patients face a long and uncertain recovery, with fatigue, anxiety, reduced independence, changes to employment and financial pressures that can continue for months or years.

Because brain AVMs are uncommon, many patients experience delays in recognition, referral, diagnosis, and treatment, while frontline healthcare professionals may have limited experience of identifying and managing them.

This lack of awareness can leave patients and families feeling isolated, frightened and without the support they need during some of the most difficult periods of their lives.

We ask the Government to:

• Improve education and training on brain AVMs for GPs, ambulance services, emergency department staff and other frontline healthcare professionals to support better-informed care.
• Review referral pathways so patients with suspected brain AVMs or related neurological symptoms can access assessment and treatment without unnecessary delays.
• Ensure patients recovering from brain AVMs/brain haemorrhage/stroke have access to appropriate rehabilitation, fatigue management, psychological therapy, and vocational support to help them rebuild their confidence, independence, and everyday lives.
• Provide better access to emotional and mental health support for patients and families coping with fear of recurrence, uncertainty, trauma, changes in mood and ability, and the psychological impact of living with a neurological condition.
• Recognise the financial impact of living with a neurological condition and provide better support for those whose ability to work is affected by recovery, fatigue, disability, or ongoing symptoms. Many patients face reduced income, increased costs, debt, and uncertainty about their future while they focus on recovery.
• Ensure patients are given clear information about available financial assistance, benefits, employment support, and workplace adjustments so that illness does not lead to avoidable financial hardship.

I know how important this is because I am living it.

My name is Samira and it took over a year for me to receive my diagnosis. When I have needed emergency care, ambulance crews and A&E staff have often had little or no knowledge of brain AVMs, resulting in delays while my condition was explained and understood.

Six months after Gamma Knife treatment and a stroke, my life is still on hold.

Recovery has been much harder and much longer than many people realise. I can only work part-time, I live with constant fatigue and I am experiencing financial hardship because my ability to work and live normally has been affected.

 Awareness alone is not enough. Patients need a complete support system. One that recognises the medical, emotional, and financial challenges of living with a brain AVM and provides help long after initial treatment.

Sign this petition and together we can create a healthcare system that recognises rare conditions, listens to patients’ experiences, and ensures nobody is left struggling alone because their condition is uncommon.