Ashby-based charity Hereditary Brain Aneurysm Support, has officially launched their landmark national report at a special event at the House of Commons.

Sponsored by Amanda Hack, MP for North West Leicestershire, the report shows huge gaps and inequalities in screening, care and rehabilitation experienced by brain aneurysm patients.

When Loughborough man Andy Motch collapsed in the gym with a thunderclap headache, doctors said he had a 40% chance of survival.

A ruptured brain aneurysm had caused a life-threatening bleed and, against the odds, his life was saved by an emergency surgery.

Just five days later, Andy was home.

Andy and Rebecca at the Houses of Parliament (Photo: HBA Support)

Andy had a family history of brain aneurysm. His dad had died of a brain aneurysm when Andy was just four and his grandad had also showed symptoms throughout his life.

Despite a clear hereditary pattern, Andy can no longer access the ongoing screening that could detect another aneurysm before it bursts.

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'The NHS saved my life,' said Andy, 'but the care system for patients like me is broken.

'I'm terrified for what happens next. I can't get the monitoring I need, even though my family history puts me at high risk of developing another aneurysm in later life.'

Andy is not alone.

Hereditary Brain Aneurysm Support, which is based in Ashby, is the UK's only dedicated hereditary brain aneurysm charity.

In HBA Support's latest report, they show the lack of consistent care for individuals with hereditary brain aneurysms.

Brain aneurysms affect an estimated 1 in 30 people, which is over 2 million people in the UK or 500 of the 15,000 people living in Ashby who could be living with an unruptured brain aneurysm.

For those with a hereditary link, the risks are even higher: aneurysms are more likely to rupture, often appear in multiple locations, and carry lower survival rates.

Founder and Chair of HBA Support, and a brain aneurysm patient herself, said: 'Families with a history of aneurysms are being left to fight for screening that could save their lives.

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'Our report shows a system full of gaps - and patients are paying the price.'

HBA Support is calling for urgent action from the government and NHS leaders, including:

• National family screening guidelines and formal recognition of hereditary brain aneurysms as a genetic condition,
• Better infrastructure, data collection, GP education, genetic counselling and psychosocial support,
• Consistent rehabilitation for survivors, in line with stroke pathways

'We are urging policymakers, clinicians and NHS England to work with them to build national standards that finally give families like Andy's the protection they deserve.'

Amanda Hack MP sponsored the new report (Photo: HBA Support)

The report was launched at The Houses of Parliament on 10 February and sponsored by North West Leicestershire MP Amanda Hack.

Hack said: 'It's aways lovely to meet and host local organisations in Parliament.

'It was a pleasure to host Rebecca and the team from Hereditary Brain Aneurysm Support, based in Ashby, at their recent reception in Parliament.

'Their research identifies the alarming disparities and inequalities in care, with familial brain aneurysms remaining significantly under-addressed within the UK health system.

'I look forward to further discussions on widening the screening pathway to include patients with familial aneurysms.'

HBA Support have written an open letter to the Secretary of State for Health and Social Care, Wes Streeting, asking the department to read the report and take urgent action. You can sign their letter at hbasupport.org/brain-aneurysm-care-open-letter.

If anyone is worried about a family pattern, the charity advises that you speak to your GP and visit hbasupport.org for more information.