Young Britons beg Health Secretary for £150k neck ops abroad
The NHS doesn’t offer the procedure, and UK private surgeons have stopped. Their only option is to raise £50,000-£150,000 each for neurosurgeons abroad.
Patients say the UK has (Image: Getty)
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TWO young Britons have issued a desperate plea to the Health Secretary for life-saving neck surgery abroad – after being told the NHS can’t help them.
Connor Edwards, 30, from Cannock, West Midlands, and young mum Maisie Moore, 25, from Twickenham, south London, both suffer from craniocervical instability (CCI) – a devastating condition where the skull can become so unstable it crushes the brainstem, causing dizziness, vision loss, severe pain, blackouts, seizures and even paralysis.
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Last month Connor met health minister Ashley Dalton, Labour MP for West Lancashireand his own MP Josh Newbury, Labour MP for Cannock Chase, pleading for help.
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Neither patient can get the surgery they need in Britain. The NHS doesn’t offer the complex fusion procedure for patients with this condition, and UK private surgeons have also stopped. The last operation was carried out in 2021.
Their only option is to raise £50,000-£150,000 each for specialist neurosurgeons in Spain or the US.
Connor says his independence has been “stripped away”, while Maisie, who developed the condition after a fall at home, struggles to care for her child as even turning her head can trigger neurological collapse.
For many, the symptoms are so severe and the lack of treatment options so profound that patients consider suicide.
Patient appeals to health minister Ashley Dalton (Image: Getty)
In a proportion of cases CCI can occur without EDS following trauma such as a fall or head injury or as a result of arthritis and degenerative changes in the spine.
However for many others the debilitating neck problems are driven by a genetic disorder known as Ehlers-Danlos syndrome (EDS) – that weakens the body’s connective tissue and affects joints, ligaments, blood vessels and organs. It can cause chronic pain, repeated injuries and – in severe cases – instability at the top of the spine.
For these patients the weak, damaged or torn ligaments allow the skull to slip or “drop” on the spine, stretching the brainstem and spinal cord – known as CCI. In severe cases, specialists say only fusion surgery can stop the decline. It is not known how many cases there are in the UK as no figures are collected.
A new NHS programme pushed responsibility for diagnosing EDS onto GPs, which patients say has blocked many referrals to specialists..
Charities say this has created a national failure of care, leaving tens of thousands without proper assessment – and cases like Connor’s and Maisie’s slipping through the cracks.
With no route through the NHS and no private options left in the UK, both say they have been forced onto GoFundMe, joining a growing list of critically ill CCI patients begging strangers for help.
Connor, who was diagnosed by a specialist in Barcelona last year said: “I’m 30 years old, spend most of my time in bed and can barely function. I don’t have a future, I don’t work, go out in the world, make friends. It has robbed me of my independence. I cannot even tolerate sunshine, light or sound without feeling pain. I can’t do anything. I can only hold on so long. I’m scared and pleading for my life.”
Maisie has been suffering now for 4 years. She spends most of her time bedridden with excruciating headaches, blurred vision, vertigo and memory loss. She is desperate to get her life back, go out and spend time with her family, and play with her daughter.
Families have sold homes, taken out huge loans or relied on donations to reach surgeons in Barcelona or the US. Advocacy groups warn some have taken their own lives after being denied treatment.
Painful condition robs patients of independence (Image: Getty)
In a statement Josh Newbury MP said: “It was harrowing to hear Connor’s story, which is why we’re knocking down every door to make sure he gets the treatment he needs. But this isn’t just about one person. We must also push for better diagnosis for everyone living with EDS and CCI across the NHS. Right now, too many feel unseen and unheard in one of the world’s largest healthcare systems. That has to change, and we’ll keep fighting until it does.”
The pair is urging the government to:
• Recognise CCI as a serious neurological emergency
• Restore national services for EDS and hypermobility
• Bring international experts to the UK for training and trials
• Allow NHS funding for urgent ops abroad until UK services are rebuilt
Maisie, now an online friend of Connor’s, says her only hope is surgery in Barcelona.
Connor’s GoFundMe:
Maisie’s GoFundMe:
https://www.gofundme.com/f/
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patients hope health secretary Wes Streeting will help (Image: Getty)
A Department of Health and Social Care spokesperson said: “We know these conditions can be debilitating and our sympathies are with all of those suffering. This government is committed to improving the lives of those living with these conditions, putting the patient voice at the heart of care.
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“Minister Dalton was grateful to hear directly from Connor Edwards and representatives from EDS charities about their experiences to understand why certain conditions are struggling to access research or NHS care.
“We know there’s more to do to address long-standing gaps in in services, and our 10 Year Health Plan, along with our record £29 billion extra funding, will address these and improve outcomes for people with these conditions, through more integrated, personalised care in the community and ground-breaking digital innovation.”
