The NHS has halted complex neck fusion ops, leaving patients to raise up to £150,000 for treatment overseas
Two young Britons with a deadly neck condition are begging the Health Secretary for urgent help after the NHS refused to perform life-saving surgery. With UK private surgeons having ceased the operation too, their only option is to fork out between £50,000 and £150,000 for specialist care abroad.
Deadly Neck Condition Ignored by NHS
Connor Edwards, 30, from Cannock, and Maisie Moore, 25, from Twickenham, both suffer from craniocervical instability (CCI). This severe disorder causes the skull to dangerously shift, crushing the brainstem and triggering dizziness, seizures, paralysis, and even death.
Connor met with health minister Ashley Dalton and his MP, Josh Newbury, last month, desperately pleading for help. But the NHS doesn’t offer the complex fusion surgery needed, and private UK surgeons stopped back in 2021.
Forced to Fundraise for Surgery Abroad
With no options at home, Connor and Maisie have resorted to crowdfunding, seeking specialist neurosurgeons in Spain and the US. The price tag? A staggering £50,000 to £150,000 each.
Connor said, “I’m 30 years old, stuck in bed most of the time, and can’t function. It’s stolen my independence. I can’t handle light or noise without agony. I’m scared and begging for my life.”
Maisie, who developed CCI after a fall, struggles to care for her daughter as even turning her head can trigger severe neurological collapse. She has battled excruciating headaches, blurred vision, and vertigo for four years.
Patients Face A Harrowing Future Without NHS Support
Experts warn that some patients have even considered suicide due to the crushing symptoms and treatment void. The condition often arises from Ehlers-Danlos syndrome (EDS), a genetic disorder that weakens connective tissue and causes spine instability.
Yet NHS policy pushes diagnosis responsibility onto GPs, blocking many from specialist referrals. Charities call this a national care failure, leaving thousands invisible within Britain’s health system.
MP Josh Newbury said:
“Connor’s story is heart-breaking. We’re pushing every door to get him treatment. But this isn’t just one case – we need better NHS diagnosis and care for everyone with EDS and CCI. Too many are unseen and unheard. We won’t stop fighting until that changes.”
Calls for Government Action
Connor and Maisie demand the government:
- Officially recognise CCI as a neurological emergency
- Restore national services for EDS and hypermobility patients
- Bring international experts to the UK for training and research
- Fund urgent surgeries abroad until UK services are fully restored
With private UK options vanished, patients like Connor and Maisie cling to charity funds for overseas surgery — their last glimmer of hope.
Support Their Fight
Help them by visiting their GoFundMe pages:
NHS Responds
A Department of Health spokesperson said:
“We know these conditions are tough and sympathise with sufferers. Our government is committed to improving care with more integrated, personalised services and digital innovation, backed by £29 billion extra funding. Minister Dalton welcomed discussions with Connor and charities to better understand the gaps and improve NHS care.”
