Two young Britons have made a desperate appeal to the Health Secretary for life-saving neck surgery abroad after being told the NHS cannot provide the treatment they need.
Connor Edwards, 30, from Cannock, West Midlands, and Maisie Moore, 25, a young mother from Twickenham, south London, both suffer from craniocervical instability (CCI). This serious condition causes the skull to become unstable and potentially crush the brainstem, leading to symptoms such as dizziness, vision loss, severe pain, blackouts, seizures, and paralysis.
Last month, Connor met with health minister Ashley Dalton, Labour MP for West Lancashire, and his own MP Josh Newbury, Labour MP for Cannock Chase, to plead for help. Neither patient can access the surgery they require in the UK, as the NHS does not offer the complex fusion procedure needed for CCI, and UK private surgeons have ceased performing it. The last such operation in the UK was conducted in 2021.
The only option for Connor and Maisie is to raise between £50,000 and £150,000 each to pay for specialist neurosurgeons abroad, in countries like Spain or the United States.
Connor says his independence has been “stripped away,” while Maisie, who developed CCI after a fall at home, struggles to care for her child as even turning her head can trigger neurological collapse.
For many patients, the symptoms are so severe and treatment options so limited that some consider suicide.
CCI can occur without Ehlers-Danlos syndrome (EDS) following trauma such as a fall or head injury, or due to arthritis and degenerative spine changes. However, many cases are linked to EDS, a genetic disorder that weakens connective tissue and affects joints, ligaments, blood vessels, and organs. This can cause chronic pain, repeated injuries, and in severe cases, instability at the top of the spine.
In these patients, weak or damaged ligaments allow the skull to slip or “drop” on the spine, stretching the brainstem and spinal cord, a condition known as CCI. Specialists say only fusion surgery can halt the decline in severe cases. The number of UK cases is unknown as no official figures are collected.
A new NHS programme has shifted responsibility for diagnosing EDS onto GPs, which patients say has blocked many referrals to specialists. Charities warn this has created a national failure of care, leaving tens of thousands without proper assessment and cases like Connor’s and Maisie’s overlooked.
With no NHS or private options available in the UK, both patients have turned to GoFundMe to raise funds for surgery abroad, joining a growing list of critically ill CCI patients seeking help from strangers.
Connor, 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, or 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 suffered for four years, spending most of her time bedridden with excruciating headaches, blurred vision, vertigo, and memory loss. She is desperate to regain her life, spend time with family, and play with her daughter.
Families have sold homes, taken out large loans, or relied on donations to afford surgeons in Barcelona or the US. Advocacy groups warn some patients have taken their own lives after being denied treatment.
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.”
Connor and Maisie are 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 operations 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: [Link]
Maisie’s GoFundMe: [Link]
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.
“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 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.”
Originally published by UKNIP.
