Why is the surgery not available on the NHS?

There have been countless cases of patients across the UK in the same predicament as Maisie unable to access adequate care. The most recent ones publicised were that of Holly McConnell nearby in Roehampton, and Connor Edwards from Cannock. Holly's Dad sold his home to pay for her treatment, whilst Connor who was financially less fortunate approached his MP Josh Newbury for help. The MP raised Connor's case in Parliament on September 10th 2025. In response the Prime Minister has agreed to meet with Connor and the EDS Society but it is unclear when this meeting will take place, and if it will benefit Maisie whose Craniocervical Instability was caused by an injury rather than a genetic predisposition. 

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Currently the NHS are in the midst of conducting a study using upright dynamic MRI imaging to access the presence of craniocervical junction abnormalities in patients with hypermobility spectrum disorder or hEDS (hypermobility Ehlers Danlos Syndrome). This study could lead to larger surgical trials that would help deliver improved care to highly disabled patients. However, when this study is expected to conclude, and whether it will lead to surgical trials, or benefit those without joint hypermobility disorders, such as Maisie, is unclear. 

 

There were discussions of a surgical trial involving US and UK Neurosurgeons, but for reasons unknown the trial didn't lift off the ground. We tried to find out more but none of the specialists we approached could give us a definitive answer. One surgeon suspected the effects of the pandemic were to blame, another claimed that the potential study lacked participants, and at a recent Neurosurgical conference it was divulged that the community could not agree upon diagnostic measurement criteria for CCI. 

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Why is the surgery not available privately in the UK?

Up until 2021 a well respected spinal surgeon was doing craniocervical fusions in Leeds. For reasons unknown he is no longer performing fusions on CCI patients, and sadly no British surgeon has taken his place. 

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​Due to the above UK patients have no clear treatment pathway. If conservative measures such as physio, pain relief, and pain management have failed to work there are no other options available. Many people, like Maisie, have been left with debilitating symptoms, forced to go abroad at a huge cost to themselves and their families. In most cases people are having to resort to fundraisers.

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Why does the cost of surgery keep alternating?

Maisie has been on the waiting list for private treatment in Spain for some time now. Unlike the National Health Service, private clinics work like a business, increasing or reducing costs per market value. Because Maisie has been on the waiting for so long the Spanish hospital, out of good will, has kindly offered to reduce the cost of surgery to 45k. However we have been informed that hospital fees are predicted to increase as of March 2026. It is therefore vital that we raise the necessary funds quickly to meet our new target.

​It is also important to note that Maise might need a more extensive surgery, involving a longer fusion, as time drags on. Every day we delay treatment Maisie deteriorates, risking further irreversible damage to her body, and inevitably larger medical bills.