Why is the surgery not available on the NHS?

​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. 

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Some years ago, world renowned CCI expert neurosurgeon Dr Fraser Henderson was invited to the UK to offer his expertise and assist UK neurosurgeons in a trial study. Sadly, the study didn’t go ahead and concrete reasons as to why this was the case are unknown.

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The lack of an NHS treatment pathway, was raised at a recent NHS
conference in Liverpool. Neurosurgeons debated how best to analyse MRI scans for Craniocervical Instability, after being presented with the latest research by world renowned expert and neurosurgeon Dr Paolo Bolognese. They agreed that further research and clinical studies were needed in the UK, however concrete plans as to when these would take place were not divulged.

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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.