Scoliosis in Rett syndrome: Repeat cancellations of essential operations in UK as a safeguarding concern.


This article may be a difficult read for young or newly diagnosed families but for families with children aged 5-16, especially those who already have identified Scoliosis, it is essential reading. 

We are hearing from too many UK families of people with Rett syndrome that essential Scoliosis surgeries are being cancelled multiple times.  

This is a serious safeguarding issue. Patients who are unable to access these vital surgeries are deteriorating to the point that they are deemed ineligible for surgery. 

Without surgery, they will continue to deteriorate, experience more pain and an increase in life-threatening respiratory and gastrointestinal issues as their spine curves to the degree that they are crushing their own internal organs.  

Many UK patients, regardless of age are having their operations canceled several times and then being sent to end-of-life care.  

This is unacceptable. We know from research that patients with Rett syndrome can live into their fifth decade with adequate health care (Tarquinio et al., 2015).

Repeated cancellations of these essential operations is an example of wholly inadequate health care. 

We know there have been delays and disruptions to the UK’s National Health Service (NHS) over the last five years for a number of reasons. 

But it is nothing short of discrimination to repeatedly cancel these life-saving operations for children, young people and adults with Rett syndrome and then blame the outcomes on Rett syndrome being a progressive condition. 

At Reverse Rett, we will always be open and transparent about issues affecting our community which is why we know it is essential to speak out about this issue.

If you care for someone with Rett syndrome who is waiting for scoliosis surgery and or who has had this surgery cancelled please get in touch with us via email [email protected] or by phone 0161 552 5001.


Tarquinio DC, Hou W, Neul JL, Kaufmann WE, Glaze DG, Motil KJ, Skinner SA, Lee HS, Percy AK. The Changing Face of Survival in Rett Syndrome and MECP2-Related Disorders. Pediatr Neurol. 2015 Nov;53(5):402-11. doi: 10.1016/j.pediatrneurol.2015.06.003. Epub 2015 Jun 26. PMID: 26278631; PMCID: PMC4609589. 

Additional Resources  

Downs J , Bergman A, Carter P, Anderson A, Palmer GM, Roye DP, van Bosse H, Bebbington A, Larsson E-L, Smith BG, Baikie G, Fyfe S, Leonard H (2009). Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidence, SPINE, 1;34(17):E607-17. 

Fu C, Armstrong D, Marsh E, et al Consensus guidelines on managing Rett syndrome across the lifespan BMJ Paediatrics Open 2020;4:e000717. doi: 10.1136/bmjpo-2020-000717) 

UK Rett Disorders Alliance Health Checklist