A family in Cross Keys say they have had 'overwhelming' support, raising £60,000 to pay for their two-year-old daughter to have an operation in America to help her to walk. Maisie Cooper has cerebral palsy. The surgery is not available in Wales.
The Welsh Government says the Selective Dorsal Rhizotomy operation, which Maisie is due to have in the USA, is "not routinely commissioned by the NHS here because there is a lack of clinical evidence at this time to support the treatment."
It has also recently stopped being commissioned in England.
I have every sympathy with families who have children with cerebral palsy and fully appreciate their desire to pursue treatment they feel could improve their child's life.
SDR is not routinely commissioned by the NHS because the Welsh Health Specialised Services Committee's conclusion is that there is a lack of clinical evidence at this time to support the treatment. This is consistent with the National Institute of Clinical Excellence’s (NICE) view that further research into this procedure and measurement of long term outcomes should take place.
NHS England has announced a 'commissioning through evaluation' process to fully assess the effectiveness of SDR in order to inform its future use. Plans for this evaluation are at an early stage, and our intention in Wales is to be part of that process.
If clinicians in Wales consider a treatment, which is not approved by NICE, would benefit their patient, they can still apply for the treatment via the Individual Patient Funding Request.
– Mark Drakeford, Welsh Government Health Minister
Maisie's father, Gareth Cooper, says they are really lucky to have been able to raise the money needed for her to have surgery in the USA, "but if you're unable to, you're preventing a child from living a life as normal as they can."
He says the fact the surgery is not available on the NHS here is "a real bitter pill to swallow".
A two-year-old girl from Cross Keys near Newport is set to undergo pioneering surgery in America to help her walk.
Maisie Cooper suffers from spastic diplegic cerebral palsy. Six months ago her parents, Hayley and Gareth, set out to raise the £60,000 needed for an operation to help her walk. Now they're set to take little Maisie to Missouri for the life-changing operation.