Parents accuse NHS in Wales of allowing children with cerebral palsy to 'suffer unnecessarily'

Welsh health officials have been accused of allowing children with cerebral palsy to suffer unnecessarily by refusing to fund an operation to aid their mobility despite many patients in England receiving NHS support.

Welsh families have been forced to raise up to 60,000 to pay for Selective Dorsal Rhizotomy (SDR), which has been credited with helping many immobile children walk for the first time.

Several hospitals in England have begun to perform the pioneering surgery, with a significant proportion being funded through the NHS. But families in Wales have been denied public funding because health officials here have refused to support the surgery, claiming a lack of clinical evidence.

The decision is in direct conflict with the verdict of the National Institute for Health and Clinical Excellence (Nice), which says the treatment can improve limb spasticity in the longer term.

WalesOnline understands that approximately 60 children in Wales have been denied funding for the procedure, forcing families to raise huge sums to pay for the treatment.

Welsh children who have had the surgery and their parents gathered at a fundraising event in Cardiff on Saturday to show the benefits of the procedure.

Cath Wilton, whose five-year-old daughter Elodie was able to walk unaided after undergoing SDR surgery two years ago, said children across Wales were suffering unnecessarily.

Speaking about her daughters progress, the 35-year-old legal consultant, of Dinas Powys, said: Now she doesnt have any limitations. If we hadnt done this, she would be in a wheelchair for long distances and crutches, but now shes completely independent.

It is through pure ignorance on the subject that [the Welsh Health Specialised Services Committee] has made a decision with very little information. They have isolated the children in Wales. There are children suffering unnecessarily here.

In a report issued in December 2010, Nice advised that the NHS could consider the SDR operation for patients with cerebral palsy, providing that uncertainties and risks were explained. The Welsh Health Specialised Services Committee, which rules on the funding of treatments, decided in February this year that SDR was not generally supported for Welsh residents.

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Parents accuse NHS in Wales of allowing children with cerebral palsy to 'suffer unnecessarily'