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Mother calls for approval of specialist surgery for children with cerebral palsy

A mother from Blackwood is campaigning for the approval of a specialist surgery to help the mobility of children with cerebral palsy.

Two year old Awstin was born with cerebral palsy. His balance and mobility is affected.

His mother, Clare Williams, wants a Selective Dorsal Rhizotomy Surgery (SDR) to help with his mobility. If successful, it can reduce muscle stiffness and improve a child’s mobility.

However, it is not available on the Welsh NHS.

A number of hospitals in England perform the operation but the Welsh NHS is yet to follow suit after a proposal was rejected.

He cannot go up steps, go down steps. He can’t really run. He gets tired very quickly. So then he’ll just fall. His balance is very poor. It’s hard. It’s horrible. He’ll try… we’ll go to a play centre and he’ll try and climb up, and then he’ll just fall down, and then you’ll see younger children able to do it.

The main thing is the spasticity will remove from his legs, so he’d be able to jump, be able to normal, his foot won’t turn in so much. Obviously he’ll have to have quite a lot of physio still after it. But before we can do that, we need to raise the money, the funds to have the operation, and get seen really.

– CLARE WILLIAMS, AWSTIN’S MOTHER

Clare is fundraising to have to operation carried out in Bristol.

The Welsh NHS has funded a small number of children to have the operation but there are no plans for a wider rollout.

The Welsh Government say they want the full results of the English study before coming to a decision.

We are aware of the position in England. The Welsh Health Specialised Services Committee (WHSSC) is responsible for the joint planning of specialised and tertiary services on behalf of our health boards and are best placed to respond.

– WELSH GOVERNMENT SPOKESPERSON

Awstin

The Welsh Health Specialised Services Committee advises on offering treatments like SDR, but say they will review the provision next year after sufficient evidence:

The provision of SDR was carefully considered by WHSSC’s prioritisation panel in October 2018 where members were presented with an interim report on NHS England’s Commissioning Through Evaluation process into the use of this treatment for children with cerebral palsy.

The panel felt that a decision on SDR should be only be taken once all the supporting evidence is available in the final report of the Commissioning through Evaluation process which we expect to be published shortly. WHSSC plans to review the provision of SDR again in 2019.

– DR SIAN LEWIS, WELSH HEALTH SPECIALISED SERVICES COMMITTEE

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