CAMPAIGNERS have welcomed a Commons debate which gave them the go ahead to raise the profile of an operation which is not available on the NHS, but can give young cerebral palsy sufferers a independent life,
Last week Daventry MP Chris Heaton-Harris told fellow MPs that 145 British families had raised around £50,000 each to take their children to a hospital in America for the life changing Selective Dorsal Rhizotomy.
South Northants toddler Seb Strudwick returned from the St Louis Children’s Hospital in January after his family successfully raised the money for the operation and post-op physiotherapy.
The operation has been carried out in America since the 1980s and is a standard procedure available through US medical insurance policies.
But in the UK NHS trusts decide on a case by case basis whether to fund the operation.
Appealing to the health minister Paul Burstow, Mr Heaton-Harris said it was now time the life-changing, and well-researched operation was funded across the country by the NHS. He said without the operation children were being consigned to a life in a wheelchair unnecessarily.
Mr Burstow said promoting SDR was best done doctor to doctor and urged Mr Heaton-Harris continue work with campaign group Support4SDR to raise awareness of the operation.
Jo Davies from Daventry helped create the Support4SDR campaign after her she went through the fund raising process and operation with her daughter Holy, and has been working closely with the Strudwick family.
She said: “What they are now saying, the Minister Paul Burstow agreed to go away and look at the NHS after care which Mr Heaton-Harris pointed out families had to fund themselves.
“The second thing is he has given Support4SDR the go ahead to raise the profile of the operation. It has to be commissioned locally, so it is about making sure GPs and consultantss are all aware of SDR and there is evidence of it’s success.”
Mrs Davies hopes eventually there will be centres of excellence in the UK where the operation will be made widely available so that families like hers and the Strudwicks do not have to rely on the generosity of their communities.
Mr Davies said her daughter was almost unrecognisable after the operation, and where she would trip very easily, she can now run and jump.
Mrs Strudwick said: “The debate can only be seen as a positive as far as I’m concerned. It was brilliant for the charity Jo is trying to set up. I spoke to our MP Andrea Leadsom who said she will help in any way she can.”
Mrs Strudwick said she had become frustrated with UK consultants who would not consider the American evidence as justification for the procedure.
She added: “Unfortunately they just don’t seem to understand in the NHS the importance of what we have achieved as parents with our children. It is frustrating that our consultant will not fully recognise the benefits of the operation. It is disheartening when your consultant asks you to prove to him the operation is valid.
“He said there’s no UK medical proof that long term this operation prevents the need for other operations an can stand the test of time.”
Mrs Strudwick said Seb is continuing to improve and this week stood by himself for 20 second and caught and threw and ball, something that was unthinkable before the operation.
A spokesman for Northants NHS said: “Selective Dorsal Rhizotomy comes under the commissioning responsibility of the East Midlands Specialised Commissioning Group but has not yet been assessed as it is a relatively new procedure and a policy is yet to be agreed.
“NICE is currently developing clinical guidelines on the management of spasticity in children and young people that will provide guidance to the NHS on whether SDR represents a clinically and cost-effective use of NHS resources - a final version of the published guidance is due to come out in June this year.
“In the absence of any policy or commissioning arrangement, funding applications are considered by individual PCTs on the grounds of clinical exceptionality through the Individual Funding Request process.”