1. ITV Report

Children with Cerebral Palsy in Wales "missing out"

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The Welsh Government spends more on health services than anything else but, as budgets get tighter, tough decisions have to be made - and now parents say their children are missing out on life-changing operations routinely funded in England.

Helen Morgan from Monmouth is one of them.

Her daughter, Chase Vaughan, is a happy and playful seven year old girl, but the nerves in her legs are over active because she has Cerebral Palsy. Her condition causes severe tightness in her muscles known as spasticity, so she has to wear leg braces, and after just a few minutes of playing, Chase gets exhausted and frustrated.

As she gets older her condition is deteriorating.

I’m constantly worrying about how she’s going to be in the future… My concern is that it’s just going to get progressively worse and she could end up in a wheelchair.

– Helen Morgan

Helen wants her daughter to have a pioneering operation called Selective Dorsal Rhizotomy, or SDR, which she thinks could change Chase’s life - but the procedure has never been funded by the NHS in Wales.

That’s why the group 'Support for SDR Wales' is campaigning on their behalf.

Last November they marched through Cardiff Bay, to hand a petition to the Welsh government, calling for the procedure to be made available on the NHS.

We’ve got children who are suffering unnecessarily in the UK. Four or five year old children, being woken at night with really painful muscle spasms and that’s a daily thing, it’s what they live with. To think that this procedure could eliminate that for them, it's heart breaking really that it’s not available to everybody.”

– Cath Wilton, Support for SDR Wales

But experts at the Welsh Institute for Health and Social Care say pressure on health care spending is increasing.

The Welsh Government itself doesn’t decide how much money it gets. It is given a pot of money by the UK Government. So, clearly, when cuts are being made - and cuts are being made across the UK, the pot of money the Welsh Government gets is cut. The Welsh Government then can decide, and has decided, that it needs then to reduce spending.”

– Lisa Turnbull, Welsh Institute of Health and Social Care

There is still little evidence about how well the procedure can maintain improvements in the long term. That’s why the team at Frenchay Hospital in Bristol is collating information for a national research programme, which compares the results to other procedures for children with Cerebral Palsy.

Jenny Smith is one of the physiotherapists involved.

Results at the moment are very promising. Obviously the children come in at different levels to start with so our goal setting is very specific for that child. But as soon as you relieve the muscle tone and they have the opportunity to strengthen, every day quality of life tends to improve. Often people think that SDR is just about a gait improving operation, how to improve their walking, but there are other benefits – children can put their socks on for the first time, they’ve got the movement of their hip so they can sit cross legged on the floor with their classmates rather than being sat on a chair.

– Jenny Smith, Frenchay Hospital

NHS England has now said funding may be provided later this financial year for a small group of patients to specifically gather more information about the operation as part of a formal evaluation. Here in Wales the government has said it plans to be part of that process - but no commitment has been made to paying for the procedure.

The Health Minister has released a statement saying he has 'every sympathy for the families of children with cerebral palsy’, but he says SDR is ‘not routinely given on the NHS here because of a lack of clinical evidence'. It went on to say that 'if clinicians do think their patients would benefit, they can apply for treatment via the Individual Patient Funding Request (IPFR).'

But the IPFR hasn’t funded a single case in Wales.

Cuts to public services are increasing; over the next couple of years that situation is going to get worse. So these kinds of decisions as to ‘we cannot provide that service in Wales’ or ‘we cannot provide that drug in Wales’ are going to become more and more common. It is in the interests of everybody to really understand these issues and to be clear what they themselves feel, and be ready to tell the Welsh Government that.

– Lisa Turnbull, Welsh Institute of Health and Social Care says

Tonight, Wales This Week follows Helen Morgan and her daughter Chase as they fight for the operation which could transform Chase's life.[

]( This Week, One Small Step is on at 8 on ITV Cymru Wales