On Monday the first programme I’ve ever produced was shown on ITV Wales. The positive feedback I received was overwhelming, but my achievement was nothing compared to the determination and strength shown by the people who told me their stories. One in particular stood out for me, that of Helen Morgan and her daughter Chase Vaughan, whose operation we filmed – this is their story…
The Health Service is still the largest area of expenditure for the Welsh Government – but in real terms, the pot of money available is getting smaller. Now tough decisions have to be made on where money is spent.
Parents of children with cerebral palsy in Wales feel their youngsters are missing out as a result because an operation that could potentially improve their quality of life isn’t being paid for.
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. It causes severe tightness in her muscles, known as spasticity, so she has to wear leg braces and after just a few minutes playing Chase is exhausted and frustrated. As she gets older her condition is deteriorating.
Her mum Helen says “I’m constantly worrying about how she’s going to be in the future and it’s hard to watch your child go through how she is. And she’s finding it tough as well. She’s starting to get in pain and stuff in her legs which she didn’t have before. My concern is obviously as she’s got worse over time it’s just going to get progressively worse and she could end up in a wheelchair.
That’s why she wants her daughter to have a pioneering operation called Selective Dorsal Rhizotomy, or SDR, which she thinks could change her daughter’s life. But the procedure has never been funded by the NHS in Wales. So to pay for the operation and intensive physiotherapy afterwards, Chase’s family have been trying to raise forty thousand pounds.
“We’ve done so much fundraising” Helen says. “We started in August last year and we’ve done everything, we’ve done any type of event you can think of. We’ve had amazing support from our friends and family. Monmouth’s not exactly a huge town but everyone’s got behind us.”
But Helen is angry that she has had to fundraise as she believes the operation should be available on the NHS. “When you’ve got a special needs child, obviously their needs are quite high already and it’s taken over our lives and it does make me cross because she needs this treatment and we’re not getting the help we need.”
But experts at the Welsh Institute for Health and Social Care say pressure on health care spending is increasing. Lisa Turnbull says “The Welsh Government can decide how much money the NHS in Wales should get. But it is only fair to point out that the Welsh Government itself doesn’t decide how much money it gets. The Welsh Government 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. And the Welsh Government then can decide, and has decided, that it needs then to reduce spending.”
Despite the lack of help from the NHS, Chase’s family have raised enough money and she has had the operation at Frenchay Hospital in Bristol. Surgeons there carried out a procedure to try to improve the spasticity and pain in her legs. They performed keyhole surgery where they cut two thirds of the nerves in her legs, to help release the tension because it’s the overactive nerves in Chase’s spine that cause the spasticity in her legs. That has been followed by weeks of intensive physiotherapy at the hospital, which she responded very well to.
But there is still little evidence about how well the procedure can maintain improvements in the long term.
That’s why the team at Frenchay 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; she says “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.”
But without funding for the operation, children could be missing out on those benefits. 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. Spokesperson Cath Wilton says “We’ve got children who are suffering unnecessarily in the UK. They’re woken, 4 or 5 year old children, being woken at night with really painful muscle spasms and that’s a daily thing, it’s a daily occurrence, it’s what they live with. To think that this procedure could eliminate that for them is heart breaking really that it’s not available to everybody.”
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.” But the IPFR hasn’t funded a single case in Wales.
Helen says that’s frustrating. “We were in Frenchay with another family we made friends with and they were from Newcastle and they had had it paid for by their Trust. It is frustrating that we had to raise that. Hopefully they’re going to change what they’re going to do for Welsh children in the future.”
But for Chase the future is looking good. She had to have a secondary procedure to lengthen the tendons in her legs which had shortened because she was walking on her toes. It means she’s wearing temporary splints but will soon be walking unaided.
But that does come at a price, and with pressure on the health service increasing, there could be more patients like Chase without health funding in the future. Lisa Turnbull from the Welsh Institute of Health and Social Care says “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. So 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.”
Helen knows what she’d like to say to the government – “They need to look at Chase and see the huge improvement that it’s made to her and all the other children as well that have had SDR and definitely fund our children.”
If you missed the programme you watch it again by clicking the link http://www.itv.com/news/wales/topic/wales-this-week/