During my time as Health Correspondent at ITV Wales I was contacted by several parents who had children with Cerebral Palsy because they wanted publicity for their campaigns to raise money for their little ones to have a potentially life changing operation.
The procedure called Selective Dorsal Rhizotomy, or SDR, can help to reduce spasticity in the legs. That not only helps the children who have it to walk better, but more importantly, it also releases tension in their bodies so they’re no longer in pain.
The problem for these patients is that this operation is not available on the NHS. The regulatory authority NICE says the procedure is safe and does have benefits, but as it’s still a relatively new procedure its not known how long the effects will last and that means they can’t recommend it be paid for by the health service on financial grounds.
As a result parents who want their child to have SDR are having to raise around £40,000 to pay for the operation and the intensive physiotherapy that is needed after. Many of them are frustrated they have to do this, particularly as their time is already taken up caring for a child with special needs. That’s why they’ve been lobbying the Welsh Government to pay.
I wanted to know what it was like for these families and find out more about the reasons for not funding the procedure on the Health Service. So last winter I spoke to a lady from Monmouth called Helen Morgan and her wonderful daughter Chase, who agreed to be filmed for a Wales This Week programme.
Helen has been tirelessly fundraising since August 2013 for 7 year old Chase to have this potentially life changing operation at Frenchay Hospital in Bristol. With the help of family and friends she reached her target this spring and in June her daughter was admitted for major spinal surgery. Helen gave my team and me exclusive access to the operating theatre and Chase’s rehabilitation afterwards because she wanted Chase’s story to be heard.
Her experience does have to be put in context – government budgets are tight and the Health Service is looking to save money, so decision makers have a difficult task trying to decide where funds are spent. The pot of money isn’t endless which means new operations without long term statistical data are among those that aren’t available on the NHS.
As a result, there were moments when I was editing the footage that I found myself welling up, not only at Chase’s story but at the stories of all the families who agreed to take part – it was hard not too. But as someone who has spent so much time reporting on the Welsh Health Service, I do recognise the financial constraints.
I hope that by watching the programme you’ll be able to make up your own minds about whether or not the operation should be funded here in Wales.
No matter what conclusion you come to though, I think there is one thing that everyone will agree on. The people I spoke to, on both sides of the argument, all show determination and have the courage of their convictions.
The programme I’ve produced “Wales This Week: One Small Step” will be on ITV Wales at 8pm on Monday 9th September, presented by Jonathan Hill