BEHIND THE HEADLINES: Why won’t NHS fund life-changing op?
6:10pm Tuesday 25th March 2014 in News
Behind the Headlines - Bayli Lippiet. Pictured is Bayli Lippiet at home in Fleur de Lys, near Blackwood. (4795683)
MORE than 20 children from Wales have undergone radical surgery - most of them in the USA - to help overcome problems that severely restrict their mobility and balance. Health reporter ANDY RUTHERFORD reports on a parent-driven campaign that is seeking to get the treatment, called selective dorsal rhizotomy (SDR), available on the NHS.
EVERY passing month brings an increase in the number of families in Wales embarking on major fundraising efforts to pay for selective dorsal rhizotomy (SDR) to help their children walk.
In the past four years, the profile of this radical and controversial treatment has grown steadily through word-of-mouth and, increasing numbers of parents would argue, as the evidence has grown of its success in helping children overcome often severely restrictive mobility problems.
SDR was pioneered in Missouri, in the USA, by paediatric neurosurgeon Dr TS Park, and it is to the hospital he practises at in St Louis that the majority of children from Wales, including several from Gwent, have been taken when their parents have managed to raise the necessary funds.
An overseas solution has been sought by the majority because the NHS in Wales does not fund SDR. A handful of hospitals in England, and one in Scotland, have been offering different forms of SDR for a few years, and a couple of Welsh children have had their operations over the border, again after their parents have raised the money to pay for it.
Anyone embarking on the fundraising route faces a daunting task however, for SDR does not come cheap.
In recent times, the Argus has featured the stories of several children, whose parents have set out to raise sums varying between £40,000 and £60,000 to enable their children to have SDR treatment.
Sue Hurrell, a founder of pressure and support group Support4SDRWales, estimates more than £1 million has been raised by those opting for their children to have SDR.
“We know of 21 children in Wales who have had SDR, 19 of them in St Louis. Overall, 37 have either had SDR or a pre-operation assessment,” she said.
“It’s a crude measure, but if all the families who have paid for the surgery have raised say, £50,000, that’s more than £1m, and there are others still fundraising.”
Children undergoing SDR have cerebral palsy that causes spasticity, which in leg muscles, depending on its extent, can severely restrict their ability to walk. If able to walk, many can do so only with the aid of a walking frame.
The form of SDR pioneered by Dr Park involves cutting some sensory nerves. It is not a cure and healthcare regulators in the UK remain concerned about its long -term value and outcomes.
The National Institute for Health and Care Excellence (NICE), the UK’s treatments regulator, considers that research and measurement of long term outcomes is required.
Support 4SDRWales is seeking to persuade those healthcare regulators in Wales to recognise the benefits parents are seeing in their children post-SDR, and Mrs Hurrell believes progress is being made.
“I believe that largely through the pressure we have put on the NHS in Wales, it will take part in an English-led project through a process called Commissioning Through Evaluation, which involves an evidence-based study for two years, and Wales will fund around five children a year (to have SDR) as part of that.
“It is definitely a step in the right direction, though we are concerned they will only pick children who are in the middle of the range, and who are most likely to benefit.
“It is progress, but there will still be a huge need for families to fundraise to go to St Louis.
“There is still a long way to go, but we are definitely getting some momentum, because children who have gone are doing so well, and they and their families are working hard in post-op physiotherapy and training.
“We also live in the age of social media and parents who are Facebook members can see child after child who have had SDR, they can see videos of children’s progress, and they can contact each other.
“Also, families often have better information and evidence, whilst professionals are looking at research papers and these are hard to come by (regarding SDR).”
l Selective dorsal rhizotomy involves the cutting of some sensory nerves carrying information and instructions between the brain and leg muscles.
The aim is to disrupt the messages that trigger spasticity or tensions in leg muscles, and there is also scope to improve mobility, balance and body position, though the benefits are also dependent on physiotherapy and other treatments on a long- term basis.
The procedure developed by Dr Park in Missouri is considered more radical than versions of SDR – which has been around for more than a century – that have been performed in a handful of hospitals in the UK, mainly in England.
Dr Park came to Cardiff last weekend, attending a party organised by Support4SDRWales for children who have had or will have SDR, and their families.
He told the Argus he is pleased to see the children doing well, and he stressed the importance of post-operative physiotherapy.
“We start the ball rolling for them, and they continue to improve when they come back to the UK,” he said.
Kath Lippiett, whose son Bayli, aged five, had his SDR operation in St Louis in June 2012, said he is doing “really well.”
“From crawling and walking two or three steps in his walking frame before getting tired and feeling pain, he’s now walking independently everywhere,” said Mrs Lippiett, who with husband Darren embarked more than two years ago on a £60,000 fundraising effort to send Bayli to be treated by Dr Park.
“The only place he uses a frame is school, because the playground is on a slope.
“He has to do lots of strength and conditioning work, but he’s in full time school and loving it.
“We didn’t think he would be able to go to mainstream school because he had a lot of difficulties but SDR has been life changing for him.
“He can walk quite a long distance on his own, and he’s a lot more independent.”
Other Gwent youngsters who have undergone SDR following fundraising campaigns are six-year-old Brecon Vaughan, from Mathern; Chase Vaughan, seven, from Monmouth; and three-year-old Leo Dixon, from Newport.
Leo’s mum Kate said she has noticed huge changes in her son since his operation last November, including improved posture and strength.
Recently back from Missouri too, is three-year-old Maisie Cooper from Cross Keys, whose parents Gareth and Hayley said she is progressing faster than expected, with doctors predicting she could walk independently in the next six to 12 months.
“She is getting stronger each day,” said Mr Cooper.
“She has about four hours of physio each week, and she is still on track to becoming mobile independently by the end of the year.”
l The NHS in Wales, and in England, does not routinely commission selective dorsal rhizotomy , due to concerns over a lack of clinical evidence to support it.
NICE meanwhile, considers SDR to be effective, but with the potential for complications.
It also believes four to 10-years-old is the optimum age range for treatment, though some Welsh children who have gone to the USA have been younger.
“The National Institute of Care Excellence’s (NICE) guidance does show some evidence of effective treatment, but requires further research regarding the long-term outcomes, a view which is concurred with by the Welsh Government,” said a spokesman for the Welsh Health Specialised Services Committee (WHSSC), which funds treatments not available in Welsh hospitals.
“NHS England has currently stopped commissioning SDR and has announced a Commissioning Through Evaluation process, recently introduced, which will assess the effectiveness of SDR.
“Wales will join the Commissioning Through Evaluation process and the WHSSC is currently in discussions with NHS England regarding the development of the plans for evaluation.
“Although SDR will not become routinely available, a few patients will be eligible who meet the specific criteria.
“SDR is a highly specialised procedure and it is unlikely that the surgery will be delivered in Wales as the required throughput of patients is not likely to be achieved to maintain the skill level.”
Comments are closed on this article.