Selective Dorsal Rhizotomy

Jackie Doyle-Price Excerpts

Wednesday 18th April 2012 Commons Chamber

[Chris Heaton-Harris]

I thank my hon. Friend for that intervention. I will come to that, but I entirely concur. The earlier the problem can be tackled, the better, in general terms.

As I mentioned previously, the global medical community gradually became aware of Dr Park’s superb work in St Louis. Here in the UK, on 3 May last year, the very first UK micro-neurosurgical SDR was performed in Frenchay hospital in Bristol. Kristian Aquilina, the consultant neurosurgeon, and his team carried out this operation. Towards the end of last year, I took Mr Aquilina and some parents whose children have benefited from SDR, including my constituent Jo Davies into the Department of Health for a very helpful meeting with a couple of the Minister’s officials, in a bid to encourage the NHS to offer SDR here in the UK. The hope is that there would be three or four centres of excellence that could offer the operation to those patients who had been evaluated as able to benefit massively from the procedure.

From speaking to Mr Aquilina, I know that he has now set up a multidisciplinary team at Frenchay hospital to evaluate and select children for SDR. This team consists of a number of people—a paediatric physiotherapist with special expertise in cerebral palsy, a paediatric neurosurgeon, a paediatric orthopaedic surgeon and a paediatric neurologist. Mr Aquilina tells me:

“Children over four years of age, with a diagnosis of spastic diplegia following premature birth, should be considered for SDR. Children with typical spastic diplegia, whether born prematurely or at term, should also be considered. These children tend to have delayed motor development and spasticity interferes with their progress.”

I am also aware that another surgeon, Mr John Godden, from Leeds has been out to St Louis to learn about the procedure and is ready to undertake his first operation.

One of the common causes of cerebral palsy is premature birth and there is now extensive evidence, recognised by NICE, that demonstrates the value of SDR for these children. The NICE guidelines for SDR were issued in December 2010 and concluded:

“The evidence on efficacy is adequate. Therefore this procedure may be used provided that normal arrangements are in place for clinical governance and audit.”

But a more recent guideline focused on the lack of long-term studies of outcome and changed the first NICE guidelines, recommending that SDR be done in the context of clinical research. The problem with that is that a long-term study for, say, 10 or 20 years after surgery, costs an awful lot of money, and because no long-term study has been done on any of the non-surgical and surgical treatments currently employed here in the UK, following that rationale to its logical conclusion would mean that this successful proven treatment for cerebral palsy cannot be covered by the NHS for years.

[Jackie Doyle-Price (Thurrock) (Con)]

I commend my hon. Friend for the eloquent way he is making the case for the procedure. I have two cases in my constituency where the local community has come together to raise £40,000 each time to fund the treatment. On the point that my hon. Friend is making about the need for long-term trials, surely all NICE needs to do is to look at those children and how their lives have been transformed by that procedure.

[Chris Heaton-Harris]

I absolutely agree. In the United States, SDR has been practised since late 1986. Dr Park has been performing the operation since May 1987. SDR is currently performed in many medical centres across the US and has undergone unprecedented scientific and clinical scrutiny by orthopaedic surgeons, neurologists, rehabilitation medicine practitioners, therapists—the lot. At this time, medical evidence shows that SDR is more robust than any other treatment for cerebral palsy. It is the only treatment that can reduce spasticity permanently and that enables patients to move better and thus allows them to exercise as they grow, which anyone with spasticity cannot do. SDR at an early age reduces the rate of orthopaedic surgery and there are many other proven benefits.

SDR is safe. Of Dr Park’s 2,300-plus patients, only two have developed spine problems and three have had spinal fluid leaks that needed surgical repair. None has developed neurological complications such as paralysis or loss of bladder control. Some of Dr Park’s patients who had SDR 20 or 25 years ago are now in their mid-40s and not one patient has returned to him with late complications.

The purpose of the debate is to ask the Minister, his Department, NICE and the commissioners of procedures in the future to look at the success of SDR elsewhere in the world and help those practising it in the UK to overcome any of the remaining hurdles so that it can be performed on the NHS without problems or charge.

Children suffering from cerebral palsy in the UK are invariably given a frame for the first four or five years of their life and are then given a wheelchair when it becomes too difficult for them to walk with the frame. SDR can enable many of those wheelchair-bound children to walk independently, sometimes for the first time. An excellent example of this is a constituent of my right hon. Friend the Member for Carshalton and Wallington (Tom Brake), Dana Johnston, whom I had the pleasure of meeting very recently and who used a wheelchair 90% of the time before she had the SDR operation. Now, eight months after that operation, Dana does not use her wheelchair at all and is looking forward to a future of walking everywhere and living as close to a normal life as possible.

SDR would not be a very common operation, but it would change those who undergo the procedure from being recipients of taxpayers’ money via the NHS over a protracted period—in fact, for their lifetimes—to being active, tax-paying members of society in the future.

In Chichester, a friend of a friend is trying to raise £24,000 so that his grandchild, Finlay Fair, can be operated on by Mr Aquilina in Bristol. Indeed, Finlay’s financial target has nearly been reached and if all is well he will be operated on later this month. As I mentioned earlier, in the past three years or so 145 parents have raised the £40,000 and more required to get their children SDR in St Louis. I completely understand that the NHS, the Department of Health, NICE and any future commissioning body will all have procedures and processes that need to be followed, but surely it is now time for us to say that this life-changing, well-researched operation should be funded across the country by the NHS. We have surgeons with the expertise, an operation with a long-track record of success and children who could be walking and running independently, rather than being consigned to a life in a wheelchair.

I ask the Minister for whatever support he can give to ensure that SDR is offered by our excellent national health service so that in the future the parents of remarkable children such as Holly Davies, Dana Johnston and Finlay Fair as well as those given as examples by my colleagues do not have the burden of having to raise large sums of money to pay for their children to have this amazing, life-changing operation.