Selective Dorsal Rhizotomy

Jesse Norman Excerpts

Wednesday 18th April 2012 Commons Chamber

[Chris Heaton-Harris]

I absolutely concur. Indeed the final paragraph I wanted to read from “Holly’s Diary” states:

“Finally—we are continuing with Holly’s strict physio programme. She has 1 hour a week from the NHS and we pay privately for a further 2 hours a week from different therapists.”

As we have just heard, for the best results from SDR the operation must be followed by intensive physiotherapy. As an aside, one thing that all the parents who have raised the money for their child’s operation have in common is the basic lack of interest in the patient from the NHS when they return home from abroad, especially when they try to get regular physiotherapy to ensure that their children benefit from the operation to the maximum extent possible. Essentially, the more physio a patient receives in the first years after the operation, the greater the level of ongoing success and the level of manoeuvrability in the patient. Can the Minister help to remedy the situation?

[Jesse Norman (Hereford and South Herefordshire) (Con)]

I congratulate my hon. Friend on securing this debate. Is he familiar with the case of young Ellis Jones in my constituency, who has just returned to the UK after his family raised an extraordinary £45,000 to fund what appears to be highly successful SDR surgery with Dr Park in St Louis? I pay tribute to Ellis and his family, to the generosity of the communities around them, and to the Hereford Times, which led the way in gathering local publicity and support. Ellis is just two years old. Does my hon. Friend think there may be a case for extending the current treatment under NICE guidelines to include suitable children as young as two years old?

[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.