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Selective Dorsal Rhizotomy

Volume 543: debated on Wednesday 18 April 2012

Motion made, and Question proposed, That this House do now adjourn.—(Mr Newmark.)

A couple of years ago, like every other candidate in the general election I was eagerly watching my local press—for me, mainly the Daventry Express—to see what stories were making local headlines. In the run-up to the election, the Daventry Express and its sister paper the Northampton Chronicle and Echo both rather brilliantly covered the story of Holly Davies, a young girl from Daventry who was suffering from cerebral palsy and whose family were raising £40,000 so that she could go to America for a life-changing operation that would enable her to walk freely for the first time in her life. A few months later Holly, who could barely walk before the operation, returned from the St Louis children’s hospital a completely different girl. The procedure she had is called selective dorsal rhizotomy, or SDR, and Holly was operated on by the world’s leading expert surgeon in this field—Dr Tae Sung Park.

Dr Park is without doubt one of the world’s leading paediatric neurosurgeons, has received a host of honours for his surgical innovations and clinical research, and has literally been the pioneer in this field. St Louis school of medicine in Washington university, where Dr Park is the Shi Hui Huang Professor of Neurological Surgery, is ranked third in the US, while the St Louis children’s hospital is ranked fifth in the US for overall performance in medicine. Those world-leading institutions would not allow the SDR operation to be practised if it did not work or if it had significant complications. They know that it works. Indeed, SDR is so successful that every single medical insurance policy that can be bought in the States covers the procedure because it is realised that spending money up-front on these individuals saves a great deal more expense in the future—a point I wish to heavily underline in this debate.

Dr Park has operated on people from 48 different countries and a number of those countries have trained or are training surgeons to offer this procedure. Indeed, SDR is currently performed in Germany, Sweden, the Netherlands, Italy, Poland, Korea, Japan, Hong Kong, Canada and Mexico. As of 30 March 2012, 145 people from the United Kingdom have been operated on in St Louis—120 from England, 18 from Scotland and 7 from Wales.

So what is this miracle operation, selective dorsal rhizotomy? Of all the surgical procedures currently performed on patients with cerebral palsy, SDR has probably undergone more thorough scientific scrutiny than any other, including the various types of orthopaedic surgery. Accumulated evidence and my constituent’s experience indicate that SDR is an excellent option for selected patients with spastic cerebral palsy.

SDR involves the sectioning, or cutting, of some of the sensory nerve fibres that come from the leg muscles. There are two groups of nerve roots that leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscles and the dorsal spinal roots transmit sensation back from the muscles to the spinal cord. In the operation, the neurosurgeon divides each of the dorsal roots into between three and five rootlets and stimulates each electronically. By examining the electromyographic responses from muscles in the lower extremities, the surgical team can identify the rootlets that have caused the spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact, which reduces the number of mixed messages from the muscles, resulting in a better balance of activity in the nerve cells in the spinal cord and thus reducing spasticity.

Let me tell the House what that means in human terms. Last year, I was fortunate enough to meet for the first time Holly’s mum, Jo Davies, who wanted to talk to me about Holly’s new post-operation life. I shall read a few lines from “Holly’s Diary” a few years after her operation:

“September 2011—and Holly is starting school. She has her school shoes, bought from Clarks, not from Northampton General Hospital—and she loves them! It is such a small thing, but something I really never thought she would be able to do. I used to worry about school shoes—I know this sounds silly but the NHS would only give you one pair of boots at a time and this was either going to mean her having pink boots for school or black boots for home. Not very fair on a little girl—but now we don’t have to worry. She is wearing normal school shoes, has flashing trainers for the weekend and now even has a pair of ‘Ugg’ boots!

We recently posted a video of Holly on her Facebook page as people were asking how she was doing. It isn’t until you watch the before and then after videos that you see the amazing progress she is making. Dr Park even commented on her video and was really pleased with what he saw and has assured us that more improvements will be seen in the next 3 months.”

May I draw to my hon. Friend’s attention the success of the operation for my constituent Dana Johnston, and encourage him to commend the work that she and her family have done with Support4SDR to campaign on the issue?

I happily commend their work. I have met Dana and her mother—a very powerful lady who has fought hard for her daughter’s rights and saved a lot of money so that she could have the procedure.

To return to the diary:

“Just these last couple of days she has started to learn to run. Prior to SDR her running technique was no faster than my normal walking pace and she had a swing to her hips that made it look like she would trip at any moment. I now need to walk very fast and sometimes even jog to keep up with her run and she has less swinging of the hips. She is still a long way off the speed and ability of her friends when it comes to running but she is definitely getting better at it.”

The next point is very important:

“Holly has also grown in confidence. She speaks out at school, joins in with activities more and is a nightmare at the park. She climbs up climbing frames that even her 7 year old sister would be wary over. It really is hard to believe that without the operation she would not be able to do these things.”

I am very pleased about the successful outcomes for the hon. Gentleman’s constituent and for the constituent of the right hon. Member for Carshalton and Wallington (Tom Brake). Billy Douglas is three years old and lives in the village of Ballygowan in my constituency. Unfortunately, he has not yet had the operation but is trying to get it. Does the hon. Gentleman agree that it is not just a question of the operation, but the physiotherapy as well? It is a nine-month process and it is very important. Does he think that the NHS ought to make provision not only for the operation but for the physiotherapy? Families are asked to provide £50,000 for the operation and the physiotherapy, but that is beyond the budget of many people. Even with fundraising events it is almost impossible to reach that amount unless the Government or the NHS are prepared to help. Does he agree that we need compassion and financial help for many families across the whole United Kingdom?

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?

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?

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.

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.

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.

I congratulate my hon. Friend the Member for Daventry (Chris Heaton-Harris) on securing the debate and bringing this very important matter to the attention of the House. The contributions of other hon. Members demonstrated just how strongly people feel about the issue. He outlined with great clarity the huge impact on the lives of children and of their families. Such debates are often prompted by casework but, interestingly and quite rightly, they can be prompted by the diligent work of local journalists reporting in the local press, which is testament to the importance of our local papers.

As my hon. Friend is aware, cerebral palsy is a brain condition that affects movement, posture and co-ordination. It might be seen at or around the time of birth or might not become obvious until early childhood. Some children will have lower limb spasticity, which can cause problems with walking and sitting, as well as discomfort, cramps and spasms. Sadly, there is no cure for cerebral palsy and as no two children are exactly the same, which means that they will not be affected by cerebral palsy in exactly the same way, treatment programmes vary widely.

Occupational therapy, speech therapy, medication and surgery all have a role to play in reducing the impact of the condition, but, because all children with cerebral palsy have movement problems, physiotherapy, to which the hon. Member for Strangford (Jim Shannon) referred, is undoubtedly the bedrock of the condition’s good management.

NHS physiotherapy services, including post-surgery physiotherapy for children with cerebral palsy, are provided on the basis of assessed clinical need, but initiatives such as the self-referral-to-physiotherapy pilots, the allied health professional referral-to-treatment revised guide and the AHP service improvement project are all supporting improvements to access and outcomes, and I will certainly look further at the point that my hon. Friend made about ensuring the provision of such access, when treatment has been delivered outside the NHS, so that people receive the appropriate aftercare.

My hon. Friend also made powerful references to several cases and, in particular, to the one from his constituency, that of Holly Davies, whose life, from my hon. Friend’s own testimony today and from her diary entries, has clearly been transformed by undergoing selective dorsal rhizotomy, SDR, under the care of Dr Tae Sung Park—whom my hon. Friend rightly described as one of the world’s leading paediatric neurosurgeons—at St Louis children’s hospital in Missouri.

Dr Park and his colleagues have pioneered the use of this procedure, which has benefited many thousands of children from throughout the world. We also heard today how Holly’s family have worked tirelessly to raise both awareness of the procedure and the funds to send their daughter to the USA to receive the treatment, and I can well understand the frustration, expressed by hon. Members in this debate, at the sense that the NHS might in some way be denying people access to the procedure.

Of course, those of us who are parents—even those of us who are not—want the best for our children, and in many cases SDR has been shown to improve a child’s comfort and quality of life. Even the simplest day-to-day tasks, such as standing and walking, can be made easier due to the increased flexibility in their limbs, so SDR is a major surgical procedure that aims to reduce the amount of information, as my hon. Friend rightly described, that the sensory nerves carry. As he also said, after the procedure patients need long-term physiotherapy and aftercare, and it is important to ensure that such continuity of care is part of the service that they receive.

The current technique, in which only those nerve rootlets that contribute most to the spasticity are divided, was introduced as far back as 1978, but it is important to stress that SDR is not a cure for cerebral palsy, nor is it suitable for the treatment of abnormal movements or of balance problems. Indeed, it is suitable only for appropriate children, as Members have acknowledged in this debate, after assessment by clinicians. It is therefore unlikely to be suitable for other types of cerebral palsy.

As my hon. Friend will be aware, the Department does not make central decisions or directions on the funding of treatments; it is for local commissioners to decide whether to approve funding for treatments, based on proper consideration of the clinical evidence and—it is important that I stress this—the patient’s individual circumstances.

Given that the Minister and the hon. Member for Daventry (Chris Heaton-Harris), who opened the debate, have identified that a relatively small number of children would benefit from SDR, what role will specialist commissioning or, indeed, the NHS Commissioning Board play in looking at treatment throughout the whole country for those young people?

My right hon. Friend makes a rather important point. One of the opportunities that the Health and Social Care Act 2012, which we have taken through the House, provides is through the establishment of the NHS Commissioning Board. For the first time, all specialised commissioning will be done in one place and at one level, and, although no decisions have yet been made about the area under discussion, it is one of many, involving rare conditions or where specialist expertise needs to be brought to bear, in which the board can contribute to driving improvement.

Parliament has given the job of assessing the clinical evidence to the National Institute for Health and Clinical Excellence in order to provide clinicians with guidance on the safety and efficacy of procedures. NICE does so through its interventional procedures programme, which is different from the more recently published guidance, to which I shall turn in a moment. NICE’s interventional procedures guidance protects patient safety and supports people in the NHS in the process of introducing new procedures. Many of the procedures that NICE investigates are new, but it also looks at more established procedures of the sort that we are discussing and at issues of safety and how well procedures work. By providing guidance on how safe procedures are and how well they work, NICE makes it possible for new treatments and tests to be introduced into the NHS in a responsible way. NICE’s interventional procedures guidance has a slightly different, but equally important, purpose from that of its other guidance products. Interventional procedures guidance does not provide advice on whether treatments are clinically and cost effective, but it does provide advice on whether such procedures are safe and efficacious enough to use in clinical practice.

As my hon. Friend said, NICE published its updated interventional procedures guidance on SDR for spasticity in cerebral palsy in December 2010 in the light of the emerging evidence base from this country and around the world. NICE’s guidance states that the procedure may be used provided that normal arrangements for clinical governance and audit are in place. While the evidence suggested that the operation can improve the comfort and mobility of some people who have cerebral palsy, it was recognised that there are none the less serious risks that would have to be mitigated and managed as part of the procedure, not least in relation to harm to bladder function and walking ability. NICE was clear that if appropriately trained health care professionals wish to offer this treatment, they must fully explain to the families what is involved and that further surgery and intensive aftercare may be needed. NICE is also aware that the surgical techniques used within this procedure are still evolving, and that is why it has made recommendations about further ongoing research, although my hon. Friend made a very powerful case about the evidence base that has developed in the United States over many years of the treatment’s use in that country.

My hon. Friend will be interested to know that NICE is currently developing clinical guidelines on the management of spasticity in children and young people that will provide guidance to the NHS on whether SDR represents a clinically and cost-effective use of NHS resources. NICE consulted on the draft guidance last October. The draft guidelines explained that the available evidence for the procedure shows that it is most likely to be effective in children with particular symptoms, but that the evidence of sustained benefit was not currently available or weak. That is another area where it says that there is a need for research.

I assure my hon. Friend that I will ensure that this debate is provided to the decision makers within NICE so that they can see the additional material that he has brought to the House’s attention and the contributions of other hon. Members. That is very important. I hope that others who are championing this cause have taken the opportunity to respond to the consultation on the draft guidance. I understand that the final version of the published guidance will come out in June this year.

My hon. Friend referred to the work of Kristian Aquilina in Bristol and touched on the work of Support4SDR. I strongly commend the work that both are doing to raise awareness of SDR as a treatment. I know that in December they had a very productive meeting with officials from my Department, not least Dr Sheila Shribman, the national clinical director for children and young people. I gather that the meeting was useful and that a number of avenues were set out for further pursuit and exploration. Throughout the health and social care system, more information for patients and their families and clinicians can help to ensure that more informed decisions are made. The key challenge for Mr Aquilina and Support4SDR will be to increase the awareness of SDR as a possible treatment for some children with cerebral palsy. At the meeting, a number of possible avenues were suggested, not least engagement with the Royal College of Surgeons, working closely with the Council for Disabled Children, and updating the relevant section of the NHS Choices website. My officials stand ready to continue to engage and to work with those wishing to pursue this.

The issues spoken of tonight are very important because of the impact that cerebral palsy can have on children and their families and the hope of a better future that can be offered by appropriate treatment, which, for some children, might mean SDR. Raising public awareness about the procedure is undoubtedly part of what tonight’s debate has done. I commend my hon. Friend and others for contributing to that and for continuing to do so beyond the debate. I hope that the debate will be a contribution to NICE’s deliberations.

Clearly, promoting SDR as a safe procedure for appropriate children can be done only at a clinician-to-clinician level, so I urge my hon. Friend and others to continue to work with Support4SDR and Mr Aquilina carefully to document and spread the results of this surgery. The compelling stories of those mentioned in the debate, whether it be Holly, or Dana—the constituent of my right hon. Friend the Member for Carshalton and Wallington (Tom Brake)—or Finlay, or many others, all bear testament to how this can make a difference to people’s quality of life. I look forward to seeing the work that is produced by NICE and others in the coming months.

Question put and agreed to.

House adjourned.