Specialist Neuromuscular Care and Treatments

Caroline Nokes Excerpts

Tuesday 15th December 2015 Westminster Hall

[Caroline Nokes (Romsey and Southampton North) (Con)]

As ever, it is a pleasure to serve under your chairmanship, Mr Brady. I pay tribute to my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan), who secured this important debate today. It is on a recurring theme which she brings us back to time and again. Not only does she work tirelessly to highlight the case of her constituent, Archie Hill, but she is extremely knowledgeable, so I will endeavour not to repeat any of her comments because I want to give other Members the chance to contribute.

Like my right hon. Friend, I have a constituent who suffers from Duchenne muscular dystrophy. Jagger Curtis is a pupil at Romsey Abbey primary school and is just eight years old. I have highlighted Jagger’s case in this Chamber before and I have raised it twice at Prime Minister’s questions, but, like Archie, Jagger is still waiting for an answer on whether he will be allowed to have Translarna. I will focus briefly on the issue of treatment, but mainly I want to echo my right hon. Friend’s calls, asking when families such as Jagger’s can expect to be notified of guidance from the National Institute for Health and Care Excellence on access to Translarna.

I know the Minister is aware of the time sensitivities of access to this drug—it has to be prescribed while the patient is still mobile—so I ask him to consider meeting me and my constituents, Jules Geary and James Curtis, who are Jagger’s parents, to discuss how the process might be accelerated. It might not necessarily be accelerated now, for their son, but it should be for the other hundred boys who will be diagnosed with Duchenne muscular dystrophy every single year. We have been waiting many months for a decision on Translarna, and every deadline appears to result in a decision to prolong matters further. There are concerns about the clinical trial capacity for drugs developed to assist neuromuscular conditions; will the Minister please assure me that he is actively promoting the network of specialist muscle centres as a means to overcome that problem?

Other issues associated with Jagger’s care have also raised huge concerns. He has had to wait far too long for his specialist wheelchair, and there seems to be little understanding that the chair is a lifeline for Jagger and his parents. Last week he went on holiday to Tenerife, and his wheelchair arrived literally just in time—the very day before he went on holiday—despite the fact that it was ordered back in May. The hon. Member for York Central (Rachael Maskell) referred to the fact that children grow and change, and their needs change. It seems to be an absolute tragedy that a child can wait all those months, and then by the time the chair arrives the danger is that it will no longer be correct for their condition.

Jagger still has his mobility, but his parents have done an arguably very difficult thing in making sure that he has that chair. Inevitably, as a child with a condition in which his muscles deteriorate, he tires really easily, so that chair is his lifeline and his access to continued mobility now and in future. He is still suitable for treatment with Translarna—he is one of the boys who has the nonsense mutation—but his family feels as though the clock is ticking very quickly.

Muscular Dystrophy UK has highlighted the problems with wheelchair provision throughout the country. Clinical commissioning groups are now responsible for commissioning wheelchair services. I am really conscious that in west Hampshire there have been delays for many people, not just Jagger. For those with neuromuscular conditions, as the hon. Member for York Central said, it is all about getting the right chair at the right time. It can be particularly devastating for children to have to wait for a chair that enhances their freedom.

I recently saw that Jagger’s mother had posted on Facebook a picture of him proudly showing off his new chair. However, it also said that the family had launched a GoFundMe page to buy a powered sitting and standing chair to enable Jagger to live his life as fully and actively as possible. It is heartbreaking that they are trying to fund that through GoFundMe because they do not have the confidence that the CCG is going to provide that sort of facility for them.

In the south-east we lag behind the rest of the country in the provision of neuromuscular care and adviser support. As we have heard, there are two specialist treatment centres in London and one in Oxford. That is a two-hour journey for a child in a wheelchair, coming via Waterloo, and his parents tell me that it is incredibly difficult for them to do that whenever Jagger needs to come to London for treatment. There is also a problem with specialist guidance. These families are looking for support—they need support, advice and information.

We are lucky that in Romsey we have brilliant GPs, but Jules Geary told me the tale of trying to get Jagger diagnosed. As a first-time mum, she was often dismissed as a worried mother, when in fact she was the one who knew her son best and knew that there was a problem. I do not blame the GPs at all, because if 100 boys are diagnosed every year, one would not expect a GP in Romsey to see it very often. It was not until James read an article in the Daily Mail about Duchenne muscular dystrophy that he pointed his finger and said, “Those are the same symptoms that Jagger has.” They took that article to the GP, and it was only then that the specialist tests were done on Jagger.

I know that we keep returning to this subject, but that is because it is important. It is right that we keep returning to it. Quality of life, especially for children, is crucial. I hope the Minister will look round this Chamber this afternoon and hear the cross-party and apolitical calls for help for those with such conditions, and I hope he will address some of the points that we raise.