Specialist Neuromuscular Care and Treatments

Will Quince Excerpts

Tuesday 15th December 2015 Westminster Hall

[Ms Margaret Ritchie (South Down) (SDLP)]

It is a pleasure to serve under your chairmanship, Mr Brady. I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on securing this debate on a vital issue that affects many young people throughout the UK.

As the right hon. Lady said, neuromuscular diseases come in many different forms. In fact, there are about 60 different types of muscular dystrophy and related neuromuscular conditions, which makes it difficult for the NHS to provide clear-cut statistics on the number of people affected by such diseases. However, research undertaken by Muscular Dystrophy UK suggests that out of every 1 million of the UK’s population, approximately 1,000 children and adults are affected by such muscle-wasting conditions. On that basis, we can estimate that some 70,000 of our constituents, of whom approximately 2,000 live in Northern Ireland, are affected by those conditions.

Another way of totalling the scale of the issue is to look at the admission rates of those with neuromuscular diseases to accident and emergency departments. Muscular Dystrophy UK undertook work on that issue and found that in Northern Ireland in 2011, 787 people with a neuromuscular condition were admitted to A&E departments requiring emergency treatment, at an estimated cost of £2.2 million. Those figures are broadly in line with the GB average. There were 28,000 emergency admissions in the UK, at a cost of £81 million. Relying on the emergency services to fill the gaps in treatment for people with such conditions robs people of their independence and costs the NHS much more than a well-designed system that helps people to manage their conditions and avoids emergencies.

I am sure everyone in this Chamber is in agreement on this issue and wants the best possible treatment and care to be provided to people living with the effects of this cruel disease. Unfortunately, we are not there yet. There is still much work to do—in particular, on an issue that the right hon. Lady already referred to: Duchenne muscular dystrophy and the need for Translarna to be commissioned by NICE and approved by its guidelines. It is important that that happens, because Translarna is already in use in France, Germany, Italy and Spain. Families in those countries can use it, but families here are waiting for it.

[Will Quince (Colchester) (Con)]

One of my constituents has two sons with Duchenne. Does the hon. Lady agree that it is deeply regrettable that they are considering moving to France and commuting back to work so that their sons have the vital access to those drugs?

[Ms Ritchie]

I thank the hon. Gentleman for his intervention. I agree. His point illustrates that we urgently need a decision from the Minister. I hope the Minister provides us with some welcome information on that issue. It is deeply regrettable that families will go through Christmas not knowing for sure whether the drug will be approved. In the new year, NICE’s decision must not be delayed further. We must end the difficult wait of those families and children.

In Northern Ireland, there has been a commitment for more adult neuromuscular nurse specialists and adult neuromuscular consultants. I share the hope that, when combined with increased care adviser support, the new specialists will begin to improve our currently overstretched services, although there are still valid concerns about how that can be carried out effectively in the context of broader reorganisation and funding scarcity. If we are to achieve the standard of care we all want, much more must be done to co-ordinate better and join up services to ensure patients with muscle-wasting conditions get the help they need efficiently and effectively.

Before I conclude, I want to mention one of my constituents, a lady called Michaela Hollywood, who is wheelchair-bound and was born with spinal muscular atrophy. She was born without ears and is permanently in a wheelchair. She is now 25 years old. She received a Points of Light award, and on Thursday last week she was with the Prime Minister when the Christmas tree lights were turned on in Downing Street. She is on the BBC’s list of the 100 most inspirational women. She received her undergraduate and master’s degrees from Ulster University, and she hopes to go back to do her PhD. She is a lady of immense capacity. She is a campaigner for young people like her with muscle-wasting conditions and, although she spends every day of her life in a wheelchair, she very much enjoys every one of those days because she is a constant campaigner with enormous zeal for life.

Michaela gave evidence to the all-party group on muscular dystrophy in the Northern Ireland Assembly for its report on specialist neuromuscular care. What she said is most important, because it highlights the need for joined-up Government thinking, whether here at Westminster and in the Department for Health or in the devolved Administrations. She said:

“There’s physiotherapy and hydrotherapy, trying just to cover everything. I do receive physiotherapy but it’s a tricky issue because when you’re under 18, with a neuromuscular condition, you have respiratory physio in the community; when you’re over 18 and in the community, with a neuromuscular condition, you’re with disability physios, even though you’re deemed as having a respiratory problem. So that I think is something that is a prime example of the disjointed care that we’re receiving. If we have one specialist multidisciplinary team…that would make things so much easier. If we had a physio that concentrated on neuromuscular diseases but also had experience within respiratory areas, that would make things easier. Also, if we had a cardiologist who pretty much had a good knowledge all round, that would help too.”

Michaela’s words make the case for a joined-up service better than any of us could, so I will end by simply reiterating her appeal for specialist multidisciplinary teams for the treatment of muscular dystrophy to be established. I call on NICE to make its decision on Translarna with the utmost urgency. I hope the Minister will give us some favourable answers to alleviate the distress that is felt by many people throughout the UK.