Specialist Neuromuscular Care and Treatments

Jim Shannon Excerpts

Tuesday 15th December 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to speak in this debate. It is always a pleasure to follow the hon. Member for South Down (Ms Ritchie), who made an impassioned plea on behalf of her constituent. Every one of us has constituents who suffer from Duchenne muscular dystrophy and other diseases and problems, so it is always good to make a plea on behalf of them in this Chamber. As always, it is good to see the Minister and the shadow Minister here.

I congratulate the right hon. Member for Chesham and Amersham (Mrs Gillan) on setting the scene for us all. She clearly outlined the issues, and asked questions of the Minister that we all endorse and support. I thank all other Members who have spoken. I am my party’s spokesperson on health, and I hope to find out about promising developments on the mainland that can be taken back to Northern Ireland, and that thoughts from Northern Ireland can be explained to the Minister. Perhaps the combination of the two can help us to look forward together, in ways that are to our advantage.

As other hon. Members have said, there are some 60 different types of neuromuscular condition, and it is estimated that around 60,000 to 70,000 people in the UK live with neurological conditions that affect their muscle function. Duchenne muscular dystrophy has been mentioned in particular. A couple of my constituents have that condition, and I am aware of the issues. At an event at the Methodist central hall across the way, people with the condition from across the United Kingdom of Great Britain and Northern Ireland clearly explained their needs, the issues—such as the massive advances in medical technology—and the best approaches. There are different levels of Duchenne, and what is medicine for one may not be medicine for another; that is the point I am trying to make.

In Northern Ireland, an estimated 1,600 people in the Southern Health and Social Care Trust area alone are diagnosed with neurological illnesses each year. That is equivalent to the number diagnosed with a major cancer; the conditions we are debating are of as great a relevance as some better-known ones. An estimated 34,000 people in Northern Ireland suffer from a disabling long-term neurological or neuromuscular condition such as epilepsy, multiple sclerosis, Parkinson’s disease, or one of the rare disorders such as motor neurone disease or muscular dystrophy, including Duchenne muscular dystrophy. Neurological symptoms such as headaches are one of the most common reasons for seeing a general practitioner, and they account for up to 8% of emergency department visits.

Last year, a new dedicated out-patient centre for neurology, with some responsibility for neuromuscular issues, was opened in Northern Ireland. That has been a positive development in the Province, helping with the nationwide momentum for access to treatment, and better treatment, for those living with neurological conditions. The new facility helps us to move towards meeting some of the latest standards in caring for people with long-term neurological and neuromuscular conditions. Since it opened, feedback has been very positive. Improved access to a modernised facility makes life much easier for patients and greatly improves their overall experience of their care.

I understand that the proposed multidisciplinary team will include neuromuscular consultants, neuromuscular physiotherapists and speech and language therapists, along with other care professionals. One of the key service outcomes, which I welcome, is that all patients with long-term neurological conditions have an individual care plan. The hon. Member for Romsey and Southampton North (Caroline Nokes) commented on access to wheelchairs; it is important for each individual to have a wheelchair that suits them. That might seem a small thing to some people, but to the patients it is massive. With 60,000 to 70,000 people in the UK living with neurological conditions, we must take those conditions seriously and prioritise our responsibility to those living with them.

A landmark decision could end the agonising wait for the delivery of the treatment that we are talking about to all those eligible to benefit in England, Wales and Northern Ireland. For those in Northern Ireland who benefited from the dedicated out-patient service I mentioned, I am sure this would be an additional boost. Nationwide, the momentum is now in favour of those living with neurological conditions. That may not always be how it feels, but there is a step forward, and we have to look at that, and at how to deliver that better. Although the move is very well intentioned and welcome overall, concerns have been raised and reservations expressed.

I know that the Minister will respond to what has been said about the NICE conditions. Lately he seems regularly to make particular reference to NICE in responding to debates in Westminster Hall and the main Chamber, and I think that is what Members are interested in. There is a need for a specific NICE response. It has asked for further clarification from PTC Therapeutics of the degree of benefit that its drug Translarna provides in the treatment of a type of Duchenne muscular dystrophy. DMD is one of a group of muscular dystrophies, which are inherited genetic conditions that cause the body to produce too little dystrophin, a substance crucial for muscle functioning. Seeing some of the young patients who have the condition focuses one’s attention quickly on how critical the availability of the medicine is. The condition leads to changes in the muscle fibres, which gradually weaken the muscles, resulting in an increasing level of disability. The decline in physical functioning in DMD leads to respiratory and cardiac failure and eventual death, usually before the age of 30.

Ataluren is the first licensed treatment for DMD that addresses the loss of dystrophin, the underlying cause of the condition. It has a conditional marketing authorisation in the UK for the treatment of DMD. The families of children affected, and Muscular Dystrophy UK, have campaigned for NHS England to make the drug available, since it became the first EU-approved drug for tackling Duchenne muscular dystrophy last August. The condition affects 2,500 people in the UK, causing increasingly severe disability and cutting lives short. It would be useful if the Minister and his Department could address NICE’s concerns, as it has asked questions. The right hon. Member for Chesham and Amersham referred to NICE and outlined four or five questions. I think that the focus that will emerge from the debate will be on how to improve the NICE guidelines and improve access to drugs throughout the United Kingdom of Great Britain and Northern Ireland.

Whenever I attend health debates in Westminster Hall, I ask whether we can have not just a regional strategy but a UK-wide one, bringing Northern Ireland, Scotland and Wales together. Will the Minister consider that? The four regions can benefit from each other’s knowledge. Collectively, we can do better.