Specialist Neuromuscular Care and Treatments

Lord Brady of Altrincham Excerpts

Tuesday 15th December 2015 Westminster Hall

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I beg to move,

That this House has considered access to specialist neuromuscular care and treatments.

[Mr Graham Brady (in the Chair)]

Mrs Gillan, you have the opportunity to speak to the motion.

[Mrs Gillan]

Thank you very much, Mr Brady. I was not sure whether you were going to say something more from the Chair before I spoke again. May I welcome you warmly to the Chair? Perhaps we will get through this debate together without knowing too many details about the procedure.

I also welcome the Minister to his position. When one is a Minister, one sometimes finds oneself in debates where it is déjà vu all over again, as they say. I am afraid that this is probably going to be one of those debates, but it is no less serious than the debate that we had last week on this subject, and I am grateful for the opportunity that the House has given me to reinforce that debate, by allowing this debate today. I see colleagues in the Chamber who were also here last week, and they will know how passionately I feel about this subject; indeed, many of my colleagues, from all parties in the House, feel passionately about it.

I really am delighted to have an opportunity to speak about this subject, because as I think we all know, there are more than 60 different types of muscular dystrophy and related neuromuscular conditions. It is now widely accepted that approximately 1,000 children and adults for every 1 million of the population in the UK are affected by these muscle-wasting conditions, and it is estimated that some 70,000 people right across the UK are affected.

I appreciate that there are other areas that we could discuss under this topic, and I am sure that we will hear from colleagues about them. However, I will use this opportunity to concentrate on muscular dystrophies such as Duchenne muscular dystrophy, on which I have been working hard with my constituents, the Hill family, in order to gain access to a drug called Translarna.

Around 2,500 children and adults in the UK have Duchenne and almost all of them are male. The condition is caused by the lack of a vital muscle protein called dystrophin. It leads to muscles weakening and wasting over time, and to increasingly severe disability. The vital heart and breathing muscles are affected, which often causes devastating cardiac and respiratory difficulties. In older patients, assisted ventilation can be required, which necessitates 24-hour care. Some patients have to undergo a tracheostomy procedure and, sadly, few people live with this condition past their 30th birthday.

Duchenne has a huge impact on families and on the individuals who suffer from it. Only about 100 boys are diagnosed with it every year in the UK, but it is hard to overstate the devastation to the individual and the surrounding family that it causes. The diagnosis is really hard to come to terms with, and the family must deal with huge challenges as the condition progresses and the patient grows older. It usually leads to full-time wheelchair use, surgery for scoliosis, which often involves inserting iron rods into the patient’s back, and the use of full-time assisted ventilation.

As the Minister knows, there is a very brave little boy who is my constituent. He is called Archie Hill and his parents, Gary and Louisa Hill, together with his brother, Leyton, have campaigned tirelessly for access to Translarna. To put things in context for my colleagues who are here for this debate, I can do no better than to use the words, once again, of Gary and Louisa Hill, which I hope will help people to understand the devastation that this condition causes:

“Being told your child will probably die before you, has to be the most devastating thing you can tell anyone. Archie was diagnosed in 2008. Over the next couple of years we became very reclusive, barely getting out the car at school drop off, sometimes not even answering the phone...we wanted to grieve on our own (grieving is not too strong a word). We’re angry, we look at other families and wonder why us?”

They wonder why it has happened to their beautiful child. They blame themselves, even though they know it is not their fault.

The emotional effect on siblings is really apparent, although I have to say that, having met Leyton, I know he is a fantastic support to his brother and to his mother and father. He is an integral part of this team and should be equally praised for his courage and perseverance. I know that he struggles with his concentration, and that he is deeply affected by his brother’s condition, but he is also a very brave little boy coping with this in his family.

Archie faces huge day-to-day challenges. His parents say:

“He is taken out of lessons for physio on a daily basis. He suffers from…mood swings”.

I find that hardly surprising. They go on:

“Every so often he will ask us questions about his condition; does it only affect my legs? Do I always have to take this medicine? Why do I have to wear the night splints?”

He asks all the sorts of questions that a child of his age would ask their parents when they knew that they were suffering from this condition.

Despite that, Archie has great stamina, and he has spent whole days here campaigning, marching up to Downing Street and telling the Prime Minister what he wants and what the Prime Minister should do about it. Quite frankly, he is one of the pluckiest little spirits that I have ever met in my life.

--- Later in debate ---

[Several hon. Members rose—]

[Mr Graham Brady (in the Chair)]

Order. Five or six Members want to participate and I want to get on to the winding-up speeches by no later than 3.35 pm. Although there is no formal time limit on speeches, if Members can keep their remarks to around six or seven minutes, we will be able to accommodate everybody.

--- Later in debate ---

[Richard Arkless (Dumfries and Galloway) (SNP)]

I thank the right hon. Member for Chesham and Amersham (Mrs Gillan) for securing a debate on a subject that clearly touches many people for various reasons. It is also of course a pleasure to serve under your chairmanship, Mr Brady. Those Members who know my background as a lawyer and a businessman may be forgiven for asking, “Why are you here to speak about neuromuscular diseases?” I am not a member of the SNP health team, which is lucky to have the profound experience of my hon. Friends the Members for Central Ayrshire (Dr Whitford) and for East Kilbride, Strathaven and Lesmahagow (Dr Cameron), but I am developing something perhaps even more important and certainly more profound: I am living with motor neurone disease within my family.

If I can declare an interest of sorts, Mr Brady, my mother has motor neurone disease and, if Members will allow me, I will restrict my comments to that experience. I do not mean to sideline the 59 other important neuromuscular diseases; I want to ensure that what I say comes from a real place, not just a bunch of briefing notes. That notwithstanding, I want to add my voice to the calls to the Minister to persuade him to get Translarna approved as quickly as is humanly possible. I know that he looks sympathetically on that cause, and we have heard many vivid stories today about how it would affect people quickly.

Like everybody, I would lay claim to my mother—and indeed my wife—being the best that there is. She is the most selfless, dedicated mother in the world. She has literally lived her life for me, my brother, Nicholas, and my baby sister, Poppy—a baby who is now in her twenties. We have been her life. She has lived her life exclusively for us. My brother and sister and I will always be grateful for that. My mother was diagnosed 20 months ago. She kept it a secret with my dad for 16 of those months—thank goodness that she has my dad, with whom she has an unbreakable bond—so I have only been living with it for a few months. It is difficult and, as may become obvious during this speech, extremely raw.

During those 16 months, we witnessed the deterioration of my mother’s speech and joints. She explained the speech by way of fictional dentures that she had apparently had implanted. She explained the hands with reference to a historical arthritis problem in our family. Both were plausible and not really questioned up until the point that she decided to tell us. She did not tell me, my brother or sister or our extended family until after I was lucky enough to be in this place and make my maiden speech. She was determined that I should pursue my dream, and of course her dream, of making Scotland a better nation. I suspect that what she really wants now is a second referendum before it is too late, but I suppose that you get the point.

I will return to my mother later, but I want to pick up on some points made by other Members in this enlightening and touching debate. The right hon. Member for Chesham and Amersham is right to say that there are 60 different types of neurological disease, and I hope that she will forgive me for indulging myself with only one of them today. She talked about the Hill family, particularly Archie. I have this vivid image in my mind of Archie running up to 10 Downing Street and giving the Prime Minister what for—if only all of us could get that opportunity.

The speech of the hon. Member for York Central (Rachael Maskell) was touching indeed. She brings a wealth of practical experience, to which the Minister ought to listen carefully. I was particularly captured by her assertion that equipment needs to be made available when needed. It needs to be the right equipment in the right place at the right time, because time moves too quickly with such diseases. I hope that the Minister will pay careful heed to the hon. Lady’s practical experience, which has substantially benefited the debate.

I was particularly touched by the story of Jagger from the hon. Member for Romsey and Southampton North (Caroline Nokes). I hope that he enjoys his break in Tenerife and that the Minister will listen to calls for Translarna to be approved as soon as possible.

The debate has been consensual so far, and I want to take the politics out of what I am going to say. I want to touch on some things that Scotland is doing well on motor neurone disease, but I do not mean that to be a criticism of the UK Government. I hope that everybody’s ears are open. If we are doing things right, I sincerely hope that the UK can learn. If the UK is doing things right, my ears are open and Scotland can certainly learn. There is no politics in this whatsoever. As an aside, as new Member I have been frankly dismayed at how health services are politicised by both sides of the House. I have become increasingly amenable to the suggestion that perhaps the health service should not be run by politicians at all, but by people who have at heart the interests of the people whom we are here to serve.

Motor neurone disease is a neurological degenerative disease. In simple terms, the mind is fine and continues to operate with full function, but the body gradually gives up. The signals do not go from the mind to the body to make it work: that is how I think of it. Patients are affected differently. My brother-in-law died from it a couple of years ago, and his limbs were affected first. His legs started to give way for no apparent reason. However, my mother’s speech was the first thing to go—this was a lady who liked to talk, who seriously liked to talk! To have that stripped away from her must be incredibly difficult—and I know it is.

Scotland is doing many things well on motor neurone disease. Over the past year we have announced that we will double the number of motor neurone nurses. We are very much in the early stages, but the Scottish Government have provided funding to local authorities to ensure that things happen. At the moment local authorities are recruiting and assessing the need, and I hope that process will be speeded up as we go on.

That funding is a recognition of the difference that specialist nursing can make to motor neurone disease. My mother has to rely on a motor neurone nurse who comes from another region and who can only come on a part-time basis. A very proud woman, she was initially most reluctant to consider any form of help, but she has since come to realise what a benefit the nurse is. She has asked me to take up the cause of getting more motor neurone nurses throughout not only Scotland, but the rest of the UK—we are all human beings, despite our political views.

The change in Scotland has been praised in all quarters. Huge thanks are due to people such as Archie and Jagger. In Scotland a gentleman called Gordon Aikman, Christina McKelvie MSP, and all the staff at MND Scotland have done an incredible job of persuading the Government of the immediate need for those services. We have committed to giving a free voice box on the NHS and to paying families directly for support, not as a patronising gesture to pay people to look after their relatives, but to ensure that support is available if needed. We have also increased investment in palliative care.

I live in a town called Stranraer. The UK average is two people with motor neurone disease per 100,000; the Stranraer average is 13 per 10,000—an astronomical figure. I have asked the chief executive of our local health board to figure out exactly why—

[Mr Graham Brady (in the Chair)]

Order. I am sorry, the hon. Gentleman must resume his seat. I am loth to interrupt a very personal story, but we need to leave time for both the official Opposition spokesperson and the Minister to wind up. I have allowed more than eight minutes, and I am keen to allow the same to the official Opposition.