Health: Neuromuscular Services

Baroness Thornton Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Thornton]

My Lords, the noble Baroness, Lady Thomas of Winchester, has rightly been raising these issues in the House since her welcome arrival here, and I have lent her my support whenever I have been able to do so.

The Muscular Dystrophy Campaign website asks all parliamentarians to take an interest in what the future holds for people with neuromuscular disorders, so this debate is very appropriate. Over the past few years, we have had the Walton report, led by the noble Lord, Lord Walton of Detchant, and the all-party parliamentary group. We have also had the Thomas report in the Welsh Assembly, so named after Ray Thomas, a tireless campaigner in Wales whose sons both had Becker muscular dystrophy, and the Mackie report in the Scottish Parliament. It was very wise to cover all three nations.

The three reports that have been produced, together with their recommendations, provide a focal point for the continued battle to ensure that action is taken to address the significant gaps in the provision of specialist neuromuscular care and to implement service improvements. I take this opportunity to congratulate the Muscular Dystrophy Campaign on its tireless and very effective work in raising the profile of the different and severe orders and also on the fact that it points without fail to the challenges, and sometimes the hardships, suffered by the families of people with these disorders. I shall not go into detail about the different types of muscular dystrophy, as the noble Baroness, Lady Thomas, has already done that, save to say that 1,000 children and adults out of every million people in the population are affected by muscle-wasting neuromuscular diseases in England. These disorders cause progressive muscle wasting and weakness, and they often result in premature death and lifelong disability. They often start in childhood or young adult life. As we know, the diseases are sometimes genetic and sometimes they are acquired.

Perhaps I may say how much I welcome the national programme of work for neuromuscular services that has been announced. The 10 regional NHS specialised commissioning groups, or SCGs, and the national specialised commissioning team met earlier this year and agreed a national programme of work around neuromuscular services for the year ahead and that the outputs of that work will be used to support a national approach to commissioning specialised neuromuscular services. Their 10-point plan is absolutely admirable, and I should like to highlight some of the things that are in it. They are: to write a service specification for specialist neuromuscular services; to carry out an audit of unplanned emergency admissions for patients with neuromuscular conditions; to clarify the current arrangements across England for access to genetic testing in order to obtain a clearer understanding of what genetic testing is being undertaken; to understand the current workforce of community physiotherapists and key community-based staff to identify what skill development is required; to create a service directory for each neuromuscular service, which would mean that healthcare professionals such as GPs would have access to a database containing standardised information; to understand the current arrangements for access to specialist equipment and to map that across the country to find gaps to understand the current arrangements for access to non-invasive ventilation; to make sure that neuromuscular patients have their specific needs for end-of-life care and that the national end-of-life work programme has considered the specific needs of patients with neuromuscular disease; to support the development of neuromuscular networks when they are appropriate; and to collate and review the various SCG reviews of neuromuscular services.

I thought that it was worth listing those points. I am sure that the noble Earl is going to go into more detail about them, but I thought that it was significant that after a meeting with the Muscular Dystrophy Campaign the Minister said in a letter to the noble Lord, Lord Walton of Detchant, that there are,

“weaknesses in commissioning, which is behind the patchiness and problems accessing vital services for those living with these dreadful conditions”.

That is exactly right.

Given that we know that comprehensive neuromuscular services should be designated within the specialist services national definition set, an audit of current services should be undertaken and the Department of Health should work with the emerging British Myology Society, mentioned by my noble friend Lady Wilkins, in approving a standard diagnosis and care for neuromuscular conditions. Is it possible that this progress will be able to be maintained under the current circumstances, both in the short, medium and long term? My question, echoed by virtually every the noble Lord who has spoken today, is: how will the specialist services weather the transition in the short term, when strategic health authorities and PCTs are disappearing and the GP consortia are being created? Indeed, how will we ensure that GP consortia will be able to recognise and commission for these rare diseases, picking up what commissioning has produced at a national level? Will the national commissioning use the 10-point plan? How will services such as hydrotherapy be delivered? The Minister will remember that I asked this question when we discussed this in the Chamber some months ago with the noble Baroness. This is an expensive but very effective therapy. Furthermore, what research are the Government supporting? How are they investing in research? Would the research be able to look at things such as the effectiveness of hydrotherapy and the pain management mentioned by the noble Lord, Lord Luce? I echo the point about NICE guidelines and look forward to hearing the Minister’s reply.