Health: Neuromuscular Services

Baroness Jolly Excerpts

Wednesday 30th March 2011 Grand Committee

[Baroness Jolly]

My Lords, I should like to outline some issues around the treatment, care and quality of life of those with motor neurone disease, and then give an example of how the NHS in the south-west is dealing with Duchenne muscular dystrophy. I will conclude by gathering together points for my noble friend to consider in the context of research, NICE and commissioning these services in the new NHS.

Motor neurone disease is a disease of low prevalence but high need and very high cost. MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Their degeneration leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing.

Perhaps I may tell the Committee about Patrick, an artist who was diagnosed in 2008 with MND. Patrick is determined to live a life that is as full as possible with his wife Kathy and three young children. He said:

“I have found out first hand what MND does to individuals and their families. I am gutted that I won’t get to see my children grow up. It’s like watching a great film and not being able to see the end. I want to help stop this. I want to get better care for me and my fellow sufferers and I want a cure. To do this we need to raise awareness and get more money for research. I will not get to see my daughter go to school and want to do anything I can to stop that happening to others”.

A salutary tale.

The rapid progression and wide range of symptoms mean that people with MND have complex and demanding care and support requirements. Someone with motor neurone disease may need as many as 18 health and social care professionals providing care at any one time—a complex care pathway and one that will differ from patient to patient. In the UK, the MND Association estimates that good care costs around £200,000 per person per year. However, where poor care results in crises and unplanned hospital admissions, this cost can easily double or even triple.

Fortunately, the numbers are low—around 5,000 in the UK, an incidence of around seven per 100,000. Here, I echo the call of my noble friend Lady Thomas: there is currently no national guidance for MND, and the MND Association is calling for the National Institute for Health and Clinical Excellence to produce a clinical guideline and a quality standard.

My noble friend Lady Thomas has spoken with personal experience of muscular dystrophy. In 2007 in the south-west of England, which is where I live and where 5,000 children and adults are living with muscular dystrophy, on average a young man with Duchenne would die at the age of 18—and that, compared with the average in the north-east of 30 years, was unacceptable. It was thanks to an effective campaign run by members of the public—families affected by this condition and parliamentarians—ably assisted by Muscular Dystrophy Campaign, that a south-west muscular dystrophy clinical network was set up. This was wonderful news for the families affected: it meant that journeys to Oxford or Oswestry for treatment—from Penzance, Cornwall or wherever— would be a thing of the past. This managed clinical network, set up by the south-west commissioning group, is making a huge impact across the peninsula, from Truro to Bristol to Exeter and Salisbury, providing three consultants, three and a half specialist physiotherapists, care advisers, a psychologist and extra support. It is seriously good news and costs PCTs in the region less than £9 per patient per month.

By setting up this service, its importance was recognised by the strategic health authority. Both motor neurone disease and muscular dystrophy Duchenne services will need expert commissioning. Smaller GP commissioning consortia will see very few of these patients from year to year. Motor neurone disease does not even figure on NICE’s radar. I would be grateful if the Minister could shed some light on how the proposed NHS Commissioning Board will deal with the commissioning of these services after NHS reorganisation. Would he also indicate the willingness of the Government to include motor neurone disease in NICE guidelines and indicate what levels of research support, and from where it might come, will be given to these organisations that work so hard for this small but important group of patients?