Muscular dystrophy care 'overstretched and uncoordinated'

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Caroline Spelman MP writes for ePolitix.com ahead of today's Westminster Hall debate on muscular dystrophy specialist care in the West Midlands.

There are around 75 people in my constituency and more than 60,000 people in the U.K who suffer from muscular dystrophy, which covers many types of complex and progressive multi-system disorders which weaken muscles, affect the respiratory system and can cause lifelong disability and even premature death.

There are no cures and without specialist multi-disciplinary care, most patients experience a further reduction in quality of life and, for some conditions, shortened life expectancy.

For example, without treatment, a young sufferer of Duchenne muscular dystrophy on average may not live beyond 19 years of age.

With specialist care and home ventilation, life expectancy is raised to almost 30 years.

To achieve the best quality of care, it has been suggested that all patients need to have access to a multi-disciplinary team including a specialist neuromuscular consultant, specialist physiotherapist and neuromuscular care adviser.

They also need good links to respiratory clinicians, cardiologists, speech and language therapist, orthotists, rehab consultants, geneticists, orthopaedic surgeons, and occupational therapists.

Earlier this year, The Muscular Dystrophy Campaign published a report in which they highlighted a number of very serious concerns regarding neuromuscular services in the West Midlands.

Currently, there is a sub-optimal level of care – it is overstretched and uncoordinated, and reliant both on charitable funding, and also on the goodwill of the lead clinicians, who do an excellent job under difficult conditions.

Existing specialist clinics do not have capacity to meet current demand – patient lists show that 50 per cent of people with a neuromuscular condition in the region are currently not receiving any specialist care and sufferers have to go as far a-field as Chester for help.

But it is not simply a case of throwing funding at the problem - money needs to follow the patient, not vice versa.

Pooling of local authority and local PCT funds certainly seems an attractive option.

When there is more autonomy and less prescriptive bureaucracy, the individual patient benefits as they make the decisions that they know are best for them.

I would encourage the West Midlands service providers to work together to ensure that sufferers of muscular dystrophy have access to the essential specialist care which can extend their life expectancy and improve their quality of life.

We know that multi-disciplinary specialist care has worked for sufferers in other areas of the country and we desperately need it in the West Midlands.