Services Must Improve For Patients With Muscle Disease - Demands MDC

Main Category: Muscular Dystrophy / ALS
Article Date: 04 Dec 2007 - 4:00 PDT

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Patients with neuromuscular diseases are faced with a fragmented, sub-standard system of care, with significant variations in survival across the UK, according to new evidence gathered by the Muscular Dystrophy Campaign.

Today a group of leading clinicians, patients and the charity will present to Parliament a report illustrating vast disparities in service provision for people with a neuromuscular disease.

Key findings from the report, Building on the Foundations: Establishing a Specialist Neuromuscular Service across England, reveal:

- Survival for patients with Duchenne muscular dystrophy is an average of 18 years in the South West and 30 years in the North East;

- Two out of three Primary Care Trusts are failing to support a muscle clinic for either adults or children meaning that many patients do not receive specialist multi-disciplinary care, as found in an FOI request;

- Inequality of access to specialist care across different regions in England leads to a 'postcode lottery' for patients and their families.

- Some patients are being forced to travel long distances just to receive the specialist care they need;

Example: One family in Suffolk are forced to travel from Suffolk to London, a journey of up to five hours each way, in order to receive specialist healthcare for their severely disabled seven year old son. The long journey affects the treatment of the little boy, who is often exhausted and uncooperative by the time he sees the doctors

- Patients are not receiving an accurate diagnosis, a precise genetic diagnosis or accurate advice regarding prognosis and transmission risk

Philip Butcher, Chief Executive of the Muscular Dystrophy Campaign, today said:

"Today's damning report illustrates the challenges facing Government, the NHS and Commissioners. People with rare illnesses are living longer thanks to medical advances, and yet local NHS services are failing to meet this demand.

"It is essential that the Department of Health and the NHS recognise the specialist nature of the care needed by patients with neuromuscular diseases and ensure that such services are available to all patients, regardless of where they live."

Speaking about the services in his area - the South West - Steve Ledbrook, who has Becker muscular dystrophy and has struggled to find appropriate care and treatment, said:

"Since my transition into adulthood I found the services in the South West to be a desert for the treatment of adults with conditions like mine.

"Expecting disabled people and their families to travel long distances just to gain access to the clinical care they need is very disappointing and simply unfair. Provisions should be made to help us all receive necessary treatment, not make life more difficult."

Co-author of the report, Consultant Neurologist at the Institute of Neurology, Professor Mike Hanna, said:

"It is simply unacceptable that life expectancy for conditions such as Duchenne muscular dystrophy can be halved, after diagnosis, depending on your postcode.

"Specialist care is essential in extending life expectancy and yet it is not available for many patients. Too often specialist care is vulnerable and heavily dependent on a handful of leading clinicians with a research interest in this field, rather than embedded in a properly resourced, long term service."

The Muscular Dystrophy Campaign, clinicians and patients will be calling on the Government and the NHS to:

1. Recognise that current service provision for neuromuscular diseases is failing many patients and acknowledge that all patients with neuromuscular diseases require access to specialist diagnosis, treatment and on-going care;

2. Pay particular attention to those regions highlighted in this report where patient survival is reduced and services are failing;

3. Recognise that services should be delivered through specialised neuromuscular regional centres which also give support and clinical leadership to a network of local clinics;

4. Ensure that these neuromuscular centres and clinics have specialised multi-disciplinary teams to provide all patients with a comprehensive level of care.

5. Designate specialised neuromuscular services within the Department of Health's Specialised Services Definition Set so that Specialised Commissioning Groups (SCGs) strategically plan for these services across England;

6. Press SCGs to ensure that specialised neuromuscular services are firmly embedded in their region of England in order to overcome current fragmentation, weakness and vulnerability.

Muscular Dystrophy Campaign