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Monday, November 30, 1998 Published at 00:15 GMT


NHS accused of failing MS patients

GPs are left to treat most multiple sclerosis patients

The NHS is failing people with multiple sclerosis even though it is the most common neurological disease affecting young adults, experts have claimed.

BBC Health Correspondent Richard Hannaford: Concerns have been expressed by leading neurologists and MPs
The Multiple Sclerosis Society has launched a campaign for national standards of care for people with the disease.

A survey of health authorities by the Association for Quality in Health Care, has found that nearly half of those who responded have no contracts at all for diagnostic, treatment or rehabilitation services for MS.

Research by the MS Society has also found that one in three patients have their health managed only by their GP, not a neurologist.

Many patients are not referred to other specialists to deal with common symptoms like pain and incontinence.

The MS Society survey also found that two thirds of neurology centres do not specify the services that should be available for MS patients.

The latest findings come on top of a long running controversy about the availability of the MS drug interferon beta.

Many health authorities refuse to fund NHS prescription of the drug on cost grounds, even though recent research has shown that it can significantly improve the quality of life of MS sufferers.

Fifteen of the country's leading neurologists have signed a statement urging the government to improve the quality of life of people with MS and their families.

The statement reads: "We believe that the NHS has failed to respond adequately to the needs of people with MS and that services for them, with some shining exceptions, are seriously deficient in most parts of the country."

[ image: Robin Corbett: Figures are
Robin Corbett: Figures are "appalling"
MPs on the All-Party MS Group at Westminster also backs the campaign. Chairman Robin Corbett and Andrew Lansley will deliver a supportive statement signed by more than 30 MPs and peers to 10 Downing Street on Monday.

Mr Corbett said he wanted a full debate in the House of Commons.

"These figures are appalling. People with MS have many health and social care needs the NHS is conspicuously failing to provide," he said.

The MS Society's Chief Executive Peter Cardy said: "The research confirms our worst fears about the lack of proper care for people with MS.

"We are not blaming GPs. Most will only see a handful of MS patients during a working lifetime.

"They cannot be expected to have knowledge in depth of such a complex illness.

"They can also be reluctant to refer patients to specialists they know are over-stretched."

Mr Cardy said the lack of proper specialist service for MS patients placed an "enormous burden" on both GPs and social services.

"The problem will not be resolved until the government sets national standards of care which provide easy access for all people with MS to an integrated service of symptom and care management," he said.

Mr Cardy said the MS Society and the National Hospital for Neurology had already developed and published standards of service to which people with MS should be entitled.

These included prompt and sensitive diagnosis, multi-disciplinary care and access to new drug treatments.

MS affects 85,000 young adults in the UK.

[ image: Interferon beta 1a is banned by some health authorities]
Interferon beta 1a is banned by some health authorities
The disease is caused by a malfunction in the body's immune system that causes it wrongly to identify body cells as foreign invaders.

As a result, the myelin sheath coating nerves in the brain and spinal cord is destroyed by mistake.

Transmission between nerve cells slows down and becomes irregular, leading to loss of balance, reduced vision and bouts of localised paralysis.

Eventually, patients may become totally paralysed and wheelchair-bound.

Relapsing-remitting MS patients initially experience one or more bouts of illness, followed by complete or partial recovery. Patients are clinically stable between relapses.

Progressive MS patients become gradually more disabled.

Secondary-progressive MS patients start out with the relapsing-remitting form of the disease, but then experience gradual progression of disability.

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