Monday, 19 April, 2004
Multiple sclerosis patients are missing out on basic care and support because there are too few specialist nurses, a charity has warned.
The MS Society says the number of nurses across the UK needs to double to 300.
There are currently 85,000 people living with MS in the UK.
The charity says the nurse shortage can mean some patients have to wait to access drugs which could slow the progress of their disease.
MS is an incurable neurological condition, in which the myelin, the protective sheath surrounding the nerve fibres in the brain and spinal cord, is damaged.
Symptoms can range from mild and occasional illness to severe and rapid deterioration.
Initially it causes loss of balance, reduced vision and bouts of localised paralysis.
Eventually, patients may become totally paralysed and wheelchair-bound.
Detailed expert guidance about the care MS patients should receive, backed by the National Institute for Clinical Excellence, were launched on Monday to mark MS Awareness Week.
'Range of problems'
The MS Society estimates there are currently around 163 MS nurses in England, which are funded by the NHS, drug companies and the charity itself.
While patients in places such as London, Liverpool and Newcastle benefit from a high level of specialist nursing support, the charity says there are still "black-spots", such as Surrey, Sussex and Mid-Wales where there is little or no coverage.
Nikki Embrey, a clinical nurse specialist at University Hospital of North Staffordshire in Stoke, said just three nurses had to cover an area from Burton to Shropshire and Cheshire, when double that number were needed.
She added: "We see new patients within four to six weeks, but if a home visit is required, patients may have to wait up to eight weeks."
The MS Society said nurses wanted to take part in its specialist training programmes, but it did not have the finding to put new nurses in place.
Sharon Haffenden, director of research for the charity, said access to specialist nurses was essential for patients at every stage of their illness because they needed expert help to deal with the complex range of problems associated with the condition.
She added: "When they are diagnosed, the impact is probably minimal, but it's about the shock of diagnosis and taking up any medication if they could benefit from it.
"It's very different when they are severely affected by the disease and their mobility is restricted and they are in a wheelchair, they may have muscle tremors and crushing fatigue."
Ms Haffenden said there were a small number of MS patients who were able to benefit from drugs, such as beta interferon.
But she said: "For many patients, dealing with MS is about everyday problems - getting the right healthcare and social services care.
"Specialist nurses are vital in helping patients and their families."
She said patients who did not have access to specialist nursing were often under the care of GPs and district nurses who did not have the necessary detailed knowledge of the complex needs of MS patients.
Ms Haffenden said: "They may have a couple of patients with MS - they are not going to be experts. If specialist nurses were available, they could also help by training GPs and district nurses."
A Department of Health spokeswoman, said it was already taking steps to increase the number of specialist MS nurses.
"In May 2002, an extra £2.8m was earmarked for the development of MS specialist posts.
"Over the next three years this will create 53 new MS specialist nurse posts."
Ms Haffenden welcomed the added funding, but said more was still needed.
Copyright © 2004, BBC