MS sufferers say they have not had enough information about their condition
Saturday, 21 April,
2001, 23:42 GMT 00:42 UK
By Stephanie Eddy
The Idaho Statesman
sufferers say they are being badly let down by the NHS, according to a
survey by the MS Society.
The survey timed for the start of MS Week showed that only 16% of the 16,000 sufferers surveyed felt they received adequate support from doctors when they were first diagnosed.
Many said they had not been given a proper opportunity to discuss how the condition would affect them.
Less than four out of 10 said they had been given enough information about whether to accept the treatment or care offered to them.
Less than three in 10 sufferers said they had received advice on reducing the impact on their symptoms.
Many felt they had not been given enough access to the appropriate physiotherapy or neurology treatments and few were consulted about how they thought the services for MS sufferers could be improved.
MS sufferers are already angry about delays in guidance on whether the drug beta interferon will be made widely available on NHS prescription.
Preliminary guidance from the National Institute for Clinical Excellence (NICE) suggests the drug, which costs £10,000 per patient per year, was too expensive and the clinical benefits unclear.
But NICE has been told to re-consider its advice by an appeals panel set up to consider complaints about the original decision.
The preliminary guidance has angered MS sufferers, who feel they have been "badly treated" by the NHS.
Peter Cardy, chief executive of the MS Society, said: "Coming on top of the National Institute for Clinical Excellence's indefensible delay in deciding if MS drugs should be prescribed on the NHS, the survey makes deeply depressing reading.
"It shows how badly people with this devastating disease are being treated and how far from reality is the government's commitment to put patients at the centre of the health service."
A spokesman for the Department of Health said everyone, including MS patients, was treated on clinical need.
He said there were considerable services available for MS sufferers and that these were constantly improving.
"We are committed to improving standards of healthcare and to ensuring that new treatments, including new medicines, are introduced into the NHS as fast as possible where they represent a genuine therapeutic advance and are cost-effective," he said.
He said the NICE guidelines were expected by the end of the year.
"It is not appropriate to anticipate what NICE will say. In the meantime, we expect health authorities to have polices in place which provide for individual cases to be considered on their merits, in light of the evidence available on different forms of treatment."