Tuesday April 10, 10:46 AM
Results of a recent survey by the Multiple Sclerosis Society add insult to injury for already frustrated sufferers who say they are not prescribed the drugs or given the care they need.
The largest ever survey of people with MS in the UK revealed that patients receive a raw deal from the NHS from diagnosis onwards.
Of the 16,000 people contacted by the organisation only 16 per cent said they had received inadequate support after diagnosis.
Less than 3 in 10 were given advice on how to manage day-to-day activities to reduce the impact of their symptoms, and 60 per cent of sufferers said they found it hard to obtain access to a physiotherapist or neurologist.
MS is the most common, disabling disease of the central nervous system affecting young adults in the Western world, typically striking between the ages of 20 and 40. While some patients only suffer infrequent attacks of nervous damage after diagnosis, others enter a downward spiral in which their mobility rapidly and permanently deteriorates.
The report comes amid a growing sense of anger among MS patients at what they perceive as unjustified delay on behalf of the National Institute of Clinical Excellence (NICE) in licensing beta interferon, the drug credited with delaying progression of the disease.
The institute was expected to complete its evaluation of the drug last December, but announced at the last minute that it needed six more months to confirm beta interferon's cost effectiveness. This sparked bitter condemnation from MS sufferers, who fear that if licensing does go ahead this July, the drug will not be made available to them until the end of this year.
Peter Cardy, chief executive of the MS Society, said, "Coming on top of NICE'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 this government's commitment to put patients at the centre of the health service."
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