The NHS has barely begun to implement recommendations made over two years ago to improve care of people with multiple sclerosis, a report by doctors says.
The NHS treatment watchdog had called for faster diagnosis, more specialist services and better tailored care.
But the report commissioned by the MS Trust and the Royal College of Physicians found services were of "low quality and inadequate quantity'.
The government said it expected the NHS to adhere to the guidelines on MS care.
"I have been made to feel that because my MS is incurable then I am not worth taking the time with." - MS patient
MS, which affects about 85,000 people in the UK, is a disease of the central nervous system. It causes the break down of the myelin sheath, a fatty protein, which coats nerve fibres.
No firm targets
The latest study examined how strategic health authorities, primary care trusts and hospitals were dealing with MS.
It found disappointing levels of progress - and a lack of data collection which made assessing reform difficult.
"I was assessed, agreement reached that I needed a shower facility. I was told I was on a three to four year waiting list. I have fallen several times climbing into the bath. When I questioned this lengthy wait I was told there were people more needy than me. I asked who, and was told 'cancer patients'." - MS patient
This, the authors blamed on a failure by the National Institute for Health and Clinical Excellence to set concrete targets.
MS patients said they were dissatisfied with the quality of their care.
Professor Derick Wade, an expert in neurological rehabilitation at Oxford University, worked on the report.
He said: "It cannot be left to individual clinicians to make piecemeal progress. Without strong support from commissioning organisations and hospital trusts, significant progress will not occur."
Professor Dame Carol Black, president of the Royal College of Physicians, said the findings suggested MS was a low priority in the NHS.
"This audit is disappointing for patients, who looked for improvements following the issue of NICE guidelines.
"It reminds us that merely setting service standards, without adequate arrangements for quality assurance, falls short of what patients are right to expect."
Christine Jones, chief executive of the MS Trust said the disease was ignored because it was difficult to treat.
"There are some pockets of excellent practice but services for people with MS are, in the main, in a very sorry state and we can ill-afford to waste two years in putting the situation right."
'Joined-up approach'
Dr Gillian Leng, of NICE, said: "At the time of the guideline's publication in November 2003 it was widely seen as representing a catalyst for change that would inform a more joined-up approach to service delivery in an area of healthcare that had not, until then, benefited from the application of a consistent and coherent national approach.
"But, as this report indicates, the NHS can do more to implement the guideline's key recommendations in order to ensure that people with MS are receiving the best possible levels of care."
A Department of Health spokesman said it expected the NHS to take "full account" of the NICE guidelines.
"They are now included in the national standards used to measure local NHS performance and are taken in to consideration by the Healthcare Commission when they produce their annual reports on NHS bodies."
Story from BBC NEWS:
Published: 2006/07/19 00:17:33 GMT
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