PEOPLE with Parkinson's Disease in Edinburgh and the Lothians are missing out on vital support because of a shortage of specialist nurses, it was claimed today.
And official guidelines which could improve the situation have been delayed until 2009.
The Parkinson's Disease Society, which campaigns for sufferers, said it was generally accepted there should be one specialist nurse for every 300 patients.
But in Edinburgh and the Lothians there is just one specialist nurse to care for 1500 people with the disease.
Guidelines for England and Wales, just published by the National Institute of Clinical Excellence (NICE), stress the need for Parkinson's sufferers to have access to specialist nursing care.
But equivalent advice for Scotland, due to be issued by the Scottish Inter-Collegiate Guideline Network (Sign) will now not appear until 2009.
Patrick Mark, chairman of the Edinburgh and Midlothian branch of the Parkinson's Disease Society, said because it was a progressive condition, sufferers needed regular help and advice on how to cope.
He said: "For people with Parkinson's, the Parkinson's disease nurse is the most important person in the world."
Mr Mark said what sufferers needed was access to advice. "Parkinson's is a condition which, with help and proper services, people can live with. What we don't want is people not getting good services and ending up in an acute ward in hospital. There are 1500 people with Parkinson's in Edinburgh and the Lothians, but only one nurse. People are not getting the service they are due."
He said Glasgow had five or six specialist nurses and the society believed Edinburgh needed four or five to be able to cope.
Mr Mark said people were disappointed that the Scottish guidelines, which are expected to lay similar stress on the need for access to specialist nursing, had been postponed.
He said: "It shouldn't be difficult. Most of the work has been done by NICE in England."
A Sign spokesman said: "We are fully committed to providing robust evidence-based guidelines on Parkinson's for NHS Scotland, and welcome today's NICE guidelines, which will be widely noted."
Jackie Sansbury, NHS Lothian's director of strategic planning and modernisation, said: "Talks are well advanced for the provision of additional nurse specialists."
The full article contains 384 words and appears in Edinburgh Evening News newspaper.
