Thu 29 Jun 2006(News.Scotsman) - 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
with changes in their symptoms and medication.

He said: "For people with Parkinson's, the Parkinson's disease nurse
is the most important person in the world."

Sufferers of the disease include Lothians MSP Margo MacDonald,
former boxing champion Muhammad Ali and Hollywood star Michael J
Fox.

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. She does a fantastic job, but it is a
totally unrealistic workload and 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.

"But it means the guidelines in Scotland will be at least three
years behind England. Services in Scotland will not have that
standard to be based on."

Mr Mark said although Parkinson's nurses were funded by local health
boards, the society offered to "pump prime" the posts by funding
them for the first two years.

"We need a cast-iron guarantee they will continue thereafter, and
that is the problem for Lothian Health Board," he said.

A Sign spokesman said: "We will be driving forward our guidelines
for Parkinson's disease during 2007.

"Sign is currently committed to completing the UK's largest group of
heart disease guidelines, and as a result our Parkinson's disease
work will finish in 2009.

"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 the support and treatment of Parkinson's disease
suffers and their families should not be seen simply in terms of the
number of nurse specialists employed.

She said: "We currently employ a full time Parkinson's disease nurse
specialist. This post was initially funded by the Parkinson's
Disease Society and is in addition to community nursing services
already available and care of the elderly services.

"Talks are well advanced for the provision of additional nurse
specialists, in conjunction with the Parkinson's Disease Society, to
further increase access to these services."

IAN SWANSON