Scandal of Parkinson's sufferers forced to foot bill for own care

Published on Sunday 27 September 2009 22:53

PATIENTS with Parkinson's disease in Scotland are having to pay for vital services themselves because of variations in care provided by the NHS, campaigners have warned.

Speech therapy, physiotherapy and home adaptations are among the services those with the condition have paid for because of a lack of access in the health service, the Parkinson's Disease Society (PDS) said.

They are now calling for new standards for neurological services in Scotland to be fully implemented to improve care for patients.

But there are concerns that the economic crisis could affect the ability of health boards to bring in all the recommendations to be outlined by NHS Quality Improvement Scotland (NHS QIS).

Andrew Sim, the PDS Scotland manager, said: "We know that there are big inequalities in services across the UK and in Scotland in terms of what people are able to get.

"Even in areas like Glasgow, where theoretically there are very good services, we know people that aren't being referred to those services by GPs."

The new standards from NHS QIS cover a range of neurological conditions including multiple sclerosis and epilepsy.

Recommendations for Parkinson's patients include access to health staff such as physiotherapists and speech therapists.

Patients contacting the PDS have reported problems accessing these services in Scotland.

Mr Sim said: "The problem is a combination of the lack of priority that the NHS has given to neurological services in general and Parkinson's in particular over the years.

"It means there are parts of the country that have a very inadequate service.

"The other issue is GPs not having an awareness about how complicated a condition Parkinson's is and not being aware that services exist and they should be referring people.

"The medications are complex and need to be overseen by specialists who understand what the drugs are and how to keep them balanced to make sure people have the best possible treatment."

Mr Sim said different services were missing in different parts of the country.

"We know there is very good provision relative to the rest of the country in Glasgow, with allied health professionals, specialist doctors and nurse specialists. But as soon as you get out of Glasgow into Lanarkshire, there is one nurse specialist currently covering the whole of that health board."

A Scottish Government spokeswoman said: "We are committed to helping people live well with long-term conditions like Parkinson's Disease."

I CAN'T GET INTO THE LOOP'

JANIS Clason has suffered symptoms of Parkinson's disease for three years but has yet to be given a final diagnosis.

The 59-year-old, who lives alone in Stirling, has seen a neurologist and says her GP is "superb". But she has never seen the local Parkinson's disease nurse specialist or been referred to other services which could help her.

"My walking is badly affected and I fall often, yet I've never seen a physiotherapist. Sometimes my voice stops working, but I haven't had speech therapy.

"I am also doubly incontinent and I am just organising things myself with the local incontinence nurse."

While Ms Clason was able to get some home equipment from the council, most of it has been unsuitable and she has had to buy many things herself. Once the Parkinson's Disease Society found out I was not getting any help at all they gave me various avenues I could go down to self-refer," she added.

"I have got a superb GP but as far as the system goes, I can't get into the loop."

Ms Clason said she was highlighting her own case to help others who were not as able to stand up and fight their case.

"I just hope that the NHS will take notice of the new standards which are coming out so that people no longer miss out on services which will help them," she added.