Above: Associate Professor Simon Lewis

By Keryn Curtis

The success of a two year pilot study looking at the role of a community based Parkinson’s nurse has prompted a call for Government funding to establish a national network of these specialist nursing positions.

A key investigator in the study, Director of the Parkinson’s Disease Research Clinic at the University of Sydney’s Brain and Mind Research Institute, Associate Professor Simon Lewis, said the study, based on a model that has been successful in the UK, reported significantly increased health and quality of life measures for both the people with Parkinson’s disease and their carers.

A/Prof Lewis said the dual impetus for the study came from the success of the Parkinson's Disease Nurse Specialist program developed twenty years ago in the UK and increasing demand from people with Parkinson’s disease and their families for better access to information and support .

“Like Australia, the UK has a large ageing population and they’re looking at ways to better deal with increasing health and care challenges.  Twenty years ago they set up these Parkinsons disease community nursing networks where people can easily ask questions and get extra information when they need it, like after their diagnosis or in response to problems that might arise on a day to day basis.

“It’s the idea of having a nurse out there who is accessible and who can quickly respond and head off problems before they start; and before people end up in the emergency department.  There is a special course in the UK and they have their own college now,” said Prof Lewis.

The Australian-first study, funded by the Commonwealth and conducted in the Shoalhaven region of New South Wales just south of Sydney, was called The Shoalhaven Project.  It involved the placement of a nurse with neurological nursing skills at a community health centre in the region’s principal town of Nowra, with the job of supporting the local population of people with Parkinson’s disease and their carers.      

Prof Lewis said the region was chosen because it was approximately the right sized community - with a high proportion of retirees - to have between 200 and 500 estimated people with Parkinson’s disease.

“In the UK, a community Parkinson’s nurse will typically look after between 200 and 300 people so we felt this community would be about the right size for one nurse.  Shoalhaven also has all the other resources you typically need including a local hospital with a visiting specialist, various community services, support groups and allied health providers.”

“The nurse was based at the community health centre in Nowra and we ran an advertising campaign through the area’s GP practices and the Parkinson’s support groups to let them know there was a free call number for a nurse who could help.  We also got initial sponsorship from Bendigo Bank for a car so the nurse could visit people in their homes,” Prof Lewis said.

The nurse received referrals from over 200 people in the area and 90 per cent of the consultations were conducted in the person’s own home. 

“It was a case of the mountain going to Mohammad,” says Lewis.  “The car did 40,000 kms over the two year period.”

He says the interesting interesting thing that the researchers had not anticipated was the disproportionate number of referrals for people in the advanced stages of the disease.

“In overseas experience, the proportion of people with advanced Parkinson’s disease has usually been around 20 per cent.  But in this study, it was about 40 per cent which suggested a higher proportion of people who really were in need of the support.”

Lewis says the role of the community based Parkinsons nurse is multi-layered, ranging from directly clinical assistance with health checks and medication advice to information and referral.

“Providing information is the first thing – going in and picking apart the problems and questions people have and identifying next steps and solutions; referring them to the right services and people.  And the other role is education.  The community nurse gave a huge number of presentations to aged care services in the area and to the support groups and other groups,” Prof Lewis said.

In the study, about 40 per cent of the community nurse’s consultation time was spent with the carer, rather than the person with Parkinson’s; and significant health benefits for the carer were also reported. 

“We also found that the informal (unpaid) carers or family members of people living with Parkinson’s noticed significant improvements in their own health, with reduced levels of depression,” Prof Lewis said.

“This is particularly significant for carers, given that they often have to spend long periods caring for their loved ones who are living with this progressive and incurable disease.

“The carer represents the biggest barrier to a patient ending up in the emergency room, or in the longer-term care of a nursing home or aged care facility. Nobody wants to be institutionalised, and improving the health of these guardian angels will hopefully keep patients in their own home,” he said.

A model for the future

CEO of Parkinson’s Australia, Mr Daryl Smeaton, said an extensive community-based Parkinson’s nurse support service is vital for Australians living with complex Parkinson’s.  

“Among Australians aged over 55 years, Parkinson’s is more prevalent than breast cancer, colorectal, stomach, liver and pancreatic cancer,” said Mr Smeaton.  

“Yet, although Parkinson’s causes greater disability than in people living with other conditions currently recognised as chronic - such as cancer, diabetes, heart disease, stroke and vascular disease - the disease is not recognised as a priority chronic condition in Australia,” said Mr Smeaton. 

Prof Lewis said Australia was lagging behind other countries in providing Parkinson’s nursing support.  He said he and Parkinson’s Australia would ideally like to see a network of clinical nurse specialists in Parkinson’s disease established across Australia to help deal with the 80 per increase in Parkinson’s disease expected in the next 20 years.  

“People complain about the NHS in the UK but in this area, they seem to have a nursing system that’s a Rolls Royce while in Australia we have one that is only just surviving.

“The government needs to look at how they can deliver this extra layer of specialist nursing. They have approximately 300 of these nurse specialists in the UK servicing a population of around 65 million, so we estimate in Austraia, allowing for the size of the country and the greater distances that we would probably need around 200,” Prof Lewis said.

“If you get Parkinson’s disease you are ten times more likely to go into a nursing home. A national network of community-based Parkinson’s nurses would complement the existing services availabl – including neurologists and geriatricians and hospital-based Parkinson’s nurses -  and bridge the gap for the patient between the hospital and the home.”