Parkinson’s workers seek help

As the number of Australians affected by Parkinson’s and other movement disorders continues to mount, so too does the need for specialist nurses.

In Australia, there are just over 30 nurses who work specifically with Parkinson’s and movement disorders – a number that urgently needs to grow says Victor McConvey, a Parkinson’s nurse consultant with Parkinson’s Victoria.

Parkinson’s is the second most common neurological disease behind Alzheimer’s, affecting more than 85,000 Australians. It most often occurs after the age of 50.

Ideally, McConvey says, there would be a Parkinson’s nurse in every metropolitan and rural health network in Australia. A Parkinson’s nurse consultant is being trialled at Goulburn Valley Health. It is hoped the project will provide evidence to support the growth of the program. “Developing movement disorder nurses is the key strategic objective for Parkinson’s Australia and we are working hard in that space – identifying that there are cost savings associated with having a nurse,” he says. “[For example], you don’t have to have unnecessary GP or consultant appointments.”

Parkinson’s nurses who can also troubleshoot in the community may help decrease hospital admissions, and even premature entry into aged care. They can also make a positive contribution to the wellbeing of people living with Parkinson’s and their families.

McConvey confirms that nurses who have the ability to interface with technology will also help save on lengthy travel times to and from home visits, especially in rural and remote areas.

He points to Europe and the UK, where Parkinson’s and movement disorder nurses are recognised and form a key part of the care provided to patients.

“[In Europe, a Parkinson’s disease nurse is an] identifiable and funded part of the national health service and operates as an independent practitioner within a particular region,” he says. Within this context, nurses are running clinics, interfacing with neurology and geriatric clinics in hospitals, as well as doing a lot of domiciliary work.

Recognition for the role in Australia is slowly increasing. McConvey says it has become an election issue, particularly in Tasmania and South Australia. Both of those states now have a government commitment to fund specialist nurses.

“In Tasmania, we have three government-funded nurses within the department of health and ageing [in that state] and manage people with Parkinson’s and other neurological disorders,” he says.

Despite this and ongoing research that continues to show the benefits of the nurse role in the treatment of such conditions, many patients still do not have access to this type of care.

But Moira Lewis, a patient diagnosed with Parkinson’s disease in 2006, did. She says the type of care provided by the Parkinson’s nurse has made her condition manageable.

A Parkinson’s nurse was the first point of contact following her diagnosis. Lewis said that without the vital information and support provided during this time she would have been lost.

“Whilst the neurologist is good, [the nurse] brings down the everyday practicalities of living with it,” Lewis says.

She says there have been occasions where her medications haven’t been working quite right or she has needed to make quick contact with the nurse – which has never been a problem.

“It’s support but it’s also vital in our management of the condition,” Lewis says. “I believe [the role] is so pivotal to us.”

Advanced procedures, private practice

Parkinson’s and movement disorder nurse specialist Mary Jones has a career that spans 53 years – 16 of which have been dedicated specifically to specialising in this area.

Jones, who is one of only three private practice specialists in Australia, says a lack of knowledge of the role, and of specific funding, are hindering the uptake of this specialty as a career pathway for nurses.

“The message I am trying to get across is how rewarding it is and how great the need is for people with chronic Parkinson’s and movement disorder conditions to have somebody to talk to, who knows what they are talking about and has expert knowledge in the area,” she says. “I go on a journey with [the patient] to a large extent. I explain, educate, demystify and support. It’s a pretty nasty diagnosis until they have got somebody like a nurse to demystify it.”

Jones spends a large portion of her days working with patients who have undergone deep brain stimulation (DBS) – a procedure that involves implanting a brain pacemaker to help treat movement disorders.

“I am actively programming the stimulation in their brains, which is a very advanced role of nursing when you consider [you are] putting electricity into people’s brains and tweaking it.”

Queensland-based nurse consultant for movement disorders Karen O’Maley has also been working in neurology/neurosurgery nursing since 1990. Like Jones, she is now in private practice with a large focus on DBS.

She believes the next step should be to look at a credentialing process or qualification that allows access to payment for service provision in a highly specialised field of nursing.

“It would be nice if we could get it seen as a fully-fledged specialty and very similar process to, say, what the diabetic educators went through to get their credentialing underway,” O’Maley says. “I think the precedence has been set, we have just got to know how to do the lobbying.”

Joint consultations

Movement disorder neurologist Richard Peppard has spent the last eight years working alongside Jones in a private practice based in Hawthorn, Melbourne.

Peppard originally worked with Jones in the public sector, before poaching her to work alongside him in private practice.

He says the dual disciplinary approach is an enormous advantage in the treatment of chronic disease, as it’s always a challenge for the clinician to field calls and contact patients.

He spends two days a week working in the office adjacent to Jones’s, seeing patients with Parkinson’s disease and other movement disorders.

“Mary often sees [patients] first – gets their story, their deep brain stimulation settings and then I come in and discuss their story and we decide whether we will make adjustments to the stimulation or medication,” Peppard says.

Nurses have a different perspective on things – they will often be aware of the person’s social situation. As Peppard explains, “Mary has done home visits, is familiar with nursing homes, and she understands the geriatric system and accessing respite, support and care.”

Peppard believes a change in current funding would lead to a substantial growth of nurses in this area.

“The lack of specific or extra funding for these sorts of joint consultations that we do as a physician and nurse makes it an uncommon arrangement,” he says. “[With funding], instead of a handful of people, there could be many people – with a good understanding of the specific diseases – linked to a physician or even multiple physicians and involved in training and supporting patients.”

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