Help wanted: Parkinson’s patients feel support is lacking

By | April 16, 2019

IT’S more prevalent in rural and regional areas than in the city and the waiting list for patients is growing. So why is it not more of a priority? Regional journalist Sahil Makkar looks at Parkinson’s disease in the Central West.

But the disease is still not a priority for the state and federal governments or the charitable sector despite an increase in the number of cases over the years, according to experts.

They say about 2000 Parkinson’s patients are on their own in the region in the absence of a Parkinson’s nurse in Bathurst, Orange and Dubbo and because of fewer specialists.

Currently, the Central West has only three neurosurgeons with expertise in Parkinson’s.

Neurosurgeons say the waiting period to see a new patient is at least three to four months, unless it’s an emergency.

FRUSTRATING: Lorna White, the co-ordinator of the Parkinson's NSW Dubbo support group, would like to see nurses provided in the region.

FRUSTRATING: Lorna White, the co-ordinator of the Parkinson’s NSW Dubbo support group, would like to see nurses provided in the region.

Support groups

Lorna White, the co-ordinator of the Parkinson’s NSW Dubbo support group, says sometimes it’s frustrating that help is not at hand.

“I know Parkinson’s NSW is going to say we can ring the helpline,” said Ms White, who looks after her 79-year-old husband with the disease.

Ms White feels it would be better if nurses were provided in the region.

Parkinson’s NSW, a not-for-profit organisation, runs a helpline, 1800 644 189, for patients and their families.

It also has more than 70 support groups in the state.

Ms White said they are fortunate that they have a neurosurgeon who visits Dubbo every six weeks, but not everyone is that lucky.

“People in Narromine and further out, they must just feel that they are on their own,” she said.

“It’s really sad.

“Parkinson’s is a lot more prevalent than what it used to be.”

Chairman of the Bathurst support group, David Veness, 71, says nurses fill the gap due to the long waiting period to see a doctor.

“The nurses can’t administer medication, but if they think it [the condition] is severe, they can contact the neurologist and explain, and can get [a patient] further up the list,” said Mr Veness, who got Parkinson’s 11 years ago.

Mr Veness travels for his treatment to Sydney, which has more Parkinson’s specialists.

WAITING LIST: Dr Emma Blackwood of Orange-based Central West Neurology and Neurosurgery.

WAITING LIST: Dr Emma Blackwood of Orange-based Central West Neurology and Neurosurgery.

Neurosurgeon speaks

Parkinson’s is more prevalent in rural and regional areas than cities, according to Dr Emma Blackwood of Orange-based Central West Neurology and Neurosurgery.

“There is more need for Parkinson’s nurses out here than the cities,” she said.

She said Parkinson’s is not on the priority list for authorities in the same way as cancer.

“Cancer is highly prioritised because cancer is a terrible disease as well, but for some reason it [Parkinson’s] is not prioritised and I am not sure why,” Dr Blackwood said.

“Unlike cancer, Parkinson’s doesn’t kill people, it disables people. It’s usually a disease of middle-aged, old-aged people as opposed to young people.”

Asked about the growing waiting list for Parkinson’s patients in the Central West region, Dr Blackwood said the new patients wait two to three months before they get an appointment.

“I guess the waiting list is probably longer at the public hospitals,” she said.

“We see people urgently, if need be. But otherwise it’s a few months’ wait. The neurologist at Dubbo is currently on leave and has not been replaced yet, so waiting lists have lengthened.

“Two neurologists in Orange retired recently, so the waiting list has increased further.”

Dr Blackwood said they have been trying to recruit more neurologists.

“A lot of doctors want to stay in the city and find it difficult to move to rural areas.”

Parkinson’s stigma

Mr Veness says the biggest challenge for their support group is to reach out to patients who are living in denial.

“A couple of well-known citizens [in Bathurst] have it, but they don’t want people to know it,” Mr Veness said.

He says many patients don’t want to run the risk of losing employment and their driving licence.

Ms White wants an organisation like the McGrath Foundation to take up the Parkinson’s cause and help people in regional areas.

“It is not easy to jump on a train and go to Sydney for treatment,” Ms White said.

Region is going to have to wait

IT’S not good news for about 2000 Parkinson’s patients in the Central West.

They will have to wait at least until July 1 before a Parkinson’s nurse is hired again in the region.

The Central West has been without a Parkinson’s nurse since the last person in that position left about 12 months ago.

Parkinson’s NSW, which had paid for the nurse in Orange’s Central West Neurology and Neurosurgery, said it now wants to place a nurse with the Western NSW Local Health District (WNSWLHD).

“We believe attaching this role to the WNSWLHD will deliver better outcomes for people living with Parkinson’s,” Parkinson’s NSW CEO Jo-Anne Reeves said.

“We are still negotiating with the WNSWLHD, but the placing of a nurse will be some time after July 1.

“That’s when the new state budget will kick in and following that, further time will be required for recruitment of the nurse.

“The model is we pay 50 per cent of the salary and the Local Health District pays the balance.”

A WNSWLHD spokesperson said the health district is exploring options to develop a role which could help improve access to services and support for people living with Parkinson’s.

“People living with Parkinson’s disease can access a range of clinical in- and out-patient services provided through the WNSWLHD,” the spokesperson said.

“Services vary from allied health care such as physiotherapy through to medical or surgical intervention in a hospital and are tailored to the needs and location of each person.”

Potentially one nurse won’t be enough, but we must start with one nurse.

Ms Reeves said their objective is to get nurses into every local health district (LHD) in the state.

Parkinson’s NSW and each LHD will then jointly assess the effectiveness of those initial placements, and the need for further resources in response to local demand.

“The ongoing research would measure the effectiveness of each position,” she said. “Then when we identify further measurable demand, we would negotiate more nurses.”

Ms Reeves believes there could be more than 2000 people with Parkinson’s in the local Western NSW Local Health District as its population is over 200,000.

“Potentially one nurse won’t be enough, but we must start with one nurse, then evaluate the position as we go. We would then make adjustments in line with the local demand for services,” Ms Reeves said.


No cure … and cases on the rise

Parkinson’s is a progressive neurological condition which affects the brain’s ability to control movement.

It can be associated with other symptoms including mood, depression and anxiety.

There is no cure.

One in every 308 people (2018 estimate) in Australia lives with Parkinson’s, 37 cases are diagnosed every day and 13,500 new cases were diagnosed last year.

Of the estimated 110,000 people with Parkinson’s, 18 per cent are of working age and 10 per cent are under the age of 40.

The prevalence of Parkinson’s increases by a factor of three after the age of 65.

The number of people diagnosed with Parkinson’s is expected to increase dramatically as the Australian population ages.

The prevalence of Parkinson’s in the community is greater than many cancers including breast, stomach, lung, prostate, liver and pancreatic.

The average time from onset to death is about 12 years, but this varies greatly from patient to patient.

People who are diagnosed relatively early in their lives can live with Parkinson’s for decades.

The average lifetime cost of living with Parkinson’s for 12 years is around $ 161,300 per person – slightly higher than the average lifetime cost of cancer ($ 145,000).

People living with Parkinson’s are more than five times more likely to be in residential aged care than the general population.

The burden of care borne by carers and partners of people living with Parkinson’s has increased by over 14 times since 2005.

People with Parkinson’s disease can access a specialist counsellor on 1800 644 189 for an appointment.

– Source: Parkinson’s NSW

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