Vital health programs for people living with Parkinson’s Disease are being cut on the Northern Beaches, forcing them to travel longer distances with fewer amenities for treatment and help.
Parkinson’s, which inhibits walking and basic body movements, is the second most common neurological disease after dementia.
Dot Waterhouse, whose husband, Chris, lives with Parkinson’s and is the Secretary of the Pittwater/Narrabeen Parkinson’s Disease Support Group, catering to more than 60 members, said she had been advised that essential treatment and care programs on the Northern Beaches will be permanently halted.
“The Lee Silverman Voice Treatment (LSVT) Big, and Big for Life programs have been removed from Mona Vale Hospital (MVH) and Brookvale Community Health Centre (BCHC)… There is also another large Parkinson’s NSW support group in Manly. All these people, including my husband Chris, need these programs, yet they are to be axed,” she said.
Developed in the 1980s, the Lee Silverman Voice Treatment (LSVT) is a behavioural treatment geared towards creating neurobiological changes associated with therapy for people with Parkinson’s and is specifically designed to create sustained improvement in speech and voice function. However, Mrs Waterhouse said Chris has been unable to access the LSVT programs because of understaffing and long waiting lists.
“Without these types of programs Chris would be reduced to a shuffling walk, head down and unable to speak to family and friends – just whisper,” she said. “The alternative is to find the money to pay for private programs.”
The three programs were overseen by the Northern Sydney Local Health District, via MVH, but closures will now force Northern Beaches people to travel to North Sydney, Crows Nest or Cremorne to access their nearest facility she said.
Mrs Waterhouse said that apart from being more costly, the basic challenges facing those forced to transfer from Mona Vale to the Lower North Shore included the difficulty of finding parking or getting public transport, essential for those who can no longer drive.
Changed but not gone, says health service
The Northern Sydney Local Health District recently announced in a statement that the Occupational Therapy outpatient program for people with Parkinson’s disease had been “redesigned.”
The service said to ensure the best possible treatment times for the local community the program would be replaced by a one-on-one, six-to-eight week goal-based program with an occupational therapist at MVH or Brookvale Community Health Centre.
The statement said the occupational therapy programs would also include an at-home program for patients. It said some of the programs, such as Lee Silverman Voice Treatment Loud service had halted “due to Covid-19” and will “recommence shortly.”
“This is no cause for celebration,” Mrs Waterhouse advised. “They are still axing the one-hour, once-a-month group class Big for Life program and replacing it with a cop-out program you will be able to do in your own time. This will not work for people living with Parkinson’s and just puts more stress on them and their carers and spouses.
“My husband and I, and other members of our group, agree it is a sensible change to get rid of the LSVT Big intensive program as the program requires participants to complete four days-a-week, for four weeks. It was always a challenge, with a large dropout rate.
“Our concerns are about axing the one-hour-a-month class which has been a very popular and well attended class for years. They could definitely run an equivalent class such as converting the Big for Life classes to a monthly, one-hour top-up class, after people had completed the proposed six to eight treatment sessions. This class would be designed to help us stay fit, have fun and continue to provide participants with opportunities for social interaction while they exercise.”
What is changing exactly?
- Lee Silverman Voice Treatment Big program – stopped
Replaced by a one-on-one, six-to-eight week goal-based program.
- Big for Life program – stopped – no plan to replace
- Lee Silverman Voice Treatment Loud program – paused due to Covid
Remedy?
Ms Waterhouse believes a solution to remedy the decline in local services would be to retain experienced health staff and increase staffing and courses to meet the huge demand for quality Parkinson’s-specific program.
“Keep the location – Mona Vale is easier to access and parking is free. And talk to us!”
What is Parkinson’s Disease
Parkinson’s is a slow-developing degenerative disease of the brain that mainly affects the motor system, such as the nerves, muscles and connective tissue that control movement. The most obvious early symptoms are tremors, rigidity and difficulty with walking.
While sleep disorders, anxiety, apathy and depression are among the most common traits, about 50 per cent of people living with Parkinson’s also experience delusions or hallucinations. Because symptoms are complicated and variable, with no known cure, treatment is complex and requires a combinations of medications, physiotherapy and, for some, eventually surgery to provide relief.
Parkinson’s has increased by 17% in the last six years, with approximately 100,000 Australians living with the disease and 38 new cases diagnosed every day. The cause of the disease is unknown, with inherited and environmental conditions believed contributory factors.
To join a free training program to become carers for those living with Parkinson’s Disease visit https://www.lsvtglobal.com/Get_LSVTLoud_Certified
More information on Parkinson’s Disease
https://parkinsonsdisease.net/
If you have Parkinson’s disease and live on the Northern beaches, information for joining the Pittwater / Narrabeen Parkinson’s Support Group is here:
https://www.northernbeaches.nsw.gov.au/pittwater-narrabeen-parkinsons-support-group
