PEOPLE diagnosed with rapidly deteriorating neurological diseases in rural Western Australia still struggle with a shortage of some quality services, in particular respite care, new research has found.
As a part of the Neurodegenerative Conditions Coordinated Care Program (NCCCP), ECU researchers Dr Susanne Bahn and Dr Margaret Giles found in 2011 that despite overcoming many obstacles to better service provision since 2009, sufferers still had to cope with a shortage of quality out-of-home respite care and a limiting age eligibility criterion of 65 years.
The study found a shortage of quality out-of-home respite care was a barrier to better service.
Life expectancy of neurodegenerative sufferers is often relatively short, sometimes less than two years, thus any program needs to be able to respond quickly.
Multiple Sclerosis Society Western Australia’s CEO Marcus Stafford, says the government had recognised the need for the program and, “that it needed to be streamlined”.
He says the program needs to be flexible as there are a number of different diseases considered as “rapidly neurodegenerative”.
Mr Stafford says there is also flexibility because a small number of children have been included “[suffering] mainly from rare diseases”.
The size of rural WA coupled with the rarity of these conditions means that sufferers are scattered over great distances, often far from suitable support.
In 2010 there were 136 people registered with the programme and 79 receiving services in WA. The size of the State (2.5 million km2) compounds the difficulty in delivering services to these few people.
Participants of the program require a range of services and equipment, such as hoists, slim wheel chairs with reclining backs, bed/chair raisers, toilet seat wheelchairs and MP3 players.
He says the program is working well even in rural areas but that, “people often move to metro areas to be nearer to medical services, especially high level medical practitioners”.
Respite providers within the rural areas, such as Goldfields Individual and Family Support Association (GIFSA), are not necessarily aware of the NCCCP.
The program also provides services and brokers other service providers to supply equipment and provide in-home care for sufferers.
Patients have access to in-home care including personal care (showering and dressing), access to allied health professionals, travel assistance, massage services and respite for patients and carers, while services after death include counselling, funeral advice and short term support for the carer.