The Services and Social Needs of People with Multiple Sclerosis in New South Wales, Australia

Article excerpt

Introduction

Multiple sclerosis (MS) is a chronic disease of the nervous system which, in general, affects young and middle-aged adults. Damage to the myelin sheaths surrounding nerves in the brain and spinal cord affects the function of the nerves involved. The progression of the disease is characterized by recurrent relapses and remissions. McDonald (1992) described common clinical symptoms as unsteady gait and shaky movements of the limbs, rapid involuntary eye movements, bladder and bowel disturbance, cognitive changes and spastic weakness. Other symptoms include fatigue, heat intolerance and pain. The cause of the nerve damage is not known. McDonald (1992) states the most favored proposition as to the cause of the disease is that a

"genetically susceptible individual develops an autoimmune process in response to an environmental trigger, such as a virus".

Treatment of MS includes the use of immunosuppressive and anti-inflammatory drugs, special diets, vitamin and mineral therapies, hyperbaric oxygen and the removal of dental amalgam. Management of symptoms of the disease can take the form of air conditioning in cars and homes for heat intolerance; pain management drugs; stretching and weight bearing activities, splinting and relaxation therapy, medication, peripheral nerve blocks and biofeedback for spasticity; medication for bladder dysfunction; diet and fluid intake control for bowel dysfunction; weighted limb bands and aids to daily living for tremor. Other general physical supportive measures can include walking aids, wheelchairs and adaptive equipment to allow independence. Emotional supportive measures include counseling for financial, employment and psychological issues.

The difficulty in providing an accurate diagnosis of MS in some cases and the lagtime for clinical onset of the disease are factors which affect the accuracy of incidence and prevalence estimates of MS are discussed by Sadovnick and Ebers (1993). Sadovnick and Ebers(1993) summarize MS prevalence rates into "high", "medium" and "low" risk groups. The groups are defined as:

'Rates from 30 per 100,000 characterize "high risk" areas such as northern Europe, northern United States, Canada, southern Australia and New Zealand. "Medium risk" regions (prevalence between 5 and 25 per 100,000) population may include southern Europe, southern United States and northern Australia. "low risk" areas (prevalence less than 5 per 100,000 population) include Asia and perhaps parts of South America'.

Both Sadovnick and Ebers (1993) and Wynn, Rodriguez, O'Fallon and Kurland (1989) report on increases in prevalence rates when a geographic region's rate is assessed again at a later data. Wynn et al. (1989) acknowledge that increases in prevalence may relate to increased survival of MS patients, changes in population age composition, migration and miscellaneous effects of restudy but also stress that an increase in incidence should also be considered. The prevalence of MS in the Australasian major population regions is as, at times, high as much of North America and Europe. Prevalence has been measured as high as 69 per 100,000 (Compston, 1990) in the south of New Zealand and 76 per 100,000 (Compston, 1990) in Tasmania. There have been studies which addressed the epidemiology of the disease in the Australasian region including one examining the determinants of MS (Miller, Hammond, McLeod, Purdie, and Skegg, 1990) and another specifically looking at the epidemiology of the disease in 3 cities (Hammond, McLeod, Milligen, Stewart-Wynne and McCall, 1988). However, these studies did not assess need or service requirements for people with MS. Comprehensive studies of needs of people with MS have been conducted in both North America (Kraft, Freal and Coryell, 1986) and the United Kingdom (Elian and Dean, 1983) but not in the Australasian region.

Providing rehabilitation for a chronic and progressive disease which, in its early stages, shows few physical signs of disability has proven a difficult task for support organizations in Australia and is made more difficult because of the lack of published studies which identified the needs of people with MS in the community. …