MAJOR initiatives are necessary to alleviate the plight of multiple sclerosis sufferers, according to a report published yesterday.
Compiled by Mr Michael Shemeld of the Multiple Sclerosis Society in Cork, the report is the first comprehensive study of MS victims in the State.
Some 260 people with the condition living in Cork and Kerry were interviewed. According to Mr Shemeld, the information gleaned - much of it for the first time will be critical in the management of MS in the future.
Respondents to a questionnaire revealed that the take up of services and State benefits relevant to the needs of MS sufferers was low, and that in many cases people with the condition had only a limited awareness of their entitlements. The strictness of means tests was a major factor in the low uptake, the report said.
Almost two thirds of the respondents were women, of whom nine per cent lived alone; 29 per cent lived in rural areas; and 75 per cent were over 40 years of age.
Some 59 per cent of those interviewed had incontinence problems; 89 per cent had some disability with regard to locomotion; and almost half had problems with personal care, including washing and dressing.
More than two thirds recorded problems such as apathy and aggression, as well as difficulties in relating to family members.
The majority of those who answered the questionnaire had lost their jobs because MS directly impaired their ability to work.
Sufferers found that because of their condition, they incurred extra costs of more than £100 a month. Yet almost half the households surveyed had an income of £60 a week less than average.
According to the survey, geographical location was an important factor in relation to medical treatment.
In the west Cork area, only 39 per cent of people had seen a neurologist once, whereas in Cork city and south Cork, 69 per cent were able to see a consultant more often.
Of those who made changes in their living accommodation in order to cope with the condition, more than a quarter had to face costs in excess of £10,000, the survey found.
Recommending changes in the approach to sufferers, the report called for the Department of Social Welfare to recognise the extra costs incurred by people with the condition and suggested that increased social welfare payments should be made available. It also called for a multi disciplinary approach to the management of MS; the provision of sufficient and appropriate respite care facilities; an increase in the number of neurologists treating the condition; and better communications with general practitioners on the latest developments in MS management.