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Service use and needs of people with motor neurone disease and their carers in Scotland
- Authors:
- van TEIJLINGEN Edwin R., FRIEND Elizabeth, KAMAL Ayesha D.
- Journal article citation:
- Health and Social Care in the Community, 9(6), November 2001, pp.397-403.
- Publisher:
- Wiley
Reports on a national study of patients with motor neurone disease (MND) and their carers which was conducted in Scotland in late 1996. A questionnaire covering areas such as: use of medical, social and voluntary services; use of or waiting for specialised equipment; satisfaction with provided services; and standard demographic data was used in face-to-face interviews conducted by the four Scottish Motor Neurone Disease Association care advisers. The care advisers also assessed the respondent's level of impairment, using a standard instrument: the Amyotrophic Lateral Sclerosis Severity Scale (ALSSS). The data was analysed using SPSS-PC. In total 153 people participated. Results found health services did not meet the needs of respondents of 19% of the cases and social services failed to do so according to 24% of respondents. Eighty percent of patients with MND had an identified carer. Nearly four of 10 of these carers had their sleep disturbed regularly, and nearly a quarter of them would have liked to have more help. In addition, difference were found in service provision between the East and West of Scotland, and consequently differences in respondent's perceptions about the extent to which needs were met.