What do people with MS want and expect from health-care services?
Department of Social Medicine, University of Bristol
The range of needs and preferences was established during face to face interviews with people who have MS living in different parts of the country. Then a questionnaire based on this information was sent out to nearly 500 others. The high number of responders provided valuable information and it is clear that the desire for self-reliance and personal autonomy is strong and that most people are able to discriminate between treatments and assistance which are helpful to them and those which are not.
Equally clear evidence came from the research that people with MS derive benefit from feeling in control of aspects of their life and specifically by not feeling that they are a burden upon others. Unconventional treatments, for example, massage and reflexology, are found useful by many, but the most frequently requested health professional was a specialist MS nurse. And people STILL lack information and advice about specific areas such as exercise and urinary problems.
This two-year project, for which we received National Lottery Charities Board funding, is now complete.
Somerset M, Campbell R, Sharp DJ, Peters TJ.
What do people with MS want and expect from health-care services?
Health Expectations 2001; 4(1):29-37.
Somerset M, Peters TJ, Sharp DJ, Campbell R
Factors that contribute to quality of life outcomes prioritised by people with multiple sclerosis
Quality of Life Research 2003; 12(1):21-29.
