Supporting individuals with disabling multiple sclerosis

Abstract

People with disabling multiple sclerosis (MS) can lead rewarding and fulfilling lives. To this end, they will do best if they adjust early to the diagnosis and its implications, if disabling symptoms are kept to a minimum and if they get all possible support (including the use of assistive technology) from both professional and voluntary sectors. Support may be needed by those whose disability is static, those who have relapsed and those whose course is progressive. This review explores how this can sometimes be achieved. The diagnosis of MS is a devastating event for individuals, their families and friends1,2. Its unpredictable course creates difficulties for psychological adjustment and for planning appropriate support3. The development of new disease-modifying drugs seems to have reduced relapse rates for some but may not alter long-term disability. Advice regarding the use of disease-modifying agents is beyond the scope of this review but has recently been distributed in the UK4. Only a small proportion of people with MS proceed to severe disability, many remaining independent 20 years or longer after diagnosis. However, subsequent progression to more severe disabilities is the experience of many. Rehabilitation is effective in reducing ‘disability and handicap’5 and ‘disability’6 and is an essential part of management1. Living with MS typically is complicated by3: Initial difficulty in making the diagnosis Uncertainty of relapse, remission and progression Absence of cure Diversity of symptoms and disabilities Many family doctors having little experience of the disease Neurologists having inadequate time with individuals initially and for follow-up Complex co-morbidity—e.g. depression and pain. As traditional medicine aims to provide ‘disease intervention’, many doctors feel ill equipped to help those with an incurable disease3. Much, however, can be done to help; and, because of the diversity of cognitive, physical, psychological and social problems experienced, rehabilitation requires a coordinated multiagency approach by health and social services3,7 including: Acute general hospital (diagnostic and support teams, e.g. urology) Inpatient rehabilitation services linked to Community rehabilitation teams Daycare or domiciliary respite (e.g. crossroad care attendants) Residential respite care. Consequently, matching the individual's needs to relevant services is crucial to the success of rehabilitation with different services needed, for example, to restore function after a relapse, to facilitate living with a chronic disability, to respond quickly when there is rapid deterioration and to provide assistive technology (e.g. wheelchairs). Each function should be part of a coherent service7.