Many people with MS will need professional support services and assistance at some time, to manage the changes in their lifestyles, and to monitor effects of any new drugs. Depending on the precise nature of your MS and its effects, such services may include nursing, physiotherapy, occupational therapy, speech therapy, psychological assessment and support, counselling and advice on housing, employment, financial and other similar issues (see later chapters). Such professional support services for all the many consequences of MS have not previously been adequate, in fact often woefully inadequate and ill coordinated. Despite serious financial constraints, there are now many attempts underway locally to provide better coordinated services and support.

Rehabilitation

‘Rehabilitation’ is perhaps the new watchword of longer term care in MS. Broadly it means professional care targeted to achieve your maximum potential. Regional Rehabilitation Units have been created in recent years for the support of people with many conditions, but there are also an increasing number of more specialist MS rehabilitation units or programmes. At present there are only a limited number of places available on these rehabilitation programmes, and there is a selection process involved, usually on the basis of who might be expected medically to get the most benefit.
During inpatient rehabilitation you would normally be in a hospital or rehabilitation centre as a patient for some weeks, depending on the programme, your MS and how you progress. In this time you might be offered:

• regular assessment and monitoring of your condition
• carefully targeted drug therapies as appropriate
• intensive physiotherapy and occupational therapy
• nursing care
• possibly speech therapy, and
• psychological and counselling support.

Within a structured programme the aim will be to tailor aspects of this programme to your individual situation and needs. Following the time spent as a patient, you would probably have periodic further assessments to determine how you are progressing. Increasingly MS clinics are being opened in major centres providing support for more people with MS than is available on a lengthy inpatient basis. The aim is to undertake systematic rehabilitation here on an outpatient basis. There is a concern that outpatient care may not be sufficiently intensive to produce major change in functioning.

How useful is rehabilitation?

There is increasing evidence that rehabilitation programmes provide some benefits for people with MS. Studies of rehabilitation programmes are very difficult to undertake in MS for various reasons:

• People have very different types of MS, and it is still unclear as to who would most benefit from the programmes.
• There is no completely standardized programme of rehabilitation.

Studies that have been undertaken so far appear to suggest that a range of benefits arise for many people in the short to medium term but,
after 1 year or more from the end of an inpatient programme, there is decreasing difference between those who have been through the programme and those who have not. Almost as soon as people with MS are discharged from rehabilitation programmes, they begin gradually to lose the gains that they had from the programme. This is not really surprising because, back home, they do not for the most part have the intensive care available in the programme, and all sorts of other issues intervene to complicate people’s lives. This is why there is an increasing emphasis on outpatient care through MS clinics and MS ‘drop-in’ centres to provide ways of continuing to offer ongoing treatment.
Further studies in this area are being undertaken to see whether there are particular symptoms or abilities that benefit over the longer term more than others from rehabilitation programmes, and which people with MS might benefit most from them.

Going into hospital

Given the range and increasing complexity of tests and treatments, a stay in hospital – even as a day patient –is not uncommon and, if such a stay can be organized over a period of 2 or 3 days, it may be easier for both your neurologist and you to have these undertaken in hospital rather than on an outpatient basis, although outpatient visits will subsequently be necessary. Some treatments are given in hospital. However, neurologists do not agree on how long that hospital stay should be; some feel that the drugs can be administered with very short stays (a matter of hours), while others feel that a day or two to a week, depending on the therapy, may be necessary. Some people with MS may need to go to hospital for investigation of particular symptoms (e.g. urinary problems).
In general, there is very substantial financial pressure, among other issues, to reduce both the number and length of stays in hospital. So, where possible, your hospital stays will be shorter except when you go in for inpatient rehabilitation (see above) and more and more people are given self-injection teaching where necessary.