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Motor neurone disease does not usually affect intelligence and it is therefore vital that people with the disease are enabled to make their own decisions about treatment and care, and the changes made to their lives. They should be fully informed about the available treatments and encouraged to be as active as possible at all times. The care and support of family and friends is very important.

Employment, at some time, is likely to become impossible. This needs to be recognised and suitable arrangements for early, or medically-arranged retirement made if appropriate. It is important to get advice on benefits and relevant insurance policy claims so that the person with MND and their carers do not have the additional worry of financial difficulties to deal with.

It must not be forgotten that the carers of people with MND also have a great deal to cope with. It is distressing to watch the health of a loved partner or parent get worse over a period of months or years, and to be able to do nothing to stop the disease from progressing. Knowledge about the disease can help and carers may wish to learn as much about it as possible, since this is likely to benefit both themselves and the person with MND.

Hospice care
A hospice is a residential establishment where palliative care is given, and from where arrangements can be made for the provision of palliative care in a person’s home.

In the later stages of MND hospice care and assessment may be invaluable in helping to deal with some of the difficulties experienced by people with MND and their carers. The hospice staff are experienced, and know how to deal with the problems the person with MND and their family face. It is important to remember that these problems are not unique, and that many can be solved or eased.

Many people with MND spend a few days in the hospice and are then looked after at home by visiting staff from the hospice. The hospice can also be used to give carers at home a rest from time to time. The hospice staff will do their very best to accommodate the differing needs of different people in this respect, and most people find them very flexible and approachable.