NECESSARY SUPPORTS

Satisfactory care at home for an individual with an advanced or terminal neurological condition will usually require, or benefit from:

1. 24-h availability of a competent carer: In modern family structures, it is not uncommon for individuals to live alone. For the care of an individual with advanced neurological disease it will usually be necessary for there to be an effective carer available at all times. If funding allows, this need may be met by a round-the-clock roster of nurses or paramedical staff; more often it will depend on the availability of family members.

2. A suitable home environment: This may need to allow accessibility by a wheelchair from outside, and free movement within the dwelling on one level, availability of private and quiet space, opportunity to install special equipment (e.g. railings, a hospital bed) and suitable bathroom and toilet facilities.

3. Regular availability of dependable visiting support services; for example community nurses, family medical practitioners able to undertake house calls, equipment services.

4. Availability of 24-h specialist telephone advice from a member of a team familiar with the patient's situation, who is able to access basic records and is knowledgeable about palliation measures.

These requirements will frequently not be available. Many homes are hardly suitable for satisfactory home care of advanced disease. They are too small, or too cluttered with necessary furnishings to accept helpful equipment (even if it was available). Some will be in a high-rise building and not served by an elevator.