Background

Many of the children coming to a specialist children's hospital or unit, particularly inpatients, are “disabled”. Disabled in this context means that the children have medium or long term limitations to their mobility and ability to care for themselves. Their problems and needs are complex and multiple. They require a multidisciplinary team to assess and manage problems. These problems often have a serious impact on their own and their family's lives. Families may be disadvantaged potentially by both the process of coping with disability and the difficulties of obtaining medical care. It is likely that any single specialist group within the hospital will not identify all of the problems that are experienced by families.

International perspective on disability

The United Nations General Assembly agreed on 24 December 1993 (Resolution 48/96) some standard rules for the equalisation of opportunities for persons with disabilities. The document published in 1994 gives a straightforward account of the rules.1 To convey a flavour of these, rules 2 and 3 on medical care and rehabilitation are reproduced as an , but the whole document is relevant.

The European Community Guidelines on disability services clearly follow those of the United Nations. A major theme to the relationship between medicine and disabled people internationally is that it is a partnership between those involved. This is based on the following premises.

(1)

Many of the needs of disabled people and their families are not medical but social, educational, and financial. Prioritisation of these needs requires input from the client group, and hospitals need to be fully aware of these multiagency issues.

(2)

The medical issues may be framed by doctors in terms of specific medical problems rather than problems as they affect families. In this context, voluntary organisations have had an increasing impact on medical practice. For example, specific disease/syndrome groups have identified characteristic behaviours in their children and asked that medical professionals consider these because they are their priorities.2 These initiatives have set the agenda for much current research.

(3)

Many medical advances in treatment produce greater degrees of dependency, which, although hopefully transient, create disability. We need insight into these problems from carers and patients.

(4)

Medical assessment and treatments are becoming increasingly complex and sophisticated, and this level of specialisation has absorbed much of the resources of medicine. Medical organisations may be ill equipped to manage the inevitable non-medical problems that children and carers bring with them to the hospital. Nevertheless, home and community factors may determine the long term outcome of medical intervention—for example, the use of multilevel orthopaedic surgery in the cerebral palsies.3

(5)

Most of the life and care of the children and families takes place away from a tertiary hospital, and guidelines and liaison services need to make sense of all these factors.

(6)

It is a basic human right that, when loss of control over one's body occurs, this is handled in a way that gives the client and carers maximum ability to influence decisions about how these matters are handled.

There are important lessons to be learned from the provision of rehabilitation services to people with disability in developing countries. Full participation by the community served, particularly including users—that is, parents and children—in planning and implementation of such a programme is regarded as mandatory in this setting.4 There seems to be no difference in principle about the style of service required in the United Kingdom.

The myth of the acute hospital

There may be a lingering view that the main role of a specialist paediatric hospital …