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 is to provide a single decisive medical or surgical intervention that cures the patient. Many of the children attending are disabled by anyone's definition. They have a range of motor, cognitive, psychiatric, and behavioural problems, whatever the specific reason for coming to us. However, much of medicine today involves participation in a long term “contract” with the family in the management of their child's oncological, metabolic, cardiac, renal, orthopaedic, psychiatric, etc problem. It is a disability model with acute episodes. The practice of many units and support services recognises these issues, but the overall organisation of the hospital may not. It is proposed therefore that a specialist children's hospital should be primarily geared to provide appropriate support for disabled people and that this will create a more appropriate, friendly, and responsive service for all clients. This would also structure the approach of all staff.

What would such an approach mean?

 (1)  Travel and access would be investigated and proposals made to provide cheap and readily available transport. This may create the need for a wider range of family accommodation and for minibus services, as well as appropriate car parking. If examined nationally, there may well be issues about the costs of public transportation, which should be dealt with.

(2)

Units should survey and analyse the needs of families looking at the distances, the reasons, the practical difficulties, the financial impact, and emotional issues involved.

(3)

There would need to be direct involvement of families in the development of services in the hospital in order to: (a) help in the training of all members of staff; (b) advise over the timing and organisation of clinics; (c) assist with communication; (d) advise on the physical facilities and equipment within the hospital; (e) assist with retail and other service provision on the site; (f) advise about restaurants etc; (g) advise on parent accommodation; (h) maintain a system that keeps the hospital informed on these issues by providing continuing feedback from parents.

Using national parent support organisations, systems need to be developed that provide truly representative parental views.

(4)

Our pattern of outreach and shared care work should be based on the assumption of disability being an important factor and developed on the basis of partnership as outlined above. Thus an important aim of outreach is to ensure equity of access to services.

(5)

Any negotiation required with the local authority—for example, with respect to the need for car parking—will be on the basis of the agreed needs of disabled people. Specialist hospitals would create a disability forum, in which the definition of disability is widened to include those with short and medium term impairments through illness, and this forum would include organisations concerned with disability.

The way forward

Professionals, units, and hospitals concerned with specialist children's services do their best to take account of these issues, but the systems for developing multiagency, parental, and community involvement are not in place. It is inappropriate and inefficient to have to create systems and working parties to deal with multiagency issues in modern hospitals. These systems with parental and community involvement should be an integral part of the structure.