JRSM >
Volume 94, Number 12 >
Pp. 659
Rehabilitation Division, School of Medicine, University of Leeds, 36 Clarendon Road, Leeds LS2 9NZ, UK
E-mail:m.a.chamberlain{at}leeds.ac.ul
Professor David's editorial is timely (August 2001 JRSM, pp. 373-374). Young disabled people currently get a raw deal, not least because of difficulty using the healthcare system to their advantage. There are two issues that need to be addressed—the transition from a specialist paediatric service to the corresponding adult service1; and the transition of the child with disability or continuing disease to adulthood2. The latter is a much more complex task3; whether it can or should be done solely in a hospital specialist clinic is doubtful. Specialist clinics need to be linked with generic services that have a brief to respond.
Designated specialist community teams with this brief have been in existence for over a decade. They are usually led by rehabilitation medicine physicians whose main focus is the disabled adult of working years. These interdisciplinary teams are expert at dealing with the numerous problems of these young people and they work to the young persons' goals. Often the aims include not only educating young persons to manage their own disease and medication but also wider issues such as gaining independence in day-to-day activities (it is not realistic to expect that all, particularly those with neurological disease, can do this on leaving paediatric services) and enabling young persons to structure their own lives and manage their time appropriately.
These interdisciplinary teams may be involved with the young person and his or her family over an extended period (often several years). The latter is important as often the young person with chronic disease may use disengagement from the health system as a mechanism for protest if unable to achieve this by other means. In addition, particularly for those with cognitive and physical problems, acquisition of essential skills may take a long time. This is usually not possible in primary care where focus is often episodic. These teams work flexibly so that therapeutic intervention can be provided in a variety of settings (at home, at work or in education). This is important in preventing the individual from becoming overdependent on health-based services. The teams establish an extensive network of communication with schools and paediatric services to establish protocols for transfer. They often have open access to their services and cross many interagency boundaries (further education, employers, transport, social services, charitable organizations and so on). Do they work? Informal evidence suggests that the young people engage more in areas such as higher education and employment when such teams are involved. This observation is confirmed by our recent NHS R&D centrally funded controlled study showing that intervention by interdisciplinary teams with a specific remit for the disabled school leaver increase societal participation.
In summary, the rehabilitation medicine physician and specialist young adult services can complement disease-specific transitional services set up through paediatrics to help adolescents and young people with disabling chronic diseases fulfil their ambitions.
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