The needs of young people with disabilities in transition from paediatric to adult services

Abstract

Transition to adulthood requires consolidation of identity, achievement of independence establishment of adult relationships and finding vocation. Those with disabilities and health problems experience difficulty in this through lack of social opportunity. There are 340,000 affected UK individuals of 16-29 years. Most, having survived childhood disability, may experience later deterioration in functional level. Most will require long term monitoring. Health needs include treatment for the complications and progression of their condition, appropriate treatment for everyday, and unrelated diseases, and health maintenance knowledge. Leaving a cohesive paediatric service and entering the uncoordinated adult health services has been described as hurtling into a void''. Therefore, number of health service models have been proposed, including the person-focussed model, a disease-focussed model, a hospital-based model, a team-based outside the health service, a named person, a voluntary organisation and a primary care model. For those with complex disabilities an interdisciplinary team comprising a consultant in Rehabilitation Medicine, (who will facilitate referral to other medical consultants) occupational therapy, speech therapy, psychology and social work input with support from physiotherapy and nursing addresses all these needs. Young Adult Teams can both teach skills, and facilitate health and other service usage. This whole area of work is under-researched. The outcomes for disabling childhood conditions must be investigated, and planning for adulthood must influence the pattern of care in childhood. The most urgent need is to set up effective services for young adults, which will help to ensure that their 50 years of adulthood have quality of life.