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- adult neurological services
- chronic neurological problems
- paediatric neurological services
- paediatric neurology
Drs Tuffrey and Pearce are timely in their comments about the importance of structured transition to adult orientated services for young people with chronic neurological disease.1 We agree that this is a significant problem, and that proper transition (including pretransition planning, transition planning at the appropriate time and multidisciplinary working) must be achieved to maximise the young person’s integration into society. There is abundant evidence that those lost to follow up present later with treatable complications of their conditions.2 It is also known that health status and psychosocial factors have a proved impact on the social participation of young disabled adults.3
There are a number of well established and well researched models of multidisciplinary team care for young adults in transition with disabling conditions including neurological conditions, such as cerebral palsy, spinal bifida, and muscular dystrophy. The consultant in rehabilitation medicine is well used to working with multidisciplinary teams, in a manner analogous to the paediatrician. An evaluation of a team approach versus ad hoc health services for young people with physical disabilities, in six areas of the UK, which was published in TheLancet in 2002,4 demonstrated that participation in society was increased threefold for no additional financial cost where organised transition services were involved, compared with non-coordinated care.
A team has been in place in Leeds for 14 years. It includes professionals including physiotherapists, occupational therapists, clinical psychologists, and speech and language therapists, and sessions of general practitioner health promotion and family planning. The needs of the population served by this team are wider than traditional medical care, and liaison with social services and education authorities is essential. Issues of access to employment and training, occupation of leisure time, relationships, sexuality, and independence are routinely addressed.
Consultants in rehabilitation medicine have the diagnostic and management skills necessary to coordinate the health care of these individuals.5 They liaise with other medical and surgical specialties, including orthopaedics, urology, gastroenterology, respiratory medicine, and neurology. Their training allows them to identify and treat many of the well recognised health problems, including secondary musculoskeletal complications, pain, spasticity, and urological as well as neurological problems. They analyse gait and posture, and prescribe orthoses and special seating. They also prescribe assistive technology. Their paradigm of treatment is not restricted to disease per se, but addresses the whole spectrum of impairment, activity (disability), and handicap (participation).
Tuffrey and Pearce are right to point out that the survival of disabled children into adulthood is a challenge to the existing organisation of adult health services. It is our duty to maintain good standards of medical and health care and to enable such individuals to lead as fulfilled a life as possible. The evidence for the value of coordinated transition services for individuals with disabling condition exists and should be widely applied.
We are grateful to Drs Kent and Chamberlain for their comments in response to our paper.1 Young adult teams (YAT) are indeed an effective way to provide coordinated medical care for some young adults with neurological conditions. Unfortunately as Chamberlain and colleagues correctly point out in their paper,2 this provision is currently only available in a few areas of the UK so for many young people referral to such a service is not an option. Although we do not dispute that rehabilitation physicians are skilled in dealing with many of the secondary complications of longstanding neurological conditions, young adults with additional moderate or severe learning difficulties may not be so well served.
Since YATs have been shown to enhance the quality of life of these young adults as well as being cost effective, it is essential that all areas of UK should be working towards providing similar services for all these young people. Paediatricians, physicians, and the various other professionals working with the different age groups can then work together to ensure that transition care pathways are developed and appropriately evaluated.
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