Article Text
Abstract
Aims Young people with complex disability arguably face more difficulties in transition of care to adult services than young people with ‘single system’ transitions. Paediatricians may not know what is available or considered part of adult rehabilitation services. We compared the priorities of the paediatricians with adult rehabilitation physicians, to illustrate where similarities or differences in working practice and hence expectations exist
Methods Ten anonymised multi-disciplinary discharge reports for young adults with severe and complex neurodisability aged 19 to 25 years were reviewed by a physician training in adult rehabilitation medicine.
Their assumptions of care needed and what they could provide were compared with those assumed by the paediatrician in neurodisability, who knew the young person.
Results The paediatrician assumed the medical management of all young people would be overseen in an adult rehabilitation service. The rehabilitation medicine physician determined that the other care pathways would be appropriate in half of these.
Core themes emerged:
Care planning and goal setting is contemplated differently, goal setting being the focus of the adult physician.
Similar medical needs were identified, paediatricians being likely to identify gastrointestinal/scoliosis specific needs and rehabilitation medicine physicians on assistive technology or bladder care needs.
Expectations were determined differently with the adult physician focusing on multidisciplinary input and the paediatrician centred on participation and pain
Conclusions Rehabilitation physicians and paediatricians approach young people transitioning services differently. Assumptions about medical care are likely to impact young peoples’ experience of services, for example botulinum toxin injections may not funded, bespoke equipment not easily accessed and MDT input may not be delivered as recommended by the paediatric team in adult care settings. These differences in care provision can compound the difficulties experienced by young people transitioning into adult care. An awareness of these issues can facilitate an increase in ‘preparedness’ of young people moving to adult services improving patient experience and providing a platform for service improvement.