Service provision for adults with long-term disability: A review of services for adults with chronic neuromuscular conditions in the United Kingdom

The purpose of the study is to determine the level of service provision for adults with neuromuscular disease in the United Kingdom. The method is questionnaire survey of clinicians running specialist clinics for adults with NMD. Specialist services are mostly concentrated in areas of high population density with rural areas being less well served. Access to specialist clinical services is generally good, although funding for respiratory support is erratic. Joint paediatric/adult or adolescent clinics are relatively uncommon. Availability of therapists with an interest in muscular disease is variable. There are long waiting times for powered wheelchairs in many areas. Provision of disabled parking spaces was thought to be inadequate in most hospitals. Current service provision is inadequate to meet the complex needs of this patient population in the UK. Particular areas of concern are the transfer of care from paediatric to adult services and the availability of experienced therapists.