Introduction There is a recognised difference in the centralised children's services compared with the more localised adult services for those with neuromuscular diseases. At the young people's unit at Martin House transition is a difficult time with uncertainties about the availability and working practices of physiotherapy services for adults. With funding from the DoH as part of the £30million the physiotherapy services in Yorkshire and Humber were reviewed.
Method Contacts were made from a number of sources, starting with known children's services and an email questionnaire was sent. There was a small circulation of questions to users of the service.
Results There was excellent completion circulated after contact had been established by the researcher. • The paediatric service in the region is well coordinated with close links with respective neuromuscular teams. • The challenge of identifying the different adult services highlighted the possible difficulties faced by people with a neuromuscular condition. • There is variety in the provision and accessibility of adult services offered around the region. • There is a limited review/monitoring service in place for adults with only 42% of teams offering this. • 54% of adult teams are unable to provide on-going physiotherapy. They are usually goal- orientated and based on self-management which isn't always appropriate in a progressive deteriorating condition. • The lack of access to specialist physiotherapy in adult services is a problem for both community and hospice physiotherapists and patients. • Provision of Hydrotherapy is an on-going issue.
Recommendations • Consideration of a review/monitoring service for adults is needed. • Consideration of a transition service is needed. • There is a need to provide more access to specialist neuromuscular physiotherapists in adult services. • A maintained and accessible database of adult services for these patients should be made available to assist referrers.
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