To ask the Scottish Executive what services are available to help young people with Duchenne muscular dystrophy make the transition from childhood to adulthood
A new transition clinic in Glasgow has been established, along with young adult neuromuscular clinics in Dundee and Aberdeen.
A working group of the network has been looking at the general issue of the transition from child to adult services, with an initial focus on Duchenne Muscular Dystrophy (DMD). It has developed a transitional care pathway, to help young adults cope with the move between child and adult services. This work is supported by the transition information pack which the Muscular Dystrophy Campaign has recently developed, and which is currently being promoted through clinical teams and through the Muscular Dystrophy care advisors.
The network is also carrying out a project, funded by the government, aimed at increasing the uptake of self directed support amongst those with muscular dystrophy, as a way of promoting independent living.
Along with other complex long-term conditions which require integration of health and social care, the need for a key worker and care co-ordination has been identified as being key to the transitional care process. The network intends to engage with local area GIRFEC (Getting It Right For Every Child) co-ordinators to discuss how this can best be taken forward.
The issue of transition from paediatric to adult services across all specialist services is under consideration as part of the National Delivery Plan for Specialist Children''s Services. A working group has been tasked with developing proposals for the long-term care of those with complex and life-limiting conditions such as Duchenne. The national Managed Clinical Network for children with exceptional healthcare needs, which works collaboratively with the Scottish Muscle Network, is looking specifically at the transition of adolescents with complex needs into adult health care, to ensure adequate and appropriate provision is made.