Background Young people with complex long term conditions, severe learning disability, technology dependence and palliative care needs present specific additional challenges, making them difficult to transition to adult services. This cohort lacks a single unifying diagnosis making them difficult to identify.
Aims To develop a reliable, reproducible method to identify young people of transition age with complex neurodisability
Method Lists of young people aged 14 or over from community physiotherapy, special school, specialist and palliative care clinics were merged. Antenatal mothers, patients who had not attended in the last two years or who had died were removed. The cohort was validated by community children’s nursing teams.
Patients were identified using the criteria:
Severe or profound and multiple learning disability
3 or more specialist services
Life threatening or life limiting condition
Gross motor function measure 4 or 5
Results 56 young people were identified. Accurate information on learning disability, physical disability, technology dependence and oxygen use was inconsistently recorded in clinic letters. The majority of young people aged 18 or over but none aged under 16 had evidence of transition discussions. Several young people had clinic documentation indicating professional reluctance to transition to adult services because of a lack of appropriate services in the adult sector or a specific application to allow the young person to continue to access childrens services as there was no appropriate service in the adult sector.
20 (36%) were young people aged 18 years or older who were “stuck” or “delayed” in children’s services due to a lack of suitable target services in the adult sector. Approximately half of this group were oxygen dependent.
Conclusion Young people of transition age with complex neurodisability can be identified from routine hospital data. However the required information is not consistently recorded in any one place and the absence of information cannot be equated with the absence of need.
Transition to adult services for this cohort of patients is only being actively considered when the young person is 17 or 18 in contrast to other patients where a recognised transition pathway is in place (e.g. neuromuscular patients) where there was clear evidence of transition discussions from age 14.
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