Objectives To co-develop a Transition pathway for adolescents with complex medical needs and learning disability in East London, we conducted a qualitative survey with patients and parents/carers regarding their experience of transitioning from Children’s to Adult Health Services in the Community.
Methods The Transition Care Nurse conducted telephone interviews with adolescents and their parents/carers who had recently been discharged at 18–19 years from Community Children’s Services in East London, and who agreed to participate.
The survey comprised 10 open-ended questions around the theme of experience of transition, including what went well or could be improved.
A thematic analysis of interview transcripts was undertaken to find key themes and learning for developing our Transition pathway in the community.
Results 10 participants agreed to be interviewed between February 2022 and April 2022 - 1 young person aged 18 years with cerebral palsy, and 9 parent/carers of young people with severe learning disability, limited communication and complex conditions including Cerebral Palsy, Down syndrome and Epilepsy.
Understanding of the term ‘transition’ – 30% had not heard of the term. 1 participant understood it as ‘leaving school and getting different doctors’. Another, ‘changing to adulthood’. All participants fed back that they were not provided a clear definition of ‘Transition’.
Feeling unsupported after being discharged from Paediatric services – 70% of participants felt unsupported and reported feeling ‘let down’ and ‘frustrated’ not just by the Health service, but also Education and Social Care services.
Little/no information available – All participants said they were given little/no information about what to expect nor who would be providing Health or Therapy services after the young person turned 18 years.
Disjointed/lack of coordination between services – 50% of participants reported persisting issues with the flow of health services post-transition and poor coordination between Health, Education and Social Care. One parent explained how health appointments had stopped at 18 years and they were not informed why. Another parent stated her son suddenly had lots of appointments with different health services and this was difficult to manage.
The direct feedback from the young person was consistent with the feedback from parents/carers. Participants said that more information, preparation beforehand, and a more coordinated approach would have improved their experience of Transition.
Conclusions The Transition process for young people with complex medical needs and disabilities is extremely complicated due to multiple services being involved in providing support for the family during childhood. Transition processes for health services for this group of young people is closely linked to transition processes in Education and Social Care, due to the nature of their complex needs and social determinants of health. The voice of the young person with learning disability also needs to be included in co-production of a Transition pathway. Having a clear transition pathway with adequate information about services and available support, and a key contact (eg. Transition professional) would be welcomed by patients and parents/carers to improve the inevitable Transition process from Children’s to Adult services and achieve best possible outcomes in adulthood for adolescents with complex medical needs and disability.
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