Over the past three years Wirral Hospice St John’s and Claire House Children’s Hospice have collaborated on projects aiming to provide continuing care for young adults transitioning from paediatric to adult services. The success of this project has been previously presented; the feedback has been overwhelming positive. This initial cohort was comprised of patients with severe learning difficulties and support for parents was a significant focus.
We now recognise the need to extend this offer to other young adults entering the transition process.
The next phase aims to engage with young adults with Duchenne Muscular Dystrophy (DMD). DMD is a genetic disorder characterised by progressive muscle degeneration typically presenting in childhood. Until recently survival beyond teenage years was unusual, thanks to advances in respiratory care, life expectancy now stretches into the third decade.
Our aim was to engage young adults with DMD in adult palliative care services. We provide physical and psychological support for young adults and their families, as well as offer engagement in advance care planning. We recognise the shift for families, as care becomes more patient rather than family-focused and aim to support young adults as the expectation moves to them taking responsibility for their own care.
This project is ongoing. Four young adults with DMD are engaged in adult palliative care services. These patients have seen consultants initially then linked into dietician, counselling and physiotherapy support as appropriate. Connections made with adult specialist services and when admission to hospital has been required, specialist palliative care has supported. Support has been offered to parents. This has presented challenges for adult services in terms of equipment/services offered; we continue to adjust to the requirements of younger patients.
There is significant unmet need for young adults facing the daunting prospect of leaving paediatric services, this project has shown that palliative care services can work together to improve this transition.
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