A growing number of children and young adults with life-limiting and life threatening conditions are now living into adulthood and evidence shows moving from children to adult services can be a particularly stressful time for them and their families.
Models of care used for these young people need to be adapted as they mature and begin to access adult services and their needs and preferences change. The stories of young people confirm they often fail to find the support and services they need from either children’s or adult services.
Our response to the need
Hospice UK believes every young person with a life-limiting or life threatening condition should have access to appropriate care and support reflective of his/her individual needs and preferences. To achieve this, Hospice UK has been working in partnership with Together for Short Lives and the National Council for Palliative Care since 2008 on a major piece of research undertaken by the Social Policy Research Unit at the University of York, known as STEPP.
The recommendations include a call for professionals to identify and work with young people’s preferred ways of involving their parents in decision making and improving experiences of inpatient hospital care.
In Summer 2012, Together for Short Lives set up the Transition Taskforce to try and bridge the gap and ensure better coordination between children’s and adult services and increase awareness of the issue. Hospice UK along with Marie Curie Cancer Care, National Council for Palliative Care and Preparing for Adulthood are partners on this project.
The STEPP Project briefing for the All Party Parliamentary Group on Hospice and Palliative Care is available to download.
Three year National Transition Project
The three year Transition Project commenced in late 2019 and runs until 2022, with the employment of a Project ECHO® Transition Partnership Manager. Hospice UK are developing a National Transitions Community of Practice (CoP) to transform care for young people with complex and life-limiting conditions.
There is an urgent need to drive improvements in the care and experiences of young adults with complex and life-limiting conditions, with a particular focus on improving the ‘Transition’ process which young adults undergo when moving from children's to adults’ palliative care services.
We recognise that the current guidance to improve services for Young People brought about many good examples and innovations in practice. Integration and collaboration has enabled positive change in service delivery and started to shape better experiences for Young People and their families.
Hospice UK is pleased to offer support to three Hub organisations to share their good work and learning with others using Project ECHO (Extension of Community Healthcare Outcomes) methodology.
(A 'Hub' is a regional center at which a multidisciplinary team of Transition experts are located).
This will extend reach and further influence partnerships across all care providers and key stakeholders. The three organisations were selected in October 2019, they will be tasked with developing ECHO transition networks with a view to having a far reaching and transformational impact on transitional care.
The project aims to bring together regional children's and adult hospices, local NHS service providers, educators, young people and volunteer groups, to build a community based Transition Community of Practice.
Hospice UK are working closely with Together for Short Lives as part of this work as both share a responsibility for supporting palliative care services across the UK.
Find out more about Project ECHO