Bridging the Gap, funded by Together for Short Lives and published today, brought young people with life-limiting conditions together with professionals from children’s and adult palliative care, to share their experiences of transition.
Commenting on the findings, the researchers call for adult palliative care services to extend their scope to better meet the needs of young people with life-limiting conditions and their families.
Results show that planning for the move from children’s to adult palliative care was often not focussed on the young person and what they wanted or needed.
Many young people did not have a ‘key worker’ or someone to support them in organising their transition, so it was easy for them to get lost and fall through the gaps.
Adult services geared towards older people
Young people and parents also highlighted the differences between children’s and adult palliative care services and how this affected them. Examples include:
- Young people with life-limiting conditions were used to ‘parallel planning’ whereby children’s palliative care services provided holistic support from diagnosis
- Young people said that holistic palliative care services for the entire family that had been of great benefit during childhood frequently ceased on transfer to adult services.
- Adult palliative care services are more geared to meet the needs of older people with conditions such as cancer or heart failure towards or at the end of life.
- Adult palliative care professionals are experienced at managing conditions such as Muscular Dystrophy but less familiar with managing relatively uncommon life-threatening conditions that originate in childhood.
To raise awareness and to help bridge the gap between children’s and adult palliative care services, Bangor University have produced the following free resources for use by professionals, young people and families:
- A short film to show how important good palliative care transition planning is from the perspective of young people and their parents.
- ‘Bridging the Gap’ guide and toolkit for professionals, which covers the commonly forgotten elements of palliative care during and after transition, and the important principles of person-centred planning, communication and the purpose of a key worker.
- ‘Bridging the Gap’ project report describing the project and key findings.
Young people ‘fall through the gaps’
Professor Jane Noyes from Bangor University’s School of Healthcare Sciences said that bringing together children’s and adult palliative care professionals with young people with life-limiting conditions and parents was invaluable:
“Children’s and adult palliative care services have grown up separately with different groups of people in mind. It is not surprising that adult services find it challenging to accommodate young people with life-limiting conditions that originated in childhood.
“Young people with life-limiting conditions and palliative care needs simply fall through the gaps during transition from children’s to adult palliative care services. Adult palliative care services need to extend their scope to better meet the needs of young people with life-limiting conditions and their families.”
Lizzie Chambers, Development Director & Executive Director of the UK Transition Taskforce at Together for Short Lives added:
“This research highlights the urgent need to build stronger bridges between children’s and adult services for young people with life-limiting conditions. The Together for Short Lives Transition Taskforce is dedicated to making this happen across the UK so that young people can live their lives to the full. We welcome these resources which will help organisations to work together to develop services that have young people at their very centre.”
For further information contact the principal investigator Professor Jane Noyes at Bangor University 01248 388519 e mail: jane.noyes@bangor.ac.uk
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