In north east London there are around 3,300 children and young people living with a life threatening or life limiting condition, and this is increasing year on year.
Through this work engaging with users of services and families led by Haven House and Richard House Children's Hospices, the paediatric palliative care needs assessment demonstrates a better understanding of unmet care needs for the children and young people using end of life care services.
By exploring the current experiences of families receiving care, along with the experiences of professionals involved in delivering services in palliative and end of life care, the team undertaking this work evaluated the effectiveness of provision and identified key opportunities to work collaboratively to better meet needs in the future.
Kath Evans, Clinical Lead for Babies, Children and Young People at NHS North East London says
“this work provided the opportunity to make sure we really understood how life limiting conditions and end of life care impacts the whole family. When the aim of care is not curative, insight and information for families about access to the range of palliative, end of life and bereavement care services is essential.
We are grateful to families who, by insightful conversations, confirmed the importance of professionals sharing information about services, and encouraged stronger connections across community, palliative and specialist services to ensure consistent access to symptom control, psychological support and choice in where and how care is received’.
The Paediatric Palliative Care needs assessment report identifies a number of key themes along with actions to make improvements. Work will now start to implement these recommendations, as well as continuing to have discussions with children, their families and professionals on what more we can take forward together to ensure the best possible experience and care for all our babies, children and young people in north east London.
Read the full report or watch the summary animation on our website.