Together for Short Lives has launched a new edition of the world’s first care pathway for children with palliative care needs – A Core Care Pathway for Children with Life-limiting and Life-threatening Conditions.
First issued in 2004 and reissued in 2007, the Care Pathway is the children’s palliative care sector’s ‘gold-standard’ guide for professionals planning and delivering care to a child with a life-limiting or life-threatening condition and their family. This third edition of the Care Pathway reflects the latest developments in care as well as responding to family feedback about difficulties encountered in their palliative care journey.
It is estimated that there are at least 49,000 children under 19 in the UK with palliative care needs. Coupled with this, there are over 300 conditions which fall into the life-threatening or life-limiting category. The new Care Pathway is invaluable to the important work in this sector as it is relevant to each and every child in these circumstances, no matter what their age or condition. It is designed as a framework for local teams to develop their own pathways.
This Core Care Pathway is a key resource for those providing care to children and young people with palliative care needs and for those commissioning, planning and funding services. We know how challenging it can be to co-ordinate services to be able to deliver holistic care to children and families. Families have told us that they can deal with up to 35 professionals during their care journey, this pathway helps to co-ordinate this care, meaning they can spend precious time together.
Katrina McNamara, Director of Practice and Service Development at Together for Short Lives
Together for Short Lives’ research[1] has shown that care co-ordination can be one of the most daunting and often unsuccessful elements of a family’s palliative care experience – dealing with a wide range of care providers who may approach the same issue differently or treat the child in an unfamiliar manner can provide undue stress in circumstances that are already potentially traumatic and upsetting. The revised Care Pathway helps to address this and provides a blueprint for the integration of care by setting out a framework for care delivery across the sector – encompassing health, education and social care.
The Care Pathway also now addresses bereavement needs – exploring this important part of a family’s journey in great depth. As a result, professionals will now be able to use the Care Pathway to support families beyond the death of their child and ensure they have access to all relevant support networks.
Importantly, the Core Care Pathway will enable the delivery of individualised, need-focussed and locally-adaptable care, for the entire palliative care journey – from the moment of diagnosis to end of life bereavement – with the child and their family at the centre throughout.
Alison Cooke, Director of Care at Rainbows Hospice for Children and Young People says:
“I was delighted to read the third edition of the Pathway – it has a really positive feel. It presents clear guidance around managing the processes involved in supporting children, young people and families who are living with an uncertain future, and has a proactive, multiagency, ‘joined up’ approach to working as partners with families in their child’s journey.
In this edition, there is an emphasis on making the most of the time that the family has together. The focus on robust risk assessment and parallel planning means that professionals like myself can feel confident in presenting families with opportunities that will enable them to truly live their life to the full, whilst supporting them to acknowledge their child’s prognosis and make informed decisions about end of life treatment and care.”
An electronic version of A Core Care Pathway for Children with Life-limiting and Life-threatening Conditions can be downloaded for free along with an array of other useful end of life prompts and resources.
[1] Taken from Together for Short Lives Square Table discussions that have taken place across the UK (http://www.togetherforshortlives.org.uk/news/2285_new_report_families_struggling_to_navigate_complex_system)
