UK – Research published on gaps in paediatric palliative care provision and barriers to access

Categories: Research.

Between 2011 and 2013 Martin House undertook research into paediatric palliative care and support in Yorkshire and the Humber.

The research collected information about the range of services available to children and young people with life-limiting conditions and their families living in the region and explored the views of professionals and families about the care and support available, as well as the strategies and resources families draw upon in order to access the support they need.

The project builds on the findings of an earlier service evaluation of Martin House, highlighting the uncertainty faced by families about the roles of different service providers.

Commenting on the findings, Chief Executive Angela Monaghan said: “Families questioned in the research identified difficulties in accessing specialist medical and nursing care as a barrier to effectively supporting their children. Another key finding was the variation in care and support offered to different families, even among those whose child had the same condition or similar needs.” 

Recommendations

A report on the hospice’s research details 16 key findings, and four recommendations:

  • Specialist paediatric palliative care services must be made available to a greater number of children and their families, and be available around the clock.
  • To ensure more equitable provision of care and better standards of care, we must develop better signposting and information for families, more consistent referral criteria, and access to high quality training for staff working with families.
  • To ensure families receive the right combination of specialist and generic support, we need to raise awareness of paediatric palliative care across all the organisations supporting families.
  • Establish paediatric palliative care co-ordinators, working across organisational barriers, to ensure families are effectively supported in future.

These findings were presented earlier this month by Angela Monaghan at a conference hosted by the hospice. The conference was attended by more than 50 key professionals within the children’s palliative care sector and involved discussion of specialist children’s palliative care services across Yorkshire and how they should be organised.

Martin House aims to use the research to identify pathways for the future, with local areas having an offer suitable for every family. The hospice plans to work in collaboration with others to consider the implications of these findings for both the future strategy of the hospice and services across the region.

Speaking at the conference, Angela said: “We hope today our research, together with input and discussion from delegates, will identify the number of services needed to cover Yorkshire and the gaps in provision between what we have and what we want.”

The full report and a project summary can be downloaded from the Martin House website.