Children with serious illness risk being overlooked in a system built primarily for adults and too many families are still unable to access the high quality, consistent care they need. Today, we are launching the next phase of our strategy to change that.
Making Every Moment Count sets out how we will work with families, professionals and partners across the UK to drive real improvements in children’s palliative care. Shaped by the voices of families and professionals, it brings renewed focus to our purpose: ensuring every child, and their family, can access high quality palliative and end of life care, when and where they need it.
Fewer than half of families caring for a child with serious illness say they feel well supported, and where a family lives can still determine what care they can access. In England, only around one in five local NHS bodies commission 24/7 end of life care at home for children that meets national standards.
Our strategy sets out three areas of focus:
- Direct support, by providing information and support to families of children living with serious illness, signposting and referring into existing services and working to fill gaps in provision.
- System change, by becoming a renowned Centre for Evidence & Practice, collaborating, commissioning and sharing significant research and evidence to drive clinical excellence and policy design – and working with leaders in governments, the health service, commissioning bodies and delivery organisations to improve the funding, quality, and consistency of children’s palliative care.
- Generating income, by building impactful relationships with partners, funders and supporters who stand with us to drive meaningful change for children and families.
Nick Carroll, Chief Executive of Together for Short Lives, said: “Children’s palliative care has been held back for years by structural problems, from inconsistent commissioning and poor data to the absence of shared workforce standards. Solving it will take a sustained collaborative effort, but the approaches we’ve set out in our renewed strategy today are the building blocks for a more sustainable sector, ensuring that in future no family is left navigating uncertainty at the hardest time of their lives.”
Find out more about what Making Every Moment Count means for children’s palliative care, and how you can be part of it.
