We believe that no family should face their journey alone: we want to increase reach so that more children and families can access 24/7 palliative care.
Right now, there is a postcode lottery of support. Not all families are able to access the care they need. There is a growing demand on services because more babies are born with life-limiting conditions and more young adults are surviving into adulthood.
And families from BAME communities, or those living in deprived areas, are more likely to have children with life-limiting conditions in the first place.
This has a major impact on family health and wellbeing. Families can feel isolated and exhausted caring 24/7 and don’t know where to turn, with rates of family breakdown higher in families caring for seriously ill children. Shockingly, mothers of seriously ill children are 50% more likely to die prematurely themselves.
“There is no back up if a nurse phones in sick for us in the evening. . . We have had nothing but trouble trying to get the care we need.”Chevonne, Mum of Mikey who has a life-limiting condition
How we will make a difference
We will help to address this crisis of access:
- We will provide information and support for children, young people and families to help them access care.
- We will support local commissioning and hold local areas to account for providing 24/7 support in line with national standards.
- We will stimulate and support new models of working to address care gaps and ensure more consistency.
- We will encourage and facilitate collaboration between services to join up care and make the best use of resources.
- We will provide data and information to support families, services and commissioners.
Our 10 year access goals
Over the next 10 years we have set the following goals to increase access to children’s palliative care services:
- More families will know about, understand and are able to access care and support.
- All areas are able to offer 24/7 support at the end of life.
- All UK nations have a clear strategy and plan for children’s palliative care.
- There are integrated approaches to delivering care in all areas.