We are here to listen and speak up for those whose voices are not heard or are simply ignored. We want to amplify the concerns of children and young people with life-limiting and life-threatening conditions and their families; and those who support them, so that policy makers deliver better and more engaged services informed by their needs.
We work to influence politicians and policy makers across the UK to make sure that:
- The number and needs of children and young people with life-limiting conditions and life-threatening conditions are more accurately monitored.
- There are enough professionals who are trained with the skills and competencies to care for children with life-limiting and life-threatening conditions.
- Children's palliative care services are funded fairly and sustainably by the state.
- Families caring for under three year olds with life-limiting conditions can access the mobility component of the disability living allowance (DLA) and have the financial support they need to transport their babies home from hospital.
- Young people with life-limiting and life-threatening conditions have dignity and respect - and are able to access palliative care services which are appropriate to their age and development.
- Bereaved parents have time to grieve without the fear of financial hardship.
Click on the links below to read more about our policy priorities and the work which we are doing to make sure that they are realised.
Please also read our blogs for our opinions and analysis about the policy landscape affecting children with life-limiting conditions, their families and the services which care for them.