Children with life-shortening conditions:
Priorities for Parliament
There are 49,000 children and young people in the UK living with a life-shortening condition, which means they may need palliative care. There are some wonderful and committed professionals who provide it across the UK working in some inspirational places – in the family home, in hospitals, community settings and in the UK’s 53 children’s hospices.
Yet, despite these families being some of the most in need in the UK, many are still not getting the help and support they require. While services offer a day to day lifeline to families, many of the challenges they face can only be addressed by changes to policy, nationally and locally.
That is why Together for Short Lives has produced these eight priorities for Parliament, to transform the way services are developed and commissioned. We believe this provides politicians of all persuasions with a blueprint to help make sure that children and families can make the very most of the time they have together.
We presented our eight priorities for Parliament to MPs at a Westminster reception event on 19 November 2013.
We urge the government to implement our priorities during the course of the new Parliament.
- Every child should have access to children’s palliative care in the setting of their or their family’s choice and whenever they need it - 24 hours a day, seven days a week
- Every child - and their family - should have access to palliative care services, including children’s hospices, which are sustainable and fairly funded.
- Every child - and their family - should get a short break if they need one
- Services should be more integrated around the needs of children and their families
- Every young person should have a smooth transition from children’s to adult’s palliative care services
- Services which provide palliative care to children - including children’s hospices - should be regulated fairly and proportionately
- Support to families of children who die with life-shortening conditions should be improved
- Families should receive help from the state to help mitigate the financial impact of caring for a child