Together for Short Lives is the authoritative voice for children’s palliative care. We use this voice to influence policy across the UK, speaking up for children with life-threatening and life-limiting conditions, their families and services which do so much to support them.
Our influencing work aims to ensure that:
- every child has 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 - has access to palliative care services, including children’s hospices, which are sustainable and fairly funded.
- every child - and their family - gets a short break if they need one
- services are more integrated around the needs of children and their families
- every young person has a smooth transition from children’s to adult’s palliative care services - and can access age-appropriate services
- services which provide palliative care to children - including children’s hospices - are regulated fairly and proportionately
- there are sufficient numbers of skilled, competent professionals who are able to care for children with complex and life-limiting conditions
- support to families of children who die with life-threatening or life-limiting conditions is improved
- families receive help from the state to help mitigate the financial impact of caring for a child.
Members of Together for Short Lives are kept up to date by our regular newsletter Policy Matters. We produce regular policy briefings and respond to consultations run by the UK and devolved governments and other public bodies. We also submit evidence to parliamentary inquiries. Some of our policy documents such as meeting notes and presentations are available to Together for Short Lives members in the members' area of this website.
We are currently focused on influencing the following policy areas below. You can read about our work to bring about smoother transitions for young people and age-appropriate services on the Transition Taskforce webhub. Find out what we would like the next UK government to do following the 2015 general election in our eight policy priorities for the next Parliament.
The Children and Young People Health Outcomes Forum
This is an independent forum set up by the UK government to advise on how health outcomes could be improved for children and young people in England.
Funding children’s palliative care
Together for Short Lives wants to see a fair and transparent funding system which delivers for children and families and secures sustainable and consistent funding for those providing palliative care, including children’s hospices.
Commissioning children’s palliative care in England
In England, NHS clinical commissioning groups (CCGs) and local authorities should work together to commission palliative care for children with life-threatening and life-limiting conditions.
Special Educational Needs and Disability (SEND)
Assessments, planning and services for children with SEN and disability in England are changing.
Influencing policy in Northern Ireland, Scotland and Wales
The majority of public policy relating to children who need palliative care in Northern Ireland, Scotland and Wales is devolved.