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-shortening conditions and their families; and those who support them, so that policy makers deliver better and more engaged services informed by their needs.
Our 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-shortening conditions
- support to families of children who die with life-shortening conditions is improved
- families receive help from the state to help mitigate the financial impact of caring for a child.
To find our more read out regular policy insight blog.
Better funding for children's palliative care
Our survey of statutory funding for children's palliative care in 2015/16 has found that children’s palliative care charities are on the brink of state funding crisis.
Care around the clock
24/7 children's palliative care can improve outcomes for children and families and help reduce unplanned, unnecessary and expensive emergency hospital admissions.
Commissioning map of children's palliative care
Together for Short Lives has published maps which show, for the first time, how well palliative care for children and young people with life-shortening conditions is being planned and funded by the NHS and local authorities in England.
Consultation on Children's Hospice Grant
NHS England and Together for Short Lives are consulting children's hospices in England on how the NHS England Children's Hospice Grant should be allocated from April 2017 onwards.
As the voice for children's palliative care Together for Short Lives influences policy across the UK, speaking up for children with life-threatening and life-limiting conditions, their families and the services that support them. Here, we detail some of the recent consultations you've helped us respond to and current consultations.
Disability Living Allowance: mobility component
Together for Short Lives would like the government to reform the eligibility criteria of Disability Living Allowance to support children under three years old with life-shortening conditions and their families to receive support for essential transport modifications.
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.