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.
Choice in palliative care for children and young people
Together for Short Lives is calling for children and young people with life-limiting and life-threatening conditions to be able to choose how and where they receive palliative care.
Consultation on Children's Hospice Grant
NHS England and Together for Short Lives have consulted children's hospices in England on how the NHS England Children's Hospice Grant should be allocated from April 2017 onwards.
Giving families a break
Where families are caring for a child with a life-limiting condition and providing around the clock care, relationships often suffer. 36% of families break down. Families need help now, so they can make the most of their time together.
Disability Living Allowance: mobility component
Together for Short Lives would like the government to reform the eligibility criteria of Disability Living Allowance so that it supports children under three years old who must always be accompanied by bulky medical equipment and/or need to be near a motor vehicle in case they require treatment for their condition. This would bring the mobility component eligibility criteria in line with the criteria for Blue Badges for parking and would therefore support 2,223 children and their families to live as fulfilling lives as possible.
Bridging the cliff edge in care between children's and adult services
Becoming a young adult should be an exciting time, full of new experiences and a time to look forward to a new adventure. But for young people with life-limiting conditions, making the transition from children’s to adult services is like falling off a cliff edge.
Bereaved parents deserve time to grieve - let's help them get it
Coming to term with a child’s death is unbearable, but many families don’t get any paid bereavement leave from work and face financial hardship.
Special Educational Needs and Disability (SEND)
Assessments, planning and services for children with SEN and disability in England are changing.
SEND children's palliative care implementation resources
Together for Short Lives has produced a number of free resources to help local areas to implement the SEND reforms for children and young people with life-limiting and life-threatening conditions.
SEND: case studies to help with implementing the reforms
We have sought to collect and share best practice in implementing the new special educational needs and disability (SEND) system for children and young people with life-limiting conditions. You can download a selection here:
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.