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.
Many parent-carers are forced to juggle work responsibilities and care for other children as well as providing round the clock support for their seriously ill child. Some only just manage, and need an active government to step in to help them stay resilient, to make sure they do not break down or reach crisis point.
All-Party Parliamentary Group for Children Who Need Palliative Care
Together for Short Lives is the Secretariat for the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, which seeks to educate, inform and motivate Parliamentarians to take action to help transform the lives of children and young people across the UK with life-limiting and life-threatening conditions.
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.
Understanding the growing number of children who need palliative care
How can you effectively plan and fund services for children and young people with life-limiting conditions if no one knows where they are? This ignorance must be challenged.
Making sure that there are enough children's palliative care nurses
The number of children with life-limiting conditions that need care and support is increasing, but the number of nursing posts to provide that support is failing to keep apace. We have to change this so every child can have the expert care they need.
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.
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.
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.
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.
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.