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.
Together for Short Lives is one of six national charities pressing ministers to #followthechild and make sure that the choices seriously ill children and families can make about their palliative and end of their life care are based on their needs, wishes and best interests - and are not restricted by the postcode in which they live.
Commissioning in England 2017
Our ‘Commissioning children’s palliative care in England: 2017 edition’ report sets out what clinical commissioning groups (CCGs) and local authorities are claiming they do to plan, fund and monitor (a process known as ‘commissioning’) care for the 40,000 children with life-limiting and life-threatening conditions in England.
The Health & Wellbeing Alliance
The Health and Wellbeing Alliance is a Voluntary Community and Social Enterprise (VCSE) made up of 21 organisations that represent communities who share protected characteristics or that experience health inequalities. Together for Short Lives is part of the alliance working on Palliative and End of Life care.
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.
Disabled Children's Partnership
Together for Short Lives is a proud member of the Disabled Children's Partnership - a growing coalition of more than 45 organisations - campaigning for improved health and social care for disabled children, young people and their families in England.
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 and life-threatening conditions who rely on children’s hospice services is increasing. Yet the nursing shortfall means that children’s hospices are increasingly being forced to cut back the vital palliative care they can offer to families. 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 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.