Together for Short Lives
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Policy and influencing

Find out about our policies and the changes we believe are needed to build a strong and sustainable children’s palliative care sector and transform the lives of the estimated 99,000 babies, children and young people in the UK with life-limiting and life-threatening conditions and their families.

Five ‘must-dos’ for the next UK Government

Ahead of the upcoming UK general election, we call upon all political parties and candidates to commit to policies aimed at making sure children and young people with life-limiting and life-threatening conditions can make the most of every moment that they have left together. High...

A manifesto for palliative and end of life care

We have developed a joint manifesto for palliative and end of life care in partnership with Hospice UK, Marie Curie, the National Bereavement Alliance and Sue Ryder. Ahead of the next UK general election, we call upon all political parties and candidates to commit to...

An overview of children’s palliative care in the UK in 2024

Our new report, Short Lives Can't Wait shows that thousands of families whose children need the support of children's palliative care face a postcode lottery as to whether they receive the right care. This is unacceptable. Our research has found that: Whether the right care...

Children’s hospice funding across the UK in 2024

Whether it be through short breaks for respite, help with accessing the right services or support through the loss of a child and beyond, children's hospices across the UK are a crucial source of support for seriously ill children and their families. Despite their importance,...

Children’s palliative care maps

Our interactive maps show where seriously ill children and their families across the UK can access 24/7 end of life care at home which meets National Institute for Health and Care Excellence (NICE) quality standards. We have created them from information provided by children's palliative...

Ensuring a sustainable children’s palliative care workforce

There are too few professionals with the skills and experience needed to provide children’s palliative care in hospitals, children’s hospices and in the community. Together for Short Lives has found that: There are too few community children’s nurses (CCNs) employed by the NHS: CCNs provide...

The cost of living crisis for families of seriously ill children

We have joined with other charities including Contact and Sense in calling on the UK Government to help families with disabled children with their extra energy costs and soaring household bills as a result of the cost of living crisis. Even before recent price rises,...

All-Party Parliamentary Group for Children Who Need Palliative Care

Download the APPG's inquiry report, published on 21 October 2018, here. Together for Short Lives is the Secretariat for the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care within the UK Parliament. The APPG is a cross-party group of MPs and peers which...

Affordable and accessible childcare

Access to high-quality, affordable and accessible childcare is important for the educational and social development of seriously ill and disabled children. Through effective childcare, disabled children with complex needs will see progress in both their physical and mental well-being. However, there is general recognition that...

Preventing family breakdown through short breaks for respite

Children with life-limiting conditions – and their families – rely on frequent short breaks for respite. The pressure on parents of having a child with a life-limiting condition is immense, so social care is vitally important to relieve this stress, spend time as a family...

Giving bereaved parents paid time away from work if their child dies

Together for Short Lives welcomes the Parental Bereavement (Leave and Pay) Act 2018 and believes that it will introduce an important period of paid leave for parents to help them come to terms with the unbearable experience of losing a child. We thank Kevin Hollinrake...

Reducing the financial cost to families when a child dies

The prospect of losing a child is a parent’s worst nightmare. Tragically, for the parents and carers of 5,000 babies, children and young people who die in England and Wales every year, this nightmare becomes a reality. When the worst happens, parents forced to come...