Policy and influencing

Now the general election is done, we call upon the new UK Government 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 quality children’s...

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. Now the general election is over, we call upon the new UK Government to commit to policies aimed...

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...

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,...

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...

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...

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,...

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...

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...

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...

Single, joined-up education, health and care (EHC) assessments, plans and personal budgets for children and young people up to the age of 25 are only available to children and young people in England who have a special educational need (SEN). Together for Short Lives has...

Together for Short Lives would like all 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 to have access to a specialist vehicle or...

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...

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...

For young people with life-limiting conditions, making the transition from children’s to adult services is like falling off a cliff edge. The transition these young people have to undergo from the comprehensive care offered by children’s palliative care to unfamiliar adults’ services can be daunting...

We have compiled a list of all of the public policies published by the UK Government, devolved governments and other statutory bodies that have an impact on children with life-limiting conditions, their families and the services and professionals who care for them. We have written...