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.
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...
Children’s hospices across England provide vital care and support to children and young people and their costs are rising rapidly. NHS England (NHSE) plans to continue £25 million of grant funding for children’s hospices in 2024/25. We welcome this, although we await news of how...
Our new interactive maps show where seriously ill children and their families in England can access palliative care which meets National Institute for Health and Care Excellence (NICE) quality standards. We have created them from information provided by children's palliative care networks and the results...
The UK Government and NHS England have published a number of clear policies which provide an imperative for providing palliative care to seriously ill children and their families. However, our research has found a postcode lottery across England with some families of seriously ill children...
The APPG for Children Who Need Palliative Care and Together for Short Lives issued freedom of information requests to NHS clinical commissioning groups (CCGs) in England in February 2021. These requests aimed to understand the extent to which key elements of children’s palliative care are...
Families of children with life-limiting conditions rely on the palliative care provided by the voluntary sector, including children's hospices. Despite their amazing work - and the pressure they take off the NHS - these lifeline services do not receive enough money from the state. The...
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...
There are 1,300 children in Northern Ireland with life-limiting or life-threatening conditions. Together for Short Lives is working in partnership with the sector in Northern Ireland to secure funding to implement the Department of Health’s ‘Providing High Quality Palliative Care for Our Children: A Strategy...
Much progress has been made implementing the Welsh Government’s End of Life Care Delivery Plan for children, young people and their families, including the Welsh Government’s proposed £888,000 per year increase in funding for Wales’ children’s hospices, Tŷ Hafan and Tŷ Gobaith. However, the extent...
We welcome the progress that planners, funders and providers have made in making sure that children, young people and their families in Scotland can access the palliative care they need, where they need it. This includes the Scottish Government's commitment develop and publish a new...
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...
