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.
Most families caring for a child with a life-limiting condition have felt even more isolated and alone than normal during the Coronavirus pandemic, with some parents describing that they feel like a “forgotten group”. The lockdowns have had a devastating impact: too many seriously ill...
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...
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...
A growing shortage of skilled children’s palliative care doctors and nurses across England is at a crisis point. Together for Short Lives' October 2019 workforce report has revealed that the crisis is leading to terminally ill children and their families missing out on crucial specialist...
Organisations and professionals that provide children’s palliative care within the UK are regulated. This ensures that children receive safe, high quality care from professionals with the right skills and expertise to care for them. Together for Short Lives works with regulators across the UK to...
Fundraising regulation is important for children’s palliative care charities. All fundraising by, or on behalf of, charitable organisations in England, Northern Ireland and Wales is regulated by the Fundraising Regulator. Charities in Scotland are regulated by the Scottish Fundraising Standards Panel, which works closely with...
Whether or not families can choose how or where their child receives palliative care depends on their condition and what is in their best interests. However, too often, families’ ability to choose depends on whether their local community children's palliative care services are planned, funded...
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. We are also unclear as to...
Managed clinical networks (MCNs) have the potential to bring children's palliative care professionals and services together in regions across the UK, joining up care and support for children and families. We call on the UK's governments to invest in MCNs to make sure every one...
Palliative care for children with life-limiting and life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, death and beyond. This includes bereavement support for the whole family, including siblings. We are concerned that...
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...
Families of children with life-limiting conditions face an unfair financial burden when their child dies. As part of the Fair Funerals campaign, Together for Short Lives is asking the government to increase the amount of money available for funeral expenses through the funeral payment in...
Children and families face an unacceptable postcode lottery of support as a result of the way in which children's palliative care is planned and funded by CCGs and local authorities. We call on the UK government to hold CCGs and local authorities to account for...
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...
There are 1,000 children in Wales with life-limiting or life-threatening conditions. Much progress has been made implementing the Welsh Government’s End of Life Care Delivery Plan for children, young people and their families. However, the way in which children's hospices in Wales are funded by...
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. We join Children's Hospices Across Scotland (CHAS) in calling on the...
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...
