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 49,000 babies, children and young people in the UK with life-limiting and life-threatening conditions and their families.
Time is short for seriously ill children. Many will not be alive when the next general election takes place. It is vital that the new Parliament acts urgently to make sure they can access the palliative care they need. Please write to your MP to...
Download the APPG's inquiry report, published on 21 October 2018, here. Please note that, following Parliament being dissolved on 6 November 2019 ahead of the UK General Election, the APPG does not now exist. The APPG will be reformed following an inaugural meeting and election...
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. Medical advances mean there are now 55,000 young adults aged between 18 and 40 with life-limiting conditions and this figure continues to grow. However,...
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. The National Institute for Health and Care Excellence (NICE) has published a clinical guideline ‘End of life care for infants, children and young people with life-limiting conditions: planning and management’. NICE calculates that if...
Together for Short Lives is an active member of the strategic planning group, the Scottish Children’s and Young People’s Palliative Care Executive (SCYPPEx). SCYPPEx draws together individuals and organisations who can influence how children’s palliative care is planned and provided in Scotland. Its members include:...
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...
