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 49,000 babies, children and young people in the UK with life-limiting and life-threatening conditions and their families.

All-Party Parliamentary Group for Children Who Need Palliative Care

Together for Short Lives is the Secretariat for the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, which seeks to educate, inform and motivate Parliamentarians to take action to help transform the lives of children and young people across the UK with life-limiting and life-threatening...

Ensuring a sustainable children’s palliative care workforce

We want to make sure that there are enough professionals in the UK have the skills, knowledge and experience needed to provide palliative care to children with life-limiting conditions. Worryingly, staff vacancy rates in children's palliative care services are too high. We want the UK's...

Making sure that services are regulated fairly and proportionately

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...

Making sure that fundraising is regulated fairly and proportionately

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 the Fundraising Regulator...

Offering choices about how and where children and families can receive care

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 and...

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 and...

Joining up care through managed clinical networks

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. However, only two MCNs are currently operating in the UK (in Wales and in the...

Securing bereavement care for children and their families

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...

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

Together for Short Lives welcomes the Parental Bereavement (Leave and Pay) Bill 2017-19 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 welcome the government’s...

Reducing the financial cost to families when a child dies

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 line...

Commissioning in England 2017

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...

Northern Ireland

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...

Wales

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...

Scotland

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:...