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 estimated 99,000 babies, children and young people in the UK with life-limiting and life-threatening conditions and their families.

Children’s palliative care maps

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...

Access to 24/7 children’s palliative care

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. Worryingly, however, our new report has found a postcode lottery across England with some families of seriously...

A more sustainable approach to statutory funding in England

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...

Ensuring a sustainable children’s palliative care workforce

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...

The cost of living crisis for families of seriously ill children

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,...

A COVID recovery plan for children who need palliative care

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...

All-Party Parliamentary Group for Children Who Need Palliative Care

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...

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...

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

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...

Reducing the financial cost to families when a child dies

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 the UK every year, this nightmare becomes a reality. When the worst happens, parents forced to come to...

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. 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...

Scotland

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...