Influencing policy in Northern Ireland, Scotland and Wales


Together for Short Lives works with the children's palliative care sector in Northern Ireland, Scotland and Wales to ensure 24/7 access to care for children with life-limiting conditions; fair and sustainable funding for children's palliative care services; and assessments, plans and services which are joined up around children and families.

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:

SCYPPEx developed A Framework for the Delivery of Palliative Care for Children and Young People in Scotland. This was published in November 2012 by the Scottish Government with CEL 37 (2012), a directive to NHS Boards in Scotland. Implementing the framework would lead to a better, more integrated and responsive experience for children with life-threatening and life-limiting conditions and their families. Therefore, it is a vital step, and we are keen for NHS Boards to prioritise its implementation.

In 2015, the Scottish Government published a new Strategic Framework for Action for Palliative and End of Life Care. In 2016, Together for Short Lives welcomed the announcement that the Scottish Government has committed £30 million funding for Children’s Hospice Association Scotland (CHAS) as part of increased investment in children’s palliative care over the next five years. The funding, which will commence in 2017/18 will provide approximately half of the agreed running costs of running CHAS.

The additional funding announcement followed research that showed a 50% increase in the number of babies, children and young people who could benefit from palliative care in the past ten years. This funding will enable CHAS to further develop their outstanding services and to reach more of the children and families identified through the research that could benefit from their care and support.

We hope that the governments in Westminster, Stormont and Cardiff Bay will take heed of this investment and re-examine their own funding arrangements for children’s hospices, which fall far short of the level of investment now provided by the Scottish Government.

Wales

Together for Short Lives works in close partnership with our members and children's palliative care networks in Wales to influence policy. The Welsh Government published Together for Health: Delivering End of Life Care strategy in April 2013. Following this, Welsh Ministers committed to reconstitute the palliative care implementation board in Wales so that children’s needs are directly represented. It also committed to extending the 24-hour seven-day a week telephone advice rota currently in place to provide specialist advice for professionals on palliative care services. 

We are calling for:

  • Parity for children who need palliative care: Put children’s palliative care on an equal footing with the adult specialty, strengthening representation of children’s needs on the End of Life Board by establishing the authority of the Paediatric Palliative Care Implementation 1 Group through effective resourcing and a mandate by the Cabinet Secretary for Health and Sport.
  • A plan for children’s palliative care: Develop a Paediatric Palliative Care Implementation Plan based on the recommendations from ‘The Sugar Report’.
  • Giving young people dignity and respect - bridging the cliff edge in care between children’s and adult services: Support joint working between children’s and adult services so that both are actively involved in developing plans for children transitioning into adult services and plans for end of life care in the home.
  • Better communication: Promote collaboration and improved communication within the children’s palliative care sector.
  • Measuring impact: Measure the extent to which outcomes improve for children and young people with life-limiting and life-threatening conditions as well as those for older adults. We would like the Welsh Government to form a taskforce with professionals from the children’s palliative care sector, which will identify a meaningful set of outcome measures, including the proportion of children with life-limiting conditions that use the all-Wales Paediatric Advance Care Plan. We would like Welsh ministers to collect and publish data for specific age groups.
  • Invest in short lives: Make sure that NHS boards and local authorities fund children’s palliative care fairly and sustainably. 

Northern Ireland

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 for Children’s Palliative and end-of-life care 2016-26’. This includes provide parity of funding between children’s and adults’ palliative care. This would equate to providing an additional £800,000 per year to Northern Ireland Children’s Hospice.

The recommendations have been produced by a project group of healthcare professionals, officials and representatives of the Northern Ireland Children’s Hospice. 

A proposed service framework for children and young people in Northern Ireland also includes standards on children’s palliative care. It states that children should be able to:

  • live at home
  • take part in family, community and school activities
  • access short breaks
  • experience smooth transitions to adult services.

In Northern Ireland, we are calling for action to:

  • Prevent family breakdown: Services need to be better organised around families and not institutions so it is easier for them to navigate the system and access the care and support they need. The Executive should commit to funding short breaks to provide respite care for 1 2 families - giving them time to recharge their batteries. This would reduce the likelihood of family breakdown. Families should be able to access planned and emergency short breaks both inside and outside of their home. 
  • Nursing care today and tomorrow: Make sure that there is a sustainable children’s palliative care workforce in Northern Ireland. Children’s palliative care requires a well-trained, highly skilled workforce and children and young people should have access to specialised care. However, Northern Ireland is yet to fund and appoint a dedicated children’s palliative care consultant - a role which is a critical part of the multidisciplinary team needed to care for seriously ill children.
  • Support managed clinical networks (MCNs): The National Institute for Health and Care Excellence (NICE) recommends that services should be based on managed clinical networks that should collaborate in planning and providing care. MCNs should build a strategic and joined up approach to children’s palliative care across health and social care, across the statutory and charitable sectors and in different care settings. There is currently no children’s palliative care network in Northern Ireland. 
  • Lift the baby benefit bar: Allowing families with children under three with life limiting and life-threatening conditions to access the mobility component of the disability living allowance so they can purchase a specially adapted vehicle to carry life-supporting equipment. Currently the benefit is only available to children aged three and above.
  • Give young people dignity and respect - bridging the cliff edge in care between children’s and adult services: Making sure that all children and young people with long-term conditions have access to timely, high quality transition planning to adult services. 
  • Care and compassion: Allocate funds to make sure that bereaved parents have a right to a period of statutory paid leave following the death of their child.