Children’s palliative care in the UK

Children’s Palliative Care Funders MeetingDecember 2012

Barbara Gelb Chief Executive Together for Short Lives

Some key milestones in UK children’s palliative care

•1970s -Paediatricans recognise the need for focus on children’s palliative care •Helen House - world’s first children’s hospice - opened in 1982•Mid 1980s - First medical CPC Consultant •Late 1980s – ACT established to promote the development of children's palliative care •1980s and 1990s – growth of children’s hospice movement •1998 – establishment of Association of Children’s Hospices ( later Children’s Hospices UK)•2007 – Independent Review of Palliative Care in England•2008 - Aiming High for Disabled children •2008 – Better Care Better Lives –England •2010 – Together for Short Lives following merger of ACT and Children's Hospices UK

Funding – key milestones UK Government

• 1990s - DH ‘Pilot Programme for CPC’ funding in 90s - Diana community children’s nursing teams

[ 1997 – devolution and creation of 4 nation UK]

England Government : • 2002 -New Opportunities Fund • 2006 -£10m Hospice funding secured and every year thereafter • 2010 -£30 million DH Funding Programme• 2012 -Ongoing work to develop a Tariff for CPC

Charitable – UK wide • Hospice sector – significant proportion charitable funding• True Colours Trust a key funder

Where are we now ?

Specialist PCT

Hospice

CCN

Local paediatric services

GP

Social Services

Education

Community palliative

care

CORE

Specialist

Universal

Opportunities for children’s palliative care across all 4 UK Nations

• Profile of children’s palliative care never been higher at policy level across all 4 nations

• Advocacy: Together for Short Lives – one voice for children’s palliative care . Also Association of Paediatric Palliative Medicine

• Research: first UK Chair – the True Colours Chair in Children and Young People’s Palliative Care

Critical policy opportunities across all 4

Nations Significant policy initiatives in each of the 4 UK nations :

-Wales – All Wales Children’s Palliative Care Standards (2008). Together for Health – Delivering End of Life Care, a new delivery plan for the NHS and its partners to improve the end of life care in Wales

-Scotland – framework for children’s palliative care

-Northern Ireland –Review of children’s palliative care services within overall review of children and young peoples services

-England: Palliative Care Funding Review – tariff based system

Key challenges / areas for development in children’s palliative care across all 4 UK Nations• Awareness and understanding – political, public and professional:

language of cpc

• Equity of access (49,000 children with life limiting/life threatening conditions but children’s palliative care not reaching all of these)

• Integration and care co-ordination potential of cpc networks

• Transition from children’s to adult services

• Sustainability of services

• Workforce development and recruitment

• Community engagement

• Availability of 24/7 community nursing services

And so we continue our journey to strengthen children’s palliative care in the UK ..

Thank you for listening