Some key milestones in UK children’s palliative care

1. Children’s palliative care in the UK Children’s Palliative Care Funders MeetingDecember 2012Barbara Gelb Chief Executive Together for Short Lives

2. 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

3. 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

4. Where are we now ? Specialist Hospice Specialist PCT Community palliative care Local paediatric services CORE CCN Social Services Education GP Universal

5. 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

6. 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

7. 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

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

9. Thank you for listening