Children’s palliative care in the UK Children’s Palliative Care Funders Meeting December 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 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 : New Opportunities Fund £10m Hospice funding secured and every year thereafter £30 million DH Funding Programme 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