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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
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Children’s palliative care in the UK Children’s Palliative Care Funders MeetingDecember 2012Barbara 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 Hospice Specialist PCT Community palliative care Local paediatric services CORE CCN Social Services Education GP 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 ..