1. Children’s palliative care From independent enquiry to effective sustainable services Alan Craft Liverpool Jan 2009

2. Independent Review of Children’s Palliative Care Services

3. Defining children’s palliative care We used the ACT definition of children’s palliative care “an active and total approach to care, embracing physical, emotional, social and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of distressing symptoms, provision of respite and care through death and bereavement” The care pathway therefore extends from the point of diagnosis to end of life care and may extend over many years Independent Review of Children’s Palliative Care Services

4. Palliative care is a thread running through the lives of most children with disability

5. Many children with disability will have palliative care needs during their lifetime

6. Approach to undertaking the review We consulted widely with stakeholders and commissioned research –A reference group –Consultation letter and events –A series of regional visits and national consultation meetings –Commissioned research DH analysis York Health Economics Consortium Independent Review of Children’s Palliative Care Services

7. Setting the scene Children’s palliative care services are delivered within an overall policy framework set by the Government Independent Review of Children’s Palliative Care Services

8. Findings

9. Numbers and expected trends –How many children and young people have palliative care needs? –Where are they located ? –What are the likely future trends? Services and accessibility –What is the current availability and accessibility of children’s palliative care services? Funding and sustainability –What are the current levels of funding? –How sustainable is this funding? Effective and efficient service provision –Which services deliver the best outcomes and represent value for money? Independent Review of Children’s Palliative Care Services We examined each of the following areas in detail:

10. Findings: Numbers and expected trends Poor information base Strong overlap between the needs of children requiring palliative care and those with disabilities Relatively small numbers – particularly at PCT level – but wide variation Improved local needs assessments are essential Services need to be configured across a number of PCTs and local authorities Children and young people with palliative care needs are living longer and have more complex needs Independent Review of Children’s Palliative Care Services

11. Findings: Services and Accessibility Wide variation and inequity of service provision across England Uncoordinated approach to planning - duplication of services in some areas and lack of provision in other areas Overall shortage of community based services Too many organisational, budgetary and geographical boundaries Good integrated services do exist – but these can be resource intensive We found a committed but frustrated workforce and parents who are willing to take on the main carer role if they are supported Independent Review of Children’s Palliative Care Services

12. Findings: Funding and Sustainability Funding is insufficient, largely ad hoc and short-term PCTs struggled to provide information on services for disability and palliative care Limited evidence of joint planning between health and social care Short-term grant funding has built up innovative services – but not enabled them to attract long-term funding Planning and commissioning needs to be co-ordinated to support the development of services for total populations of 1 million Independent Review of Children’s Palliative Care Services

13. Findings: Effective and efficient service provision Investment in community-based services could pay for itself Community services are better for children and their families as well as better value for money The most sustainable / cost-effective community teams are those capable of delivering support 24 / 7 to total populations of 1 million Key workers are essential Independent Review of Children’s Palliative Care Services

14. Important elements of a good service Independent Review of Children’s Palliative Care Services

15. Recommendations

16. Recommendations: Planning and Commissioning A national strategy Clarity about accountability “Sub-regional” commissioning Regional Paediatric Palliative Care Networks Voluntary sector – key partners, stronger voice Independent Review of Children’s Palliative Care Services Planning and commissioning must be improved at every level

17. Recommendations: Data Collection National data on prevalence and trends Develop a framework for regional and local needs assessments Independent Review of Children’s Palliative Care Services Improvements in data collection and needs assessments are urgently needed

18. Recommendations: Service Provision Access to ACT care pathway Focus on community services – 24 / 7 teams Improved end of life care An effective single multi-agency assessment Transition Universal services Independent Review of Children’s Palliative Care Services Greater consistency of access to services in England is required

19. Recommendations: Resources Increase spend and focus on the most cost effective services Joint working by NHS and Local Authority Children’s Services Develop model contracts and best practice guidelines for dealing with the voluntary sector Training and information sharing for commissioners and the voluntary sector Independent Review of Children’s Palliative Care Services More resources targeted at the right services

20. Recommendations: Levers A national indicator Children and Young People’s Plans and continuing care criteria Standards and benchmarks Protect funding Regulation – Thematic review Independent Review of Children’s Palliative Care Services Improved use of levers, including regulation and audit

21. Recommendations: Greater recognition of children’s palliative care Sub-specialty of paediatrics Included in generic training for GPs and paediatricians Career pathway for nurses Workforce strategy Independent Review of Children’s Palliative Care Services Greater recognition of children’s palliative care as a specialism

22. “We were enormously impressed with the commitment of all those involved in delivering services. It would take a relatively small amount of additional resources and improved planning and commissioning to turn this commitment into excellent services for an extremely vulnerable and deserving group of children and young people” Independent Review of Children’s Palliative Care Services Professor Sir Alan Craft Sue Killen

23. Better Care, Better Lives Every child and young person with a life limiting or life threatening condition, will have equitable access to high quality, family centred, sustainable care and support, with services provided in a setting of choice according to the child and family’s wishes

24. 3 key funding priorities Children’s community nurses providing all- round care packages and 24/7 end of lif support at home Short breaks with money from “Aiming High” Children’s paliative care networks to ensure the right people are working together, sharing best practice and planning services effectively

25. Commisioners They are the key to effective implementation

26. How people die remains in the memory of those who live on Cicely Saunders

27. Any questions? Independent Review of Children’s Palliative Care Services