1. Paediatric Palliative Care and Policy Development Dr Chantal Wood Chair EAPC Paediatric Taskforce National Health Ministry PPC Taskforce Head of the Paediatric Pain and Palliative Centre, APHP, Paris Member of Fundraising Scientific Committees Paediatric Palliative Care Funder’s Meeting 1st December 2012, Rome, Italy

2. Study by the European Parliament’s Committee on the Environment, Public Health and Food Safety (May 2008) By J.M.Martin-Moreno, M. Harris, L. Gorgoyo, D. Clark, C. Normand, C. Centeno 27 Countries Adult PC Services = 2-20/million inhabitants Paediatric Palliative Care Services* 11 Countries None 9 Countries 1-2 4 Countries 3-10 3 Countries >10 (Germany, Romania, UK) * (Services varied: Hospice, Respite Centre, Day Centre, Ambulatory, In-Patient, Home- Based Team, Hospital-Support Team, etc.)

3. PPC Medical Training in France Undergraduate mandatory University program for Pain and Palliative Care, for all medical students French University Diplomas on Palliative Care –3 to 6 hours on paediatric pain and palliative care during the training Specific Paediatric Palliative Care training during certain University Diplomas (DU) –A 3 day training course started 10 years ago, common to all the National University Diplomas …. Medical Speciality of « Pain and Palliative Care » (DESC) (created 4 years ago) –With courses on paediatric palliative care…. But theses courses are optional –Training courses in certain units….. –Financial difficulties to pay the residents National University Training Program for Paediatric Pain and Palliative Care (2010…) –Opened to physicians, nurses, psychologists, physiotherapists, social workers, dentists…. –Supported by scientific societies : SFP, SFAP, SFETD –2 year program : 160h + personal research paper with optional beside training Development of specific training in neonatal palliative care

4. Development in France Law on the right to Palliative Care (2002, 2005), but not paediatric specific Health Ministry Pluriprofessional Taskforce (paediatricians, neurologists, PPC professionals, nurses, rehab physicians…. –How to promote PPC all over France, in Paediatric Hospitals but also in Regional Hospitals and in the Community ? –How to spend the 4 M euros of the Sarkozy Health Plan –Is Respite Care necessary and how to develop it ? National Referential for the Resource PPC Teams –Multidisciplinary and pluri-professional –Working with a hospital or a network, 24/7 –In the region, and/or with other regions close by –In the hospital but also in town, and in centres for cognitively impaired children Development of PPC Networks Only one « official » respite care hospice and many un-official…. Identification of the patients (4/6 groups) can bring national budget

5. Missions Facilitate PPC for the patients (neonates, childen and adolescents) and their families and put the child and family in the centre of all actions taken : –Clinical assessment of the child –Assessment of the family and the social needs –Elaboration a specific program for each child –psychological support of the child and his family –Exchanges between the professionals and collaboration Promote 24/7 expert PPC in each region : which means : –Visit the different hospitals –Promote house care –Create links with community carers –Identify key carers –Create collaboration Act as an expert team for PPC in collaboration with other teams –Pain management –Other symptoms Offer a training program (theoretical and practical) Distribute documents on PPC good practices Promote clinical research in PPC

6. Differences and similarities Identification of the patients ++++ Regional Efforts : –Networking (hospitals, community +++ etc) –Giving each one a role –Using adult networks if necessary National Efforts : –Training : nurses, medical staff, etc –Networking with adult Palliative Care Services Training in PPC at all levels Meeting together (patient, knowing each other, trust, phone calls) –Scientific Societies –National FDAs : access to drugs –Governmental help Laws (France, Italy…GB…) Money : follow up of the promises is fundamental ++++ International Efforts –EAPC…. –EMEA, WHO (drugs) –European Union… –WHO, Human Rights, World Palliative Care Association, ICPCN, Together for Short Lives,Open Society Foundations etc….

7. Similarities whatever the country Ensure that the laws become international : –the right for paediatric palliative care –EAPC, UN, WHO, ICPCN, WPCA….. Ensure drug availability Identification of the needs Development of community services ? –Training –Networking Developing Hospices and PPC Services : –UK : Charity and then NHS… –Eastern Europe –Other countries : Pilot project : to show the needs and importance to policy makers ? Maintaining the projects : sustainability....?

8. Funding Is crucial for all of us, what ever the country… Specific fundraisers are necessary : –Time consuming –Expertise to reach out to the people –Expertise to get back to those who have given money –Does each program need a fundraiser ? St Christopher’s : 2 full time jobs Germany : ½ full time job Robert Debré Hospital : fundraiser job in discussion