Paediatric Palliative Care in France Dr Chantal Wood Dr Matthias Schell French Paediatric Palliative Taskforce
Paediatric Situation in France In France, due to disease, 2500 to 4000 children die each year Most die in their paediatric units 50 to 80 %... Differences due to the geographical areas Home Hospitalization Care Involvement of certain carers. and community carers. Palliative care was initially developped for cancer patients and AIDS 4 networks (Paris, Toulouse, Lyon, Rennes) Some sub-acute and chronic hospitalization centres (various illnesses) No identified palliative care services for cognitively impaired patients
Medical training 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 Special sessions for Paediatric Palliative Care during certain University Diplomas (DU) A specific 3 day training course started 6 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
Policy Helpers Presidential (Sarkozy) Health Ministry Plan aimed to promote Palliative Care in France Adult palliative care : Specific budget Media declarations on the importance of Palliative Care. Paediatric palliative care : Budget available for 4 years : 4 M euros 70 000 to 275 000 Euros per region Development of regional teams and networks
PPC Taskforce worked for 2 years Pluriprofessional taskforce (Dr Regis Aubry) Members : paediatricians, neurologists, PPC professionals, nurses, rehab physicians. What is the best strategy to promote PPC all over France? How to bring in PPC culture in children s hospitals? How to spend the 4 M euros? Is Respite Care necessary?
National Referential for the Resource PPC Teams Definition of the role as a Resource PPC Team Multidisciplinary and pluri-professional Working with a hospital or a network In the region, and/or with other regions close by In the hospital but also in town, and in centres for cognitively impaired children Their role: Expertise in PPC Advice and support for the carers of the different hospitals and wards Promote paediatric palliative care in these hospitals Promote paediatric palliative care at home and in the community
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
Collaboration With other paediatric units with a PPC activity With adult palliative care teams : Promoting help for pain and symptom management Promoting education programs With other healthcare institutions Rehabilitation centres Centres for special needs children.
Respite care One project partially financed by the Health Care system : Oasis, Toulouse Other projects are to be developped : Lyon, Margency Project of a working group, in the Paris area, to identify the needs of specific PPC beds
Other new developments Website in french from the frenchspeaking network of paediatric palliative care Scientific societies : paediatric, and palliative care Commission inside the french paediatric society to develop pain management and PPC 2 sessions on PPC during the National Paediatric Congress Sessions during the National Palliative Care Congress on PPC
The help of the French Health Ministry has been crucial for us all BUT will it continue..? There is a need for financial support from grants and foundations BUT the french are not used to giving money for health problems. There has been progress but there is still a lot to de done!!!