FONDAZIONE MARUZZA LEFEBVRE D OVIDIO ONLUS. Silvia Lefebvre D Ovidio for Developing a national policy for children s palliative care in Italy
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1 FONDAZIONE MARUZZA LEFEBVRE D OVIDIO ONLUS Silvia Lefebvre D Ovidio for Developing a national policy for children s palliative care in Italy Geneva, May 25 th 2015
2 LAW 38/2010 Italian excellence in healthcare policy Improved quality of life Resource optimization
3 THE MARUZZA FOUNDATION The Foundation was established in 1999 in memory of Maruzza with the objective of improving the quality of life of patients with incurable illness through the delivery of effective and sustainable care that respects the individuals life, dignity and worth as a person Why Children? - A vulnerable and often invisible group - Specific care appropriate to their age, pathologies and condition In Italy about children are eligible for paediatric palliative care
4 HEALTH CARE IN ITALY The Italian national health service is a public system funded by the State, which guarantees healthcare to all residents Italy is divided into 20 Regions The Norms of application of national legislation must be voted unanimously in the Conferenza Stato Regioni (a collegiate body of representatives from central and regional governments) Each regional authority maintains its autonomy in the implementation of legislation within its jurisdiction
5 THE ROLE OF CHAMPIONS Limited interest/awareness of palliative care for children Only existing legislation regarded adults hospices The Maruzza Foundation establishes the development and diffusion of PPC as one of its primary goals An established expert actively supports the PPC cause The sensitization and involvement of policy makers to encourage a proactive approach to the approval of PPC legislation
6 VENETO PPC NETWORK MODEL Our model was the Veneto Regional Network 1990: a palliative approach was introduced for children with incurable illness 2003: the Veneto region adopts the official regional policy on PPC 2007: the children s hospice in Padua opens (4 beds) NUMBERS 15 staff members (3 paediatricians, 5 district nurses, 6 residential nurses, 1 psychologist) 25% of family GP paediatricians engaged in the Regional Network 30 children receiving PPC daily
7 THE MILESTONES BEFORE LAW 38/ : a Ministerial Commission on palliative care in children is established to prepare a Technical Document on Paediatric Palliative Care, subsequently approved by the Italian Ministry of Health 2007: the Maruzza Foundation began a collaboration with the Ministry of Health (MOU) for assisting and supporting the development of paediatric palliative care networks in the regions : the governmental body responsible for relations between the central and regional governments adopts the technical document prepared by the Ministerial Commission regarding the institution of a regional network of pediatric palliative care services 2010: legislation (38/2010) recognizing the right for children to access palliative care and pain management specific to their age, unanimously approved by Parliament
8 LAW 38/2010 It recognized the right of all patients with incurable illness to access palliative care and pain management services appropriate to their needs and age HOW? The development of 3 different networks: 1. Adult palliative care 1. Adult pain management 2. Palliative Care and Pain Management for Children Child-specific Palliative Care and Pain Management services are organized in a regional network system which is entirely separate from the adult networks The integration of the 3 networks is foreseen
9 REGIONAL PPC NETWORK NEEDS ASSESEMENT Clinical needs Development Psycological needs Educational needs Organizational needs Communication Ethical needs CHILD AND FAMILY Financial needs Social needs Spiritual needs Respite care
10 REGIONAL PPC NETWORK Regional PPC Reference Center School Personnel Community Psycologist Community Services for Home Care Local Rehabilitation Service Home Care Staff Tertiary Care Reference Hospital Primary Care Reference Hospital Family Paediatrician/General Practitioner Adult PC Services Local Emergency Service CHILD AND FAMILY NEEDS Diseases specialist Care Settings Children s Hospital Home Children s Hospice
11 LAW 38/2010 FORESEES? TOOLS INFORMATION Awareness campaigns for the general public Basic training (Train the Trainer) TRAINING (Core Curricula) Specialised Training (Two year master course) The activation of professional training based on needs National Palliative Care Observatory OUTCOME MONITORING Regional evaluation Annual parliamentary report
12 LAW 38/2010 PPC & PM NETWORK IN EACH REGION Guaranteed access to specialised paediatric palliative care and pain management services for all eligible children At least 1 Regional Reference Centre with a specialised multidisciplinary care team Support 24/7 Specialised in-home and hospice care (children s hospice: 4-8 beds) Integration and coordination of all local services (GPs, hospitals, healthcare and social, emergency services etc.)
13 ITALIAN PPC & PM NETWORK TODAY 13 Regions and 2 autonomous Provinces (Trento & Bolzano) have approved development of the PPC and PM Network 5 Regions (Veneto, Friuli Venezia Giulia, Liguria, Piemonte e Basilicata) and 2 autonomous Provinces (Trento & Bolzano) have activated the PPC and PM Networks 3 Children s Hospices in construction (Liguria, Basilicata and Piemonte) 1 Children s Hospice operational (Veneto) There is still much more to be done
14 VENETO REGIONAL PPC & PM NETWORK TODAY NUMBERS 30 Staff members (5 paediatricians, 2 medical interns, 5 district nurses, 7 residential nurses, 5 nurses specialised in pain management, 2 psychologists, 1 physiotrician, 1 physiotherapist, 1 music therapist, 1 shatzu therapist ) 80%: of family GP paediatricians engaged in the regional network 100 children receiving PPC daily
15 THE GLOBAL SITUATION TODAY Much more attention/awareness of the specific care needs of children Many countries have developed policies, studies and guidelines for PPC delivery No official data regarding national legislation regulating PPC delivery We need to change the culture
16 PAEDIATRIC PALLIATIVE CARE A CHILD S RIGHT
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