1 ow centres of expertise should interface with social services The French experience : state of the art and current challenges Christel Nourissier EURORDIS EUROPLAN Advisor
2 2 strategic Plans for rare diseases in France and Objective of the 1st Plan: «Ensuring equity in the access to diagnosis, treatment and provision of care» Objectives of the 2 nd Plan: A. Improve patient s and carers health and social care B. develop research, C. develop European and international cooperations ECRD Berlin 9 May 2014
3 Among the major achievements of the 1st Plan 131 National centres of expertise were designated in University hospitals ( ), then 500 centres of competence in regional hospitals organised in disease specific networks linked to the centres of expertise ( ) Missions of the centres of expertise («centres de référence» in French) : Improve diagnosis, organise pluridisciplinary care from birth to end of life Expertise and second opinion Research, epidemiological surveillance and clinical trials Production of National protocols for diagnosis and care, participation in European guidelines if possible Information and training of health and social professionals, patients and their family, Coordination with provision of primary care, medical and social care During the 1st Plan, two pilot networks in the field of social services were launched by centres of expertises in the regions of Pays de la Loire and Languedoc Roussillon, as well as a few other initiatives in other regions, (in particular therapeutic education programmes). ECRD Berlin 9 May 2014
4 Outstanding regional initiatives (1) PRIOR in the region Pays de la Loire Creation of a regional resource centre informing, evaluating, supporting and and helping to identify adapted social services, training health and social professionals, teachers, school assistants, associations Funded by the regional health agency Supported and hosted by the University hospitals of Nantes and Angers, and the centre of reference for neurogenetic diseases (Pr Bonneau) A multidisciplinary on call team: 1 coordinating nurse, 1 genetic counsellor, 1 psychologist, 1 occupational therapist, 1 social worker, 1 medical assistant, 1 coordinating assistant, directed by 1 genetician and supported by 2 neurologists, 1 dermatologist: 6,2 full time staff A help line Organisation of training sessions and workshops Evaluations at home Budget: euros PRIOR does not provide any diagnosis neither care ECRD Berlin 9 May 2014
5 Outstanding regional initiatives (2) How to live with a developmental anomaly in Languedoc Roussillon The VALDR network, «How to live with a developmental anomaly», coordinated by the University hospital of Montpellier and the centre of reference for developmental anomalies of Languedoc Roussillon, (Pr Sarda), member of the FECLAD, national network of 8 centres of expertise Funded by the regional Health Agency Partnership with 16 regional patient groups: Ehler Danlos, Kabuki, 22q11, Fragile X, Rett, Prader Willi, Down syndrome, and Alliance Maladies Rares a children rehabilitation hospital : 111 beds, 54 day care facilities, and with two health professionals networks: Réseaux Grandir et naître Missions: mapping and coordination of medical and paramedical professionals, trainings including social workers, school medical doctors and psychologists, teachers, school assistants, patient and families Support to inclusion of children in mainstream or specialised schools Link with social services, support to families regarding the compensation of disabilities and Social Security ECRD Berlin 9 May 2014
6 Main lesson to be learned from the 1st National Plan The interface with social services is essential when taking care of severely disabling diseases To prevent the burn out of medical teams To facilitate clinical research and clinical trials : easier recruitement, less drop outs, clearer outcomes To prevent the explosion of hospital costs What is the point in taking good care of people in hospitals, if they do not have access to adapted social services, schooling, employment, housing to support them when they come back home? Without support, they soon return to the hospital. Specialised social care is much cheaper than hospital care and people have a better quality of life.
7 Social policies and services in the second Plan : 1. integration of social care in reference networks 1. Creation of about 25 disease specific networks Composition : all stakeholders - centres of expertise, diagnosis and research laboratories, patient associations, social professionals, care networks - Aim : strengthen them, share ressources and tools, and cover all rare diseases and patients with unclear diagnosis in the long term : Missions: to reduce diagnostic delay for all diseases, including the very rare, improve legibility of the health care system for all, develop continuity of medical care, diagnostic and therapeutic innovation, basic, clinical and translational research and social care. call for proposals in 2013, 15 networks already identified. Governance and coordination shall be supported by the Ministry of Health in ECRD Berlin 9 May 2014
8 April 2014: Rare diseases reference networks in France AnDDI-Rare developmental anomalies and malformations CARDIOGEN transmitted heart diseases DEFI SCIENCE (Challenge for Science) brain development diseases and intellectual disabilities FAI2R rare auto-immunes and auto-inflammatory diseases FILFOIE rare liver diseases FILNEMUS neuromuscular diseases FIMARAD rare dermatological diseases FIRENDO rare endocrine diseases G2M rare hereditary diseases of metabolic origin MARIH immuno-hématologic rare diseases MCGRE rare diseases of red cells and of erythropoïesis MUCO cystic fibrosis and CFTR anomalies ORKID rare kidney diseases RESPIFIL rare respiratory diseases SENSGENE rare sensory diseases SLA amyotrophic lateral sclerosis
9 Linking with local authorities in charge of people with disabilities Since 2005, local authorities «Maisons Départementales des Personnes Handicapées» MDPH are in charge of the compensation of disabilities in France: schooling, employment, financial support, social services and coordinated by CNSA* Disease networks and clusters of centres of reference at regional level are encouraged to establish links with them and work together *National Fund for Solidarity and Autonomy of people living with disabilities and ageing
10 How to improve the decisions of the MDPH with an optimal use of medical certificates The MDPH lack human resources: in 2012, 81% of their decisions were based on files, without meeting people with disabilities and families neither visiting them at home. This results in poor decisions, paperwork and delays for families, and appeals. The quality of informations provided in the medical certificate about diagnosis, evolution of the disease, limitations of activities, as well as people s potentials, is therefore essential Several workshops have already brought together CoE, associations, CNSA and MDPH to share experiences on common files. ECRD Berlin 9 May 2014
11 Recommendations of CoE, MDPH, CNSA and associations represented : pluridisciplinary teams in expert centres to fill medical certificates Experts centres to create diseases specific check lists for social workers common staff meetings on complex cases (videoconferences) Training of staff of centres and MDPH Continuous development of fact sheets by Orphanet, available on mobile phones
12 Two new projects : interregional complex case managers To support inclusive and continuous life trajectories : 1. Interregional complex case managing teams of CNSA to be recruited in 2014 for people living with rare disabilities : double sensory impairment, neurodegenerative diseases, severe cerebral palsy. Missions: identify resources, evaluate people, empower families and coordinate medical, paramedical and social care: inclusion at school and/or adapted schools, inclusion at work or in specialised workshops, support to carers, assistants at home, adapted housing, respite care linking with centres of expertise, regional health agencies and local disability authorities (MDPH) 2. Another pilot experience initiated by centres of expertise themselves: a complex case manager supported by Necker hospital and the Groupama foundation, for children with rare diseases at high risk of exclusion from school, (mainstream or adapted) and from existing social services in 3 regions : Aquitaine, Ile de France and Limousin.
13 To conclude Developing common tools, such as the use of OrphaCode and shared fact sheets, a common language and cooperation including meetings, and teleconferences between centres of expertise, patient associations, social services and regional/local authorities in charge of compensation of disabilities is essential, not only to improve the quality of life of the patients, also for the sustainability of the work of the CoE themselves. We must go on sharing all successful experiences in the field at European level.
November 2005 Rare Diseases: understanding this Public Health Priority Joachim Rode EURORDIS Plateforme Maladies Rares 102 rue Didot 75014 Paris France Tel + 33 1 56 53 52 10 Fax + 33 1 56 53 52 15 www.eurordis.org
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