social care

How centres of expertise should interface with social services
The French experience :
state of the art and current challenges
Christel Nourissier
EURORDIS EUROPLAN Advisor
2 strategic Plans for rare diseases in France
2005- 2008 and 2011-2014
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Objective of the 1st Plan:
« Ensuring equity in the access to
diagnosis, treatment and provision of
care »
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Objectives of the 2nd Plan:
A. Improve patient’s and carers’ health
and social care
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B. develop research,
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C. develop European and international
cooperations
ECRD Berlin 9 May 2014
Among the major achievements of the
1st Plan
131 National centres of expertise were designated in University hospitals
(2005-2007), then 500 centres of competence in regional hospitals
organised in disease specific networks linked to the centres of expertise
(2007-2008)
Missions of the centres of expertise (« centres de référence » in French) :
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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
Outstanding regional initiatives (1)
PRIOR in the region Pays de la Loire
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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: 370 000 euros
PRIOR does not provide any diagnosis neither care
ECRD Berlin 9 May 2014
Outstanding regional initiatives (2)
How to live with a developmental anomaly
in Languedoc Roussillon
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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
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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:
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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
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.
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 2014.
ECRD Berlin 9 May 2014
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
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
How to improve the decisions of the MDPH
with an optimal use of medical certificates
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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
Recommendations of CoE, MDPH,
CNSA and associations represented :
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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
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.
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.
Thank you !
ECRD Berlin 9 May 2014