National strategy
A national action strategy for cerebral palsy cannot wait
A slow but necessary progression
The Fondation Paralysie Cérébrale is the only research fully dedicated foundation to have invested in research for 10 years in order to speak up for people living with cerebral palsy and for professionals committed daily to advance research.
The white book based on reflections is today a plea for the implementation of a national action strategy for cerebral palsy.
Major National Survey “ESPaCe”
Signature of the “Charte de la rééducation/réadaptation” (Charter for re-education/rehabilitation)
Unveiling of the “Cerebral Palsy White Book”
HAS re-education recommendations
Publishing of the “Manifeste du Livre blanc de la paralysie cérébrale” and development of thematic proposal sheets
2016 – 2017
Major National Survey “ESPaCe”
The Fondation, in partnership with family associations, learned societies, field professionals, launched this survey ESPaCe (National survey on care received, perceived needs, satisfaction level and expected improvement priorities as far as motor re-education is concerned by people affected with cerebral palsy and their families) in order to support a reflection on best practices in the field of current motor re-education.
This national survey collected 1 010 answers to the questionnaire (354 children, 145 teenagers, 511 adults).
Key elements emerging from this survey are:
- High need for information and improvement of communication with health professionals;
- High priority given to access to physiotherapists trained for the care of persons affected with cerebral palsy;
- Lack of coordination and psychological support for caregivers despite high levels of stress;
- Insufficient organisation & support during the transition from childhood to adulthood.
Authors come to the conclusion that health policies should:
- Concentrate on accessibility to re-education/rehabilitation at any age;
- Consider that the transition to adulthood occurs over a long period of time, from age 12 to 25
- Develop motor re-education programmes specific to teenagers;
- Maintain a multidisciplinary re educative approach in adults.
October 6, 2021
Unveiling of the “Cerebral Palsy White Book”
In 2020 and 2021, a reflection by persons affected, families and professionals was set up under the leadership of Pr Marc Tardieu. Approximately 60 people (Parents of children affected with cerebral palsy, adults with cerebral palsy, professionals belonging to health, paramedical and paramedical sectors) shared thoughts on each of the four axes of the national health strategy 2018-2022.
- Set up a policy promoting health including prevention in all spheres of society;
- Fight against social and territorial inequalities regarding access to health;
- Guarantee quality, safety and relevance of care at each step of the health journey.
- Innovate to change our health system by reasserting the users’ place.
A general synthesis addressing one by one the subjects chosen as the most important and transversal was then written. An independent reading committee helped with the final format. Structured in 5 parts, this synthesis states the findings following by proposed solutions to develop the national strategy on the following topics:
- Trust hubs and areas of expertise!
- Who decides on quality and care?
- From school to work: adapt singularity rather than reject complexity.
- Social and territorial inequalities strengthen handicap injustice.
- Scientific innovations, evaluated practices, progress for all.
This general synthesis, comments by actors of the handicap field on national and international levels, reports adopted by workshop participants and various annexes, constitute this Cerebral palsy white book.
This white book is the opportunity to start acting and draw the lines of a truly inclusive society.
Relive the round table with Ms Sophie Cluzel
On 8 November 2021, a round table called “Cerebral palsy White Book, and what’s next?” took place in the presence of Ms Sophie Cluzel, who was then State Secretary in charge of disabled people.
It gave the opportunity to exchange on the pillars of the White Book. A young man with cerebral palsy, one parent, one medical professional and one paramedical professional interviewed the minister.
Discussions focussed on participation to a social life, training of professionals, importance of research and creation of areas of trust and expertise.
Thematic sheets taken from the White Book
They are concrete proposals written in a collective effort. The writing and proofreading were always carried out by several contributors and with a double check by professionals and families. They usefully complement the plea of the White Book towards action at a time of the political cycle when it is essential to put proposals on the table.
These documents, made available to all those who contributed to the White Book, will be sent to all those concerned by the organisation of responses to the needs of children and adults with cerebral palsy, politicians and central administrations.