14th September 2023 :
World Skin Health Day, organised by the French Society of Dermatology (SFD).
The first part of the day was dedicated to Skin Disability and Marie-Claude Boiteux testified during the round table on this subject.
Pr Marie BEYLOT-BARRY presented with the impact of dermatological disorders on quality of life
It also was the occasion of an interview for the SFD.
If you are a dermatology patient THIS IS VERY IMPORTANT
You are invited to take the GRIDD Survey now and share it with anyone who can take part!
On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.
Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in 17 languages.
The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally.
The GRIDD Study is open until September 28, 2023.
25th November 2022 : The Triathlon of Sireuil presented CLI with a cheque
24th January 2023 : Workgroup on recognising the value of the work done by volunteers
02nd February 2023 : Working on the French Local Projects for Health
14th February 2023 : Eurordis Black Pearl Awards
9th June 2023 : European Workgroup on Pregnancy and Family Planning
22nd June 2023 : BMS SpotInfoPatients “From Patients’rights to how Patients can commit in the Health system”
26th June 2023 : Eurordis Webinar : Patient Partnership Framework in ERNs
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Twice a month, the French Federation for Skin publishes (in French) an new article on global issue of skin and dermatology.
Go and Have a look from time to time
1st – 2nd June 2023
International Alliance of Dermatology Patient Organisation (IADPO-Globalskin)
held its “Elevate Conference 2023” in Brussels
Such a pleasure to meet again face-to-face …. at last ….
Worlwide Patient Organisations were represented for two days of work and great times together.
Here are some of happy times we had before we publish the report of all our hard work.
The French Federation for Skin (FFP), the French Society of Dermatology (SFD), the National Union of Dermatologists Venereologists (SNDV), the Network for Rare Skin Disorders (FIMARAD), the French Federation for Continuous Training and Evaluation in Dermatology Venereology (FFFCEDV), as well as the association of Future Dermatologists Venereologists in France (FDVF) pulled the communication cord :
Dermatology is on the brink, an alarming situation in France. The WHO (World Health Organisation) has classified skin disorders as the 4th most impacting disorders regarding patients’ quality of life. Yet, anywhere in French, skin disorders encounter an intersectional group of difficulties : No access to care in several regions, several months’ delay to get an appointment in town and in hospital, alarming medical and paramedical demography, therapeutic and diagnostic roving leading to loss of opportunities and refusal of care, social inequities in health, and more.
A recent study led in 316 Prefectures and Sub-prefectures (both local regional political and administrative centres) showed that dermatology is one of the first specialist area of medicine for which getting a first appointment is almost impossible.
Patients and their families feel like they are left behind et health professionals feel helpless when face with growing difficulties. Yet, in the past few years, dermatology treatments have seen a real revolution and should allow, with correct care, to cure many conditions efficiently and much earlier.
Despite these alarming findings, skin disorders are totally absent in today’s main local health priorities. The coming review of the PRS is a unique opportunity to correct this omission and finally take into account the needs of the populations concerned.
Action must be taken urgently !
3 headings and 14 propositions are included in this contribution to turn this crisis around.
-1- Make access to care a Priority
Train more dermatologists venereologists by increasing the number of interns in dermatology.
Re-establish skin healthcare in hospitals in all French regions.
Create the post of Advanced Practice Nurse (IPA) in all hospital dermatology departments.
In areas where skin care is limited, encourage retired private dermatologists to pursue their activities for a few years beyond retirement age.
Develop online dermatology expertise, and prioritise the worst regions where care is very limited or absent.
Create positions for psychologists in hospital dermatology departments.
Re-assess upward the complexity of skin treatments that nurses are allowed to deliver.
-2- Make dermatology care pathways more fluid
Co-develop, together with health professionals and patient organisations, care pathways more readable and clarify the various levels of intervention (1st consultation, specialised care, complex care).
Train « 1st step » health professionals in dermatology and provide them with the minimum equipment necessary (dermatoscope, biopsy equipment, online tools, etc.)
Strengthen the co-ordination between 1st consultation and specialised care based on local measures and systems that were already well-tested (especially online expertise, specialised skincare teams)
Reinforce the link town-hospital, especially supporting and increasing the fees for hospital consultations delivered by private dermatologists.
Lead, with the support of patient organisation, advertising campaigns and awareness raising for patients to encourage them use the health system in a more responsible way :
o reduce the number of missed appointments.
o Limit the number of annual « check-up » appointments for people who are not at risks or with no particular symptom.
-3- Provide greater support to health professionals and patients
Support the deployment of medical assistants to give doctors more medical time for patients.
Set up, together with professional organisations, a support system for health professionals facing working difficulties (preventing chronic work-related stress, work-life balance, etc).
20th & 21st April 2023,
ERN-Skin organised its Scientific Days on the topic: “Patient Education Program (PEP)”. As defined by the OMS-Europe report it « aims to help patients gain or keep the competencies they need in order to better manage their life with a chronic disorder. It is an integral part, and on a permanent basis,, of patient care ». Since 2009, PEP has been legally defined in France. The long French experience in this field could be an example to implement PEP in other European countries.
the main aims of this Action Plan are to implement the key priorities outlined in the 2021 UK Rare Diseases Framework. : to help patients get a final diagnosis faster; to increase awareness among healthcare professionals; to improve the coordination of care; to improve access to specialist care, treatment and drugs. (orphanews 2023.03.30)
IN THE MEDIA
An article was published in the online pages of the French newspaper Le Monde on Saturday March 13th, 2023
This article, is written and signed by the French Federation for Skin together with The French Dermatology Society (SFD), the Union of French Dermatologist (SNDV), the French Network for Rare Skin Disorders (FIMARAD) and the Federation for Continuous Training in Dermatology (FFFCEDV).
They call on the government to take account that dermatology patients and health professionals are greatly worried by the situation of Dermatology in France.