CD MEDICS MEDICEL Workshop „Patient first at the centre” 8 th September 2011 Malta.
46
CD MEDICS CD MEDICS MEDICEL MEDICEL Workshop Workshop „Patient „Patient first first at the at the centre” centre” 8 th September 2011 Malta
-
date post
19-Dec-2015 -
Category
Documents
-
view
217 -
download
0
Transcript of CD MEDICS MEDICEL Workshop „Patient first at the centre” 8 th September 2011 Malta.
CD MEDICS CD MEDICS MEDICELMEDICELWorkshopWorkshop
„Patient first „Patient first at the centre”at the centre”
8th September 2011
Malta
Europe
Mediterranean area
Algeria
France
Spain
Turkey
SloveniaItalyCroatia
Montenegro
Albania
Greece
Malta
Israel
Cyprus
Egypt
Tunesia
Lybia
Maroc
Syria
Lebanon
Russia
Ukraine
CroatiaSerbia
Helping CoeliacsHelping Coeliacs
Progress in the Development of
National Coeliac Societies
Tunde KoltaiTunde Koltai
Hungarian Coeliac SocietyHungarian Coeliac Society
A O E C SA O E C S
WHO WE ARE?
AOECSAOECS
Umbrella organisation of national European coeliac societies
Founded in Rome (Italy), 198836 members from 32 countries:
Andorra, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Russia, Serbia, Slovenia, Spain, Sweden, Switzerland, UK, Ukraine
AOECSAOECS
Represents coeliac patients of EuropeReviews problems of international
importanceCoordinates international activities and
mattersPartner of scientific projects
AOECSAOECS
Chaired by Board of 5 Directors:
Christian Scerri, Malta, presidentJean-Louis Kieffer, Luxembourg Tunde Koltai, Hungary Susan Phillips, ItalySarah Sleet, United Kingdom
AOECSAOECS
Working Groups
1. Helping Coeliacs & Consumer Affaires
2. Statutes
3. Research
4. Coeliac Youth of
Europe
Coeliac diseaseCoeliac disease• „Social disease” - lifelong condition• Changed the general/professional opinion
– more frequent 1:100– not exclusively a childhood disease – difficult to diagnose
• atypical/silent/latent forms• associated diseases, complications
• Rate of diagnosis: 1 : 5 – 1 : 20 ÷ 50• Special one: no cure, no medication vs. exclusive
therapy=eating GF
Low awareness Low awareness
European survey on knowledge about CDEuropean survey on knowledge about CD(AOECS 2004)
Gastroenterologists + average
(incl. Paediatric gastroenterologists)
Paediatricians average
Family doctors low
Other specialists lowcathegories: good/average/low
Patient first at the centrePatient first at the centre
Diagnosis
Diet
Healthcare/social
supports
Coeliac Patient
Science
Food industry
Family
PatientPatient• Long diagnostic period and way • Lost in the healthcare system and feel alone• The diagnosis is a milestone• „Unexpected”diagnosis, „unknown” illness, „funny”
treatment , „fad” diet• Lifelong condition compliance + lifelong learning• Prevention of further complications • Traditional eating habits have to be changed• Quality of life is different (lower + more difficult)• Gluten-sensitive patient = consumer
Diagnosis
Diet
Family
Coeliac Patient
Science
Food industry
Healthcare/social
supports
DiagnosisDiagnosis• Important moment in patient’s life• Diagnosis: frequent wrong and/or late• ‘Case-finding’, screening of risk-groups, family-
members - improving• Co-operation of specialists: necessary and
important• Compliance is essential• In case of refused treatment/diagnosis
complications and new symptoms• Dynamic improvement of diagnostic tools
Diagnosis
Diet
Coeliac Patient
Science
Food industry
Healthcare/social
supports
Family
Treatment = Treatment = DietDiet
• Strict, lifelong diet = exclusion of gluten-containing cereals (wheat, rye and barley)
• Complicated/unknown/special - wheat flour is widely used by the food industry
• Limited availability of GF food• High price of dietary products = costly diet• Naturally GF foods: usually contaminated• Codex Alimentarius and EU-regulations –
world- and Europe-wide standard
Diagnosis
DietFamily
Coeliac Patient
Science
Food industry
Healthcare/social
supports
Healthcare systemHealthcare system
• Very low awareness/ untrained HCP• Shorter diagnostic period/way = lower costs • Screening policy (risk-groups, first degree relatives of
coeliac patients) changed• Patient care = regular follow-up + education
SUCCESS• Co-operation with patients’ organisations
Target: good health and better QoL of coeliacs
Social supportSocial support
• Dietetic products are 3-10-times more expensive than the similar normal products
• Extra costs are not compensated• Missing financial support non-compliance
serious complications and illnesses • Social support of recently diagnosed aged people
is unsolved
Diagnosis
Diet
Healthcare/social
supports
Family
Coeliac Patient
Science
Food industry
ScienceScience• Worldwide popular research topic (genetics,
immunology, pharmaceutical industry, etc.)• ESPGHAN, Prolamin Working Group, EU, etc.• International conferences• EU-funded projects:
– Cluster Project– Prevent CD– CDMEDICS
• Threshold-research– Carlo Catassi et al.: Am J Clin Nutr 2007; 160-6– Anna Gibert et al.: European Journal of Gastroenterology
and Hepatology 2006, 18:1187-1195
www.cdmedics.eu
Diagnosis
DietFamily
Coeliac Patient
Science
Food industry
Healthcare/social
supports
Food industryFood industry
Suitable for coeliacs:- Naturally gluten-free unprocessed foods - Foods for special dietary purposes- Normal/traditional foods – free from any kind and
form of gluten containing cereals - Innovative/novel/functional foods- Regular testing of GF products - Contamination-free GF food are essential
PricesNormalNormal vs. GFGF products
0
200
400
600
800
1000
1200
1400
1600
1800
Kenyér (0,5 kg)
Liszt (1 kg) Száraztészta(0,5 kg)
Édes keksz(180 g)
Sós perec(100g)
Fagyasztottpizza (300 g)
Ára
k F
t
Normál termék ára Gluténmentes diétás termék ára
Diagnosis
Diet
Coeliac Patient
Science
Food industry
Healthcare/social
supports
Family
FamilyFamily
• No information before diagnosis in family• Changed nutrition and lifestyle• Changed quality of life +/- • Lifelong condition lifelong learning • 10-times higher risk: first degree relatives • Help from patients’ support groups/clubs/ coeliac
societies • Consultation with psychologist and dietetitian
Diagnosis
Diet
Healthcare/social
supports
Coeliac Patient
Science
Food industry
Family
Patients’ associationsPatients’ associations
- Encouraged civil society movements- Increase awareness of coeliac disease among
healthcare professionals and the general population
- Providing patients with relevant information- Protecting the rights of coeliac consumers- Projects:
- ‘Eating out GF’
- Traditional-natural-glutenfree- ICD
Patients’ associationsPatients’ associations
Difficult to– establish a society (legal procedure)– find enthusiastic, engaged and educated people
for run a society (volunteers) – find members– comply with national and international legal
requirements and rules– find funding (fundraising)– be transparent, authentic and reliable
Europe
Mediterranean area
Algeria
France
Spain
Turkey
SloveniaItalyCroatia
Montenegro
Albania
Greece
Malta
Israel
Cyprus
Egypt
Tunesia
Lybia
Maroc
Syria
Lebanon
Russia
Ukraine
CroatiaSerbia
Difficulties in MEDICEL countriesDifficulties in MEDICEL countries• Difficult to collect correct information about the GF
diet (low Internet penetration, language problem)• The choice and availability of GF dietetic foods are
limited as well the uncontaminated naturally GF food
• The globalisation changes the eating habits and the traditions
• The healthcare systems are not everywhere ready for diagnosing, testing and treating more coeliacs
• The world financial-economic crises has a significantly negative impact of the development of the Mediterranean area
MEDICEL-AOECS co-opreationMEDICEL-AOECS co-opreation• Where coeliac society does not exist yet, AOECS can
advise people who wants/are ready to built-up and run a patients’ organisation
• Solving the language problem: AOECS member associations can offer continuous consultation (sending scientific/information materials, answering patients’ questions, sending food information/lists, etc.)
• AOECS can invite new and outside Europe associations for workshops, conferences and meetings, can help to organise scientific conferences, trainings for medical professionals
• International Coeliac Day – join to the yearly event for raising awareness of CD
International Coeliac Day20 May 2006
International Coeliac Day International Coeliac Day 20072007
20082008
20092009
SymbolSymbol
Trade mark and not freeTrade mark and not free
®®
European Licencing System
- European Charta
- AOECS Standard
Safe, controlled = reliable food products
for coeliacs everywhere
in Europe (and Worldwide)
Take home messageTake home message
AOECS – MEDICEL co-operationAOECS – MEDICEL co-operation • Ideal platform to networking and assist the
formation and strengthening of coeliac societies/patient’s support groups
• Help in the formulation of awareness campaigns as well as in the dissemination of information in the local language
• Co-operation in the organisation of workshops, conferences and meetings incl. scientific conferences and training sessions directed towards tacking the problems of CD in these countries
Report April 5th 2011CELIAC SOCIETIES IN THE MEDITERRANEAN NETWORK MEDICEL
Country N. Members Organization NotesAlbania no society Algeria no society
Slovenia one 2000 national 8 regionalmember of AOECS
Bosnia more 300 1/canton =10 member of AOECS
Croatia one 1000 national 3 regional member of AOECS?
Egypt no society France one 6500 national member of AOECS Greece one 1300 national 2 members of AOECSIstrael one 10.000 national
Italy one 100.000 national + 20 regionalmember of AOECS
Lebanon no society
Lybia no society
Malta one 450 1 national member of AOECS
Morocco no society Siria no society
Spain more 25 regional2 members of AOECS (F.A.C.E. and SMAP)
Tunisia no society Turkey one was member of AOECS
www.aoecs.org
[email protected]@aoecs.org
[email protected]@aoecs.org
[email protected]@aoecs.org
[email protected]@gmail.com
ContactsContacts
COMMON COMMON CHALLANGECHALLANGE
COMMON COMMON CHALLANGECHALLANGE
![Medics Gone Wild [PIQUE]](https://static.fdocuments.in/doc/165x107/577ce05c1a28ab9e78b327e2/medics-gone-wild-pique.jpg)
