OSTOMY ASSOCIATION and COLORECTAL CANCER

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1 OSTOMY ASSOCIATION and COLORECTAL CANCER

2 Ostomists are people with permanent or temporary stoma or ureter terminal to the abdominal wall Reasons for ostomy are always serious illness PROBLEMS - illnes - psychical - social HELP AND SUPPORT COULD BE FOUND IN EVERY STOMA ASSOCIATION

3 OSTOMY ASSOCIATION IOA EOA Czech ILCO World association Doc. Kleinwächter Former president European association National association Ostrava Opava Nový Jičín Brno Zlín Praha Příbram Tábor Kladno K.Vary Cheb Clubs

4 NGO Organisation Czech ILCO associates ostomy clubs in CR Helps to defend interests of Czech ostomists in communication with: Goverment, Members of Parliament and Councillors, health insurance, health officers, medical devices company. Provides information to stomics and information to the public.

5 Main activities of Czech ILCO cooperation with international associations connection to the World Ostomy Organisation preparing volunteer visitors organization reconditioning residence coordination clubs

6 The most common primary reason is the tumor of the colon ZÁKLAD: Všichni respondenti, n=99 OTÁZKA: q29 Jaký je primární důvod vaší stomie? after irradiation, tumor in the urinary bladder jiné důvody 15% neodpověděl 3% záněty tlustého střeva 19% nádor tlustého střeva 63% ZDROJ: STEM/MARK, Stomici, 11/2009

7 Patients attend doctor at an advanced stage of disease Myslíte si, že existují vyšetření, která pomohou odhalit rakovinu tlustého střeva a konečníku v časných stádiích? ZÁKLAD: Všichni respondenti, n=99 OTÁZKA: q41 neodpověděl/a 15% ne 2% Myslíte si, že v České republice většina pacientů s rakovinou tlustého střeva a konečníku navštíví lékaře? ZÁKLAD: Všichni respondenti, n=99 OTÁZKA: q43 velmi pozdě, tj. v metastazující fázi nemoci 6% neodpověděl/a 13% včas, tj. v ranné fázi nemoci 5% ZDROJ: STEM/MARK, Stomici, 11/2009 ano 83% ZDROJ: STEM/MARK, Stomici, 11/2009 spíše později, tj. v pokročilejší fázi nemoci 76%

8 Propojený obrázek nelze zobrazit. Příslušný soubor byl pravděpodobně přesunut, přejmenován nebo odstraněn. Ověřte, zda propojení odkazuje na správný soubor a umístění. Propojený obrázek nelze zobrazit. Příslušný soubor byl pravděpodobně přesunut, přejmenován nebo odstraněn. Ověřte, zda propojení odkazuje na správný soubor a umístění. Czech Republic is at the forefront of the world in occurrence of CRC Czech ILCO helps to promote prevention CRC - On traveling exhibitions at the League Against Cancer - at public events

9 We want to know more about colorectal cancer Czech ILCO organise seminars within the project Know CRC for its members actively participates in Brno Oncological Days South Bohemia Oncological Days Prague Onko Days We are working on a project You and We Together

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11 Project You and We together Medium-term targets: to abolish taboo topic bowel cancer in the eyes of the public and the media to create an open space for communication with an emphasis on middle and younger generation to help to abolish the isolation of patients to help in sharing experiences of patients and their families to provide an information of the correct quality and affordable health care and treatment to provide support to patients and their associations in discussion with the media, payers, physicians and goverment authorities

12 Project You and We together Long-term target: to inform the patients as the informed patient is better than treated patient to create an active community of patients being able and willing to take fate into their hands, to help themselves and others Medium: Web links of communication social networking medical professionals patient organizations public government authorities and the media

13 INFORMATION AND ADVISORY CENTRE FOR PEOPLE WITH a stoma bowel DISEASE Karlínské nám 59/12, Praha 8, room no.509, building SPCCH service is provided by trained volunteers FIT-ILCO When? Monday from 2pm to 6pm/Thursday from 9am to 1pm After an agreement by mob: , predseda@ilco.cz We should meet any time. If you want know more about us, come to see us. You are widely invited

14 Thank you for your attention Marie Ředinová