European Health Forum Gastein Lunch Workshop 1 6 October 2005

1. European Health Forum Gastein Lunch Workshop 1 6 October 2005 What do the patients expect from health professionals? Rod Mitchell, Chairman European Federation of Crohn’s & Ulcerative Colitis Associations - EFCCA

2. What do patients expect from health professionals …1 • Improving Patient – Doctor Interaction + with all health professionals at what-ever level : Primary care/hospital out/in and home • Less waiting, sometimes improved accommodation, flexible appointments, faster diagnosis, easily understood language to be used in verbal and written communication/information • Consideration of alternative/complementary therapies • Recognition that many patients are fearful of surgery • Acknowledgement that patients with long-term conditions can in time share care, self treat and do understand their illness

3. What do patients want … 2 • Good info and advice from trusted sources taking account of various levels of age, education, culture and custom and choices … “cartoons” may also help • Time to ask questions, friend or family member in attendance as necessary • Same Doctor, Nurse specialists to be available and/or trained contact for refer back after/between consultations • Pharmacist remain most trusted , further studies to maximise use of Pharmacy suggested • Info via media – TV, Newspapers, Journals if accurate and responsible + Internet with Trust Mark • Community nurse with Video to connect isolated patients with health professionals for consultation

4. What do patients want … 3 • Learning more about their condition while at GP or in hospital also through TV monitors and interactive learning systems • At home – improved social etc services on return home from hospital at weekends. Patient Groups may assist. • Interactive learning could continue at home with Patient Group support. Expert Patient Programmes now known to work and are economic - again patient groups could assist in running EPP schemes ,especially where chronic condition uncommon • Remove the taboo and stigma of some illnesses/disabilities in society, health professionals, governments ++ to help • Maximise use of European Health card inc medical history to aid efficiency and patient safety, when treated in another country

5. Conclusion • Take into account that some patients want to use own approach to living with chronic illness • Never forget that patients families and carers have many challenges to overcome in meeting their expectations and in their relationship with health professionals • Further develop work from Informed Patient Project, Oxford Dialogue and others to complete the Guiding principles for health professionals communication. Take also account of ongoing EU projects • Patient associations must ensure that they reflect the true wishes of the patient community and work with consumers organisations for a better understanding as each has a role • Remember also that the patients expectations may lead to need for increased healthcare resources

6. EFCCA is working at the European level to improve the wellbeing and quality of life of IBD patients of all ages and is for… • Exchanging information and best practice providing advocacy and support • Facilitating + encouraging scientific and other IBD research and working for improvements to the patients Q of L, treatments and care • Co-operation and dialogue with Doctors, health- care teams and health authorities and with the pharmaceutical and medical devices industry • Cross frontier activities about IBD, travelling and contact with other groups world-wide • Awareness raising of Crohn’s and Colitis IBD, the taboo about bowels + European patients concerns whatever the age EFCCA founded 1990 as coalition, Belgian registered now with 22 Europe-wide member national IBD Patients Associations Estimated 1.2million patients cross Europe with Crohns and Colitis