CANCER PATIENTS‘ ASSOCIATION OF SLOVENIA; Lung Cancer Support Division

1. CANCER PATIENTS‘ ASSOCIATION OF SLOVENIA; Lung Cancer Support Division Andreja C. Škufca Smrdel, Marija Vegelj Pirc, Blaž Bajec

2. in year 2011: Incidence of lung cancer: 1.204 Prevalence: 2.525 Mortality: 1.119 Cancer Registry ofRepublic of Slovenia Slovenia: 2 million inhabitants The first support group in Slovenia has been established in Ljubljana in 1984. Currently 20 support groups of Cancer Patients‘ Association of Slovenia spread all over the country and 2 Info centers for individual peer support.

3. SUPPORT FOR CANCER PATIENTS AT CANCER PATEINTS‘ ASSOCIATION OF SLOVENIA • Programme is based on a premise that well rehabilitated cancer survivor can be a valuable source if support to another patients facing the similar experience of cancer • 20 self-help groups in „On the Way to Recovery“ are open for every cancer patient. They meet on monthly basis. • Individual Cancer Support in Associations‘ Info centers offer individual counselling, information and distribution of booklets to relatives and patients. • Lung Cancer Support Division

4. SUPPORT GROUPS The first support group in Slovenia has been established in Ljubljana in 1984. Currently 20 support groups are spread all over the country. ● Murska Sobota ● Trbovlje ● Ptuj ● Velenje ● Tržič Radovljica ● Novo ● mesto ● Celje ● Kranj Slovenj ● Gradec ● Maribor ● Krško Sežana ● ● Postojna ●Ribnica Ilirska Bistrica ● ● Ljubljana Nova Gorica ● Črnomelj ● Koper ● ● Izola The laststarted in 2013 in Ilirska Bistrica.

5. Each support group is lead by a volunteer team – volunteer coordinator of self-help group (with personal experience of cancer) and professional manager. Support groups carry out their activities in cooperation with the local health institutions. • Support groups provide • regular monthly meetings, • organizing other activities (expert lectures, supervised gym exercises, swimming, awareness activities, hiking, relaxation techniques exercises etc.) Volunteer teams on the supervision meeting 5.3.2008 The founding meeting of the first support group intended for all cancer patients, Tržič, 2009 15. ascent to Triglav, the highest mountain in Slovenia (2864m) for members of support groups

6. INDIVIDUAL CANCER SUPPORT – INFO CENTRES Intended for patients (hospitalized and outpatients) with different cancer sites at all stages of treatment and rehabilitation and their relatives. • The volunteers are available for • conversation, • counseling, • Associations‘ publications. Info Centre Poster Cancer volunteers at the opening of the first Info Center at the Institute of Oncology Ljubljana, 20.4.2009 The Associations‘ publications ● Maribor ● Ljubljana Info center Maribor opening ceremony at the University Medical Centre Maribor, 27.1.2012

7. CONDITIONS TO BE INCLUDED AS A VOLUNTEER TO SELF-HELP PROGRAMME „ON THE WAY TO RECOVERY“ • In 30 years guidelines were developed on the basis of Reach to Recovery International Volunteer Breast Cancer Support for volunteers of Cancer Patiens‘ Association of Slovenia. They are: • Support group in „On the Way to Recovery“ is lead by a volunteer team – volunteer coordinator of self-help group (with personal experience of cancer) and professional manager, • Volunteer coordinator and individual counsellor • can enter the training programme 2 years after the treatment; • is psychologically and physically healthy, • has successfully completed obligatory introductory training, got a confirmation of Coordinating commitee of Way to Recovery, received a diploma (as well as the professional manager) • signes to adhere to the procedures and regularly attends supervisions and trainings, (as well as the professional manager)

8. SUPPORT DIVISION SPECIALIZED ON LUNG CANCER PATIENTS On 3 November 2014 a Lung Cancer Support Division was established to act as an advocate group for lung cancer patients, as part of the Cancer Patients Association of Slovenia. Initiative was lead by Prof Tanja Čufer, MD, PhD and Matjaž Zwitter, MD, PhD.

9. SUPPORT DIVISION SPECIALIZED ON LUNG CANCER PATEINTS Members of Coordinating Board include patients and experts as well as relatives: Predsident of Lung Cancer Support Division: Prof. Tanja Čufer, MD, PhD Members of the Board: Assoc. Prof. Anton Crnjac, MD, PhD, Gorazd Dominko, Mugdim Ibrahimagić, Peter Koren, Viljem Kovač, MD, PhD, Mirjana Rajer, MD, Anja Simonič, PhD, Živka Škrabar.

10. SUPPORT DIVISION SPECIALIZED ON LUNG CANCER PATEINTS • Current activities to support lung cancer patients: „How to live with lung cancer?“ • Experts from University Clinic of Respiratory and Allergic Diseases Golnik, University Medical Centre Maribor and Institute of Oncology Ljubljana produced a programme to support lung cancer patients and their relatives. • Programme is comprised of information on treatment and psychosocial support. • 15 May 2015 – Murska Sobota • November 2015 – Nova Gorica

11. SUPPORT DIVISION SPECIALIZED ON LUNG CANCER PATEINTS Networking internationally: http://www.celcapa.net/slovenian/celcapanet/ http://www.lungcancereurope.eu/ Other Associations giving support to lung patients, including lung cancer patients in Slovenia: Pulmonary and Allergic Patients Association of Slovenia Syndicate of Slovenian Asbestosis Patients Association OZA – Association of Patients with Asbestosis

12. PERSPECTIVES FOR 2016? THANK YOU FOR YOUR ATTENTION!