The Cancer Society of Finland maintains a national advice service where healthcare professionals provide cancer advice. Anyone can contact the service to receive advice by calling, by emailing or via an online chat. The service also employs healthcare professionals specialised in oncology who provide genetic counselling. The service is free of charge. Advice service In 2018, the advice service (www.cancersociety.fi/activities/advice-service) received nearly 6 100 contacts, the majority of which were by phone and email. We also opened a second live chat service, which quadrupled the number of chats. Cancer pain hotline The cancer pain hotline is a service that was started in cooperation with Helsinki University Hospital’s Pain Clinic in 2014. The service is intended for patients, their loved ones and healthcare professionals. The cancer pain hotline’s nurses provide advice on coping with cancer pain and, whenever necessary, consult a physician specialised in pain management. The top reasons why people contacted the hotline included uncontrollable pain, insufficient pain medication, problems with using medication, and a lack of knowledge of whom to contact. Benefits advice phone service The Cancer Society’s national benefits advice service provides guidance on questions about income and social benefits. The service was contacted 81 times during the course of the year. The patients’ questions mostly concerned issues related to health insurance and income. The service is run by the Cancer Society of Pirkanmaa. Genetic counselling The aim of the CSF genetic counselling service is to help people find information about their genetic risk of cancer and about whether they should investigate their risk further. The counselling service employs oncology nurses who have received training in genetic cancer risk assessment. The nurses answer general questions about inherited predisposition to cancer. A CSF medical officer specialised in cancer genetics evaluates the need for further studies. In 2018, the genetic counselling service was contacted by 144 people, of whom 63 received a referral for further investigation. Projects The CSF advice service and volunteering section participated in a project run by the association for Russian speakers in Finland. The project aims to increase awareness and inclusion among Russian-speaking immigrants in terms of health and wellbeing, to direct Russian speakers to become independent users of Finnish-language services and providers of Russian-language peer support in Finland, and to develop cooperation with Finnish health organisations. As part of the project, the CSF collaborated with the Association of Cancer Patients in Finland to produce a Finnish, plain-language guide on being a cancer patient in Finland. The guide will also be translated into Russian. The Service Foundation for the Deaf launched the Passi programme in 2018. The programme offers information in sign language for people suffering from diseases, their loved ones and healthcare professionals. The information is provided through lectures, courses, peer support and information materials. During the year, the cooperation with the Foundation included cancer lectures in five different locations in Finland. International congresses A nurse from the CSF advice service attended the European Society for Medical Oncology 2018 Congress in Munich on 19–23 October 2018. The European Oncology Nursing Society (EONS) was involved in organising the congress for the first time. The congress addressed cancer diseases from several different perspectives and presented the latest research results on the treatment of cancer. Other cooperation Cooperation with universities of applied sciences continued during the year. The director of the CSF advice services was invited to universities of applied sciences in the Helsinki metropolitan area to give lectures on the CSF’s activities and advice services. The director gave a total of 15 lectures. The advice services were also presented to visiting international nurse groups at Metropolia University of Applied Sciences. Student nurses from the Netherlands visited Finland and were introduced to the CSF’s national advice service. Rehabilitation support and volunteering During the year in review, the Cancer Society of Finland organised more than 60 adaptation training courses in support of rehabilitation. A lot of active effort was also made to improve volunteering activities. The CSF has a total of 2 500 people performing various kinds of volunteer work. Rehabilitation support The Cancer Society’s rehabilitation support (www.cancersociety.fi/activities/volunteering) is a way to: reduce and prevent the harm caused by cancer and cancer treatment support patients and their loved ones in maintaining their physical, mental and social functional and working capacity, and help them cope through all stages of the disease strengthen clients’ ability to take care of themselves, make full use of their resources and coping strategies, and actively promote their own rehabilitation and health. In 2018, the CSF member associations organised adaptation courses thanks to Veikkaus proceeds granted by the Ministry of Social Affairs and Health, their own funds, and funding from the Social Insurance Institution. The rehabilitation we provide supplements public-sector rehabilitation services. Adaptation training courses Adaptation training courses are intended for people with cancer and their loved ones. Some of the courses are targeted at people with specific forms of cancer or people of a certain age group. The courses are for individuals, couples or families, and they are held either as outpatient courses or as intensive courses at rehabilitation centres. There were 65 adaptation training courses organised with support from the Ministry of Social Affairs and Health, and just over half of them were intensive courses held at rehabilitation centres. There were 39 courses for individuals, 21 courses for couples, three online courses and five courses for families. In addition, there were two courses for Swedish-speaking cancer patients and their loved ones. There were altogether 1 123 applicants for the adaptation training courses. In all, 842 people with cancer and their loved ones attended adaptation training courses. We also collected feedback from course participants. In the participants’ own evaluations, the courses received an overall rating between very good and excellent. The feedback covered 76% of all course participants during the year. Rehabilitation seminar The annual rehabilitation seminar was held in Helsinki in November. The seminar was open to CSF, rehabilitation centre and public healthcare personnel, and had 66 participants. Cooperation Collaboration on developing the adaptation training courses continued with the Rehabilitation Foundation, the Finnish Heart Association, the Finnish Allergy, Skin and Asthma Federation, and the Finnish Psoriasis Association. The CSF collaborated with the Finnish Coeliac Society to organise an adaptation training course for people with colorectal cancer. We also collaborated with the Finnish Association for Mental Health to organise courses for cancer patients’ loved ones. We also participated in the Etäsope project (2018–2020, see https://etasope.fi), which is coordinated by the Finnish Association of People with Physical Disabilities and funded by the Ministry of Social Affairs and Health with proceeds from Veikkaus. Volunteering In 2018, the Cancer Society of Finland systematically developed the activities of volunteers (www.cancersociety.fi/activities/volunteering). The focus was on reinforcing the established structures that ensure the quality of volunteering. We recruited a project coordinator to be responsible for developing the volunteering activities. As part of this development work, we mapped good practices, launched various development processes and carried out pilot projects. The volunteering working group continued its active work and met five times during 2018. The associations involved in the group’s work also carried out their own development projects. The idea is to disseminate the good practices developed in those projects to all other member associations during 2019. The working group comprises representatives of the Cancer Societies of Pirkanmaa, Saimaa, North Savo and South-West Finland as well as the Finnish Association of Children and Young People with Cancer and the Cancer Society of Finland. Support persons Providing peer support and the development of support person activities are a central focus of the CSF’s work. The support persons are peer support persons and palliative care support persons. Experts by experience are also important volunteer workers. Experts by experience are people who have personal experience of a disease or of caring for someone who has a disease. By sharing their expertise with professionals, they contribute to ensuring better patient care and patient meetings. Reports on CSF support persons’ activities have been compiled since 2016. The reliability of the operational figures has improved year by year. The need for further development of the reporting continues, for example due to the increasing demand for palliative care support persons and the increasing tasks of volunteers. According to the reports, there were about 1 000 CSF support persons, and altogether some 2 190 people received peer support. There were at least 6 000 meetings with support persons. Not all short meetings are reported, although they may be very important for patients and their loved ones. There were at least 800 meetings with support persons held at patients’ homes and 1 000 meetings at hospitals and wards. A total of 2 300 meetings were held over the phone and 330 via email. In addition, there were meetings in assisted living facilities and association premises. The activities of support persons in end-of-life care were carried out in cooperation with local hospital districts, wards, assisted living facilities, home care operators or churches. We trained 85 new volunteers to become support persons in end-of-life care. According to the reports, there were 150 peer support groups with a total of some 9 300 participants. The peer support persons are also active at public events, adaption training courses and other events organised by CSF member associations. The support persons were regularly provided with basic training and other training as well as counselling meetings. Working group for the development of hospital volunteering The CSF participates in a nationwide working group that aims to develop the work of volunteers and support persons at hospitals. The work actively utilises the model for hospital volunteers used at Helsinki University Hospital. During the year, work was underway to develop and test TOIVO, a training model for peer support. The model is designed to serve smaller associations and help in organising peer support training across Finland. The CSF, in cooperation with a smaller group formed out of the working group, participated in a meeting with Minister of Local Government and Public Reforms Anu Vehviläinen with a view to improving the preconditions for volunteering in Finland. The CSF’s expert responsible for support person activities was also interviewed on radio about peer support issues. Experts by experience The Cancer Society trained new experts by experience in three locations in Helsinki, in Rovaniemi and in Vaasa. At the end of the year, there were a total of 24 experts by experience. The CSF has also participated in the development and implementation of a model for the further training of experts by experience. The training model was tested in Tampere, Pori and Kuopio. We also actively participate in the Finnish network for experts by experience. In 2018, work was also underway to prepare an internal handbook for experts by experience. The handbook is set to be published in early 2019. Reinforcing the structures and quality of volunteering 2018 was a year of active development. The Cancer Society invested in improving the framework conditions for volunteering, such as the statistics at national level. For the first time, we also carried out a national volunteer survey. The survey produced valuable data for the national-level work as well as detailed reports to benefit the member associations. A total of 430 volunteers participated in the survey. We also developed a register of volunteers, as part of the new client management system (Järkkäri). We formulated the main messages of our volunteering activities and strengthened the volunteering skills of CSF employees by organising volunteer management training. Altogether 35 employees from five of the associations involved in the volunteering working group participated in the training. In autumn 2018, the CSF launched monthly volunteering telemeetings for association employees working with volunteers. In addition, we compiled good practices to support the organisation of volunteer work and drafted different kinds of guides. As a member of the ECL Patient Support Working Group, the CSF participated in drafting volunteering guidelines for European cancer associations. During the year, we established new volunteer tasks within Fressis, for instance, and trained 13 volunteers for rehabilitation development. Together with the Association of Cancer Patients in Finland, the CSF tested a training concept for online volunteering. Five volunteers participated in the training. After Siskot, the association for cancer rehabilitees, had ceased its activities, the decision was made to continue the association’s activities in the form of volunteering and networking under the auspices of the CSF. The founding member of the association worked with our communications specialists to transfer the association’s web contents to the CSF website. New forms of cooperation were started between the association and the CSF in different parts of Finland. In 2019, the Siskot association will become a patient network under the Association of Cancer Patients in Finland. During the year, the CSF was also a partner in a project run by the association for Russian speakers in Finland, Hyvinvointia yhteisvoimin (together for improved wellbeing). The collaboration included training for two CSF employees and eight volunteers.