The CSF maintains a national advice service where health care professionals answer questions about cancer by phone, email or online chat. Trained nurses provide information, support and advice to patients, their loved ones and anyone who is worried about cancer. Nurses also provide genetic counselling. The service is free of charge. The national advice service received nearly 6 650 contacts in 2019, of which there was an increase in LiveChat and email contacts over the previous year. The opening of the second LiveChat service in 2018 saw an increase in the number of online chats. Cancer pain hotline The treatment of cancer pain is assisted by the hotline provided by Helsinki University Hospital’s Pain Clinic and the CSF. The Cancer pain hotline offers a nationwide phone counselling service for patients, loved ones and healthcare professionals. The cancer pain hotline’s nurses provide advice on coping with cancer pain and, when necessary, consult a physician specialised in pain management. The 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 when pain medication proves insufficient. Benefits advice phone service The benefits advice phone service operates as part of the nationwide advice service. It helps cancer patients with matters to do with income and benefits. The Cancer Society of Pirkanmaa is in charge of running the service and the calls are answered by licensed social workers who work with health social work. In addition to income, callers wanted information about patient social security in general. In 2019, issues to do with income in particular were a concern for most callers, but more than one topic, such as employment issues or patient rights, may have been covered during a single call. In autumn 2019, the benefits advice social workers and counsellors became acquainted with the work of the Danish Cancer Society’s social worker and advice service in Copenhagen. Marie Lawaez, director of the Danish Cancer Society’s advice service, arranged the meeting in November. Over the course of a day, participants learnt about the activities of the Danish and Finnish advice services, and reviewed the role of social work and legal aid in advising cancer patients and new social media solutions developed by Denmark. Genetic counselling The purpose of CSF genetic counselling is to assist people who are worried about their predisposition to inherited cancer to ascertain whether to investigate further. Anyone who is concerned about their own, their partner’s or their children’s possible predisposition to inherited cancer, and who would like information on the matter, can contact the cancer association in their area or the national advice service and receive genetic counselling free of charge. At the CSF, genetic counselling is provided by nurses trained in counselling about inherited cancer, who answer questions on inherited cancer on a general level. A medical officer specialised in cancer genetics then evaluates the need for further studies for the genetic counselling clients of all member associations and the national counselling service. In 2019, 100 people (four men and 96 women), 31 of whom were clients of the national counselling service, contacted CSF genetic counselling. Of the total number of clients who contacted the genetic counselling service, 43 received a referral for further examinations. Other activity Projects. In 2018, the Service Foundation for the Deaf launched the Passport Programme. This provides information in sign language to people with various illnesses, their loved ones and professionals through lectures, courses, peer meetings and sign language material. Co-operation with the Service Foundation for the Deaf in 2019 included lectures, with sign language interpretation, on running an advice service. Public lectures were held in six locations: Vantaa, Helsinki, Porvoo, Kerava, Jyväskylä and Turku. Participation at the different venues was abundant and the events were well received. The Passport Programme innovated cooperation between the Service for the Deaf and the CSF to start training support staff for the deaf. Nordic Cancer Counselling Meeting. The Nordic Cancer Counselling Meeting was held in Helsinki on 16 January 2019. In addition to Finland, there were participants from five other cancer societies in Denmark, Sweden, Norway, Iceland and the Faroe Islands. The meeting explored the practices, activities and challenges faced by counsellor nurses in different countries in the field of counselling. The meeting discussed the importance of Nordic counselling and international cooperation in developing counselling services for cancer patients and their loved ones. In October 2019, an account of the meeting was published as a newsletter of the International Cancer Information Service Group (ICISG). Participation in international training. A counsellor (from the national advice service) applied for and was selected for a course organised by the European School of Oncology (ESO): 12th ESO-EONS (European Oncology Nursing Society) Masterclass in Oncology Nursing. Course participants came from all over Europe and one was from the United States. The course was carried out in part in conjunction with the ESO-ESMO Masterclass in Clinical Oncology course for cancer physicians on March 23-28, 2019 in Nauen, near Berlin. Cooperation with vocational colleges. The head of CSF advice services was invited to lecture on cancer nursing, the activities of the CSF and counselling services 16 times at various universities of applied sciences in the greater Helsinki area. Lectures on the advice services were also given to international nursing groups at Metropolia University of Applied Sciences. In cooperation with Metropolia, visits to the CSF by cancer nursing students have also been organised since 2016. The visits were from the Netherlands (Rotterdam University of Applied Sciences) on the topics of cancer and cancer treatment in Finland, the CSF and the na-tional advice service. Students of the vocational qualification in massage therapy from Vocational College Live made a study visit to the CSF with their lecturer. The visit related to the component of the vocational qualification in massage therapy in the prevention of common chronic diseases in the work of a massage therapist that examines key chronic diseases and their risk factors, prevention, lifestyles and issues to be considered in the treatment of cancer patients. The national advice service participated in the Oncology Days, held in Oulu, where the advice service had a stand. Participation in the days was aimed at networking with hospitals and health care professionals implementing cancer treatment and monitoring. The aim is to consolidate the CSF as a natural part of the patient pathway, where the CSF acts as a partner in the care system, and whose activities support the patient’s treatment and rehabilitation. Ef-forts have been made to increase collaboration and the division of labour between the CSF and the public sector in supporting cancer patients and their loved ones. The advice service was also invited to the training event “Good palliative care for the elderly in a multi-professional collaboration” organised by the Villa Glims ward at Espoo Hospital. FICAN. Collaboration continued in 2019 with the regional cancer centres of the National Cancer Centre Finland FICAN, aimed at cancer prevention, providing psychosocial support, and supporting rehabilitation. The advice service focused on identifying the need for psy-chosocial support and writing the different methods of help provided by the CSF at different stages of the patient pathway. Rehabilitation. The advice service organised two nationwide BRCA open rehabilitation courses, coordinated by a geneticist. The BRCA open course for people with cancer was held in the spring of 2019 and the BRCA open course for people who do not have the disease was held in the autumn. Training. For several years, the advice service has organised a cancer seminar together with Fioca – the training and publishing company of the Finnish Nurses Association – for healthcare professionals who meet with cancer patients and their loved ones in their daily work. In 2019, the sixth such cancer seminar was held in Helsinki. The subject of the training days was rare cancers. During the year, nurse counsellors participated in various cancer trainings, updating infor-mation and networking with health care professionals involved in cancer care. Helsinki Biobank (HUS). The “themed month information sessions” that were started with Helsinki Biobank in 2018 continued in 2019. The information sessions were held at various offices of the Hospital District of Helsinki and Uusimaa (HUS), and the CSF’s advice service participated in the events by having a presentation stand and sharing information about the CSF and by networking with specialised care units. Financial support. The CSF’s Social Committee assists cancer patients who are in financial difficulties with grants from the Cancer Foundation. Applications received by the CSF are prepared by the advice service, after which the Social Committee makes decisions about the beneficiaries. Rehabilitation support and volunteering Rehabilitation support Rehabilitation support is support provided by CSF professionals for people with cancer and their loved ones. Rehabilitation support and the services and activities provided by various member associations aim to reduce and prevent the harm caused by cancer and its treat-ment, and to support the patients’ and their loved ones’ physical, mental and social functioning and woking capacity and ability to cope with everyday life at all stages of the disease. A rehabilitative approach and rehabilitation services strengthen the client’s ability to take care of themselves, draw on their own resources and means of coping, and actively promote their own rehabilitation and health. The CSF’s key rehabilitation support service is adaptation training. Adaptation training is a group-based, professionally supervised goal-oriented activity. The purpose of adaptation training is to provide information about cancer, having cancer, and to support the physical, mental and social recovery of people with cancer and their loved ones in the personal life situation of each individual. The activity aims to strengthen patients and their personal re-sources and means of coping. CSF adaptation training courses were carried out with assis-tance from the Ministry of Social Affairs and Health (Funding Centre for Social Welfare and Health Organisations, STEA), self-funding, and funding from the Social Insurance Institution of Finland (Kela). In 2019, a total of 56 courses were arranged with the assistance of the Ministry of Social Affairs and Health (Funding Centre for Social Welfare and Health Organisations, or STEA). The courses were either cancer-specific or thematic and practical courses. Courses were also provided for cancer susceptibility gene carriers (healthy or sick) and their relatives. The courses were for individuals, couples or families. Slightly more than half of the courses were held in rehabilitation centres as intensive courses and the other half were either openended courses, online courses, or combinations of these. Of the adaptation coaching courses, 35 were for individuals, of which 10 courses were conducted exclusively for loved ones. There were 17 courses for couples, four family courses, three online courses and two combinations of these. One course was conducted in 2019 for Swedish-speaking cancer patients and their loved ones. There were altogether 1,065 applicants for adaptation training courses and a total of 699 cancer patients and their loved ones participated in them. During 2019, evaluation information about the courses was collected using feedback forms, and feedback was received from 81% of the participants. The overall grade of the courses in the evaluation of the participants was between very good and excellent. Follow-up information was also collected during 2019 from a few courses using follow-up forms. These were sent to participants between three and six months after the end of the course. According to the follow-up forms, the courses had, among other things, helped the participants to identify their own resources and cope better in their daily lives. Rehabilitation development work is actively done as an internal activity in the CSF and in close cooperation with the bodies that mainly fund cancer rehabilitation (Kela and STEA), regional cancer centres (FICAN) and other organisations providing and developing rehabilitation activities. In 2019, development work focused on remote rehabilitation courses, supporting the personal goals of the course participants and customer segmentation, which resulted in the completion of customer profiles, descriptions of customer support, and service needs using service design methods. Remote adaptation training activities were developed as part of the STEA-funded Etäsope project (2018–2020) coordinated by the Finnish Association of People with Physical Disabilities. The development of support for the individual goals of the participants in the course was continued by applying the goal-setting SPIRAL board game created by the Rehabilitation Foundation as part of the course activities. During 2019, a questionnaire was developed for the Living Skills Motivation and Assessment Tool to help course participants identify and describe their current situation, health and well-being factors, their own personal resources, and to identify their goals for personal change and evaluate the realisation of their goals. The Living Skills motivation and assessment tool will be piloted during 2020. The CSF plays an active role in the rehabilitation networking of organisations, in the KUVE rehabilitation network coordinated by the Finnish Federation for Social Affairs and Health (SOSTE), in the adaptation training network of organisations (SOPE), and in the open rehabil-itation network coordinated by the Finnish Osteoporosis Association and its development group. The general benchmarking of adaptation training activities was continued together with the Rehabilitation Foundation, the Finnish Heart Association, the Allergy, Skin and Asthma Federation, and the Finnish Psoriasis Association. A representative of the CSF also on the cooperation and development group involving Kela, STEA and a few organisations. Networking among organisations aims to influence the status of rehabilitation nationally, improve the availability of rehabilitation, develop rehabilitation and evaluate and demonstrate the benefits and effects of rehabilitation. In terms of rehabilitation support, the ‘FICAN – Patient Pathway’ material included recommendations for the development of cancer-related rehabilitation support and rehabilitation in public health care. The annual rehabilitation seminar was held in Helsinki in November 2019. The event was an in-house training seminar for CSF professionals, focusing on the support needs of course participants and supporting their personal goals. The seminar was attended by a total of 42 experts from regional cancer associations and national patient organisations. Volunteering CSF volunteer activity aims to provide support and activity to all those affected by cancer. We provide our volunteers with meaningful things to do and ways to do good. Cancer volunteers support people with cancer and their loved ones at all stages of the disease. A total of 4 400 people work in the CSF in various voluntary positions. CSF volunteers are a significant resource for the organisation. In the coming years, we want to invest systematically in volunteering and in developing the various types and tasks of volunteering, internal processes and operating models. During 2019, an estimated 900 new volunteers were involved in CSF activities, including as elected officials of member associations, support persons, group or club instructors, active members of member associations’ local branches, activists, and event helpers and volunteers at various member associations’s happenings. For the second time, a nationwide volunteer survey was conducted for CSF volunteers. Altogether, 673 volunteers responded to the survey. The survey provided information on the implementation of volunteering in the CSF and on the development requirements for activi-ties nationwide. The member associations received association-specific reports on the results of the survey so as to develop their own volunteer activities. A register describing vol-unteer activity was developed within Järkkäri, the CSF client management system. In 2019, the development of volunteer activity was continued systematically and more extensively than in previous years. The structures, processes and quality of volunteer work were further developed. During the year, as a result of the joint development work, the common operational principles for CSF volunteering were completed, including a description of the CSF’s volunteering process, operating instructions and a “volunteer pathway”. As part of the operational process, new contract templates for volunteering, experts by experience activities and support staff volunteers were drawn up. The volunteering working group was active and met five times during the year. The working group consists of representatives of the cancer associations of Pirkanmaa, Saimaa, North Savo and Southwest Finland, as well as Finnish Association for Children and Young People with Cancer, and the CSF. In the autumn of 2019, the Cancer Society of North Karelia also joined the group. Volunteering development projects and pilots were carried out in the associations belonging to the volunteering working group, where good practices were presented and experiences were shared with other associations in the volunteering working group meetings and executive meetings, and with monthly remote morning coffee sessions with employees of associations working with volunteers. The expertise on the part of CSF employees concerning volunteering activity was strengthened by the organisation of volunteer management training courses. The aim of these is to define and strengthen volunteering within the CSF, to support the arrangement of the voluntary activities of member associations, and to provide tools for coordinating and carrying out activities. The training activity was attended by 41 employees from 12 regional cancer associations and a nationwide patient organisation. By the end of 2019, 80 employees from member associations had attended volunteer management training. In addition to training, monthly volunteer remote morning coffee sessions were continued. The CSF is involved in the Patient Support Working Group of the Association of European Cancer Leagues (ECL) and acted as the responsible organiser of the working group meeting in Helsinki in May 2019. As a member of the ECL, the CSF participated in the development of guidelines for volunteering by European cancer societies. The CSF acts as a partner in the project of the association for Russian speakers in Finland Hyvinvointia yhteisvoimin (Together for improved wellbeing). As part of this collaboration, discussion groups were launched in the autumn of 2019 for the Russian-language Cancer Clinic at Meilahti with the regional cancer association. Support person activity is a crucial form of volunteering at the CSF. It aims to promote the well-being and recovery of cancer patients and their loved ones from the hardship posed by the disease. Support person activity involves peer support and palliative care support activity. In autumn 2019, a working group for support personnel activities was re-established, consisting of employees codifying and developing the support person activities of ten different member associations. The group aims to evaluate and develop the support person activities of the CSF nationwide. The joint development and preparation of activities promotes coherence, commitment and, above all, equal access to support services for cancer patients in the CSF. Monitoring information on the implementation of support person activity has been collected since 2016. During 2019, the reporting and statistics on support persons were developed to be more functional and reliable. During the year under review, there were 1 074 support persons in the CSF, of whom 584 had received basic training in peer support, 295 had received additional training in palliative care and 195 had received group training. Basic train-ing in support person activity was arranged in regional cancer associations and patient organisations throughout Finland. 128 people participated in the support person training for palliative care and 273 people participated in the peer support person training. During the year, three peer support group instructor training courses and two trainer instruction courses were organised for CSF employees. Resource planning meetings and training courses were also arranged for support persons in different parts of Finland, where support persons received assistance for their own coping and work with people with cancer or their loved ones. A total of about 8 500 people received assistance from support persons. There were an es-timated 10 500 meetings with support persons. Of these reported meetings, about 1 000 took place at patients’ homes, 3 300 in hospitals and hospital wards, 3 400 by telephone, and 360 times via e-mail. In addition, other meetings have been held in hospitals, service homes, associations’ offices, at events, and in suitable public spaces. It is not yet possible to report all the support person meetings held. There were 139 peer support groups conducted by support persons. The groups included a total of some 8 200 participants. The support persons also took at various public events, adaptation coaching courses and other association events. The hospice support personnel activities were carried out in cooperation with the local hospital district, ward, assisted living facility, home care operator or church. Basic training materials for support person activity were updated in 2019 and in part revamped. In addition to the basic training materials, the training materials used for updating training was also completed. In 2019, a resource planning model was developed for support persons, which was piloted in various member associations. The purpose of the model is to provide support and content to CSF employees for more systematic resource planning concerning support persons. The CSF’s support person work was presented to the Estonian Cancer Society. To support the advocacy work for support persons, recommendations were also made for the National Cancer Centre Finland FICAN patient pathway materials with respect to support person activities. These recommendations are aimed at decision makers as well as healthcare professionals and seek to bolster the development of support services and care pathways for patients and their loved ones in public healthcare. The CSF participated in a nationwide working group that aims to develop the work of volunteers and support persons at hospitals. The development of the TOIVO peer support training model was continued by making an online version of the training course in spring 2019. New OLKA volunteering projects were started in different parts of Finland. The CSF supported the cooperation between local cancer associations and OLKA projects and participated in organising and implementing the annual national hospital volunteers summer seminar. Experts by experience. By the end of 2019, the CSF had a total of 28 experts by experience trained by the organisation and the Finnish network for experts by experience. Experts by experience are people who have had challenging life experiences, cancer or who have cancer or their loved ones who are able to pass on experiential knowledge. The role of the expert by experience is to increase understanding and knowledge among professionals and students in various fields, as well of the general public. Their experiential expertise is utilised in developing activities and services. During 2019, new experts by experience were trained in cooperation with three other organisations in Hämeenlinna. The CSF has been developing and implementing a reform of the basic training of experts by experience in the Finnish network for experts by experience. The CSF is active in the network, where experiential activities are developed both nationwide and in the activities of experts by experience in the CSF. A handbook guiding the internal activity of experts by experience in the CSF was completed in August 2019.