Two out of three people with cancer recover, and more and more people with cancer live with chronic disease for years or even decades. Due to good treatment outcomes, the need for rehabilitation support for people with cancer is increasing from diagnosis, during and after cancer treatment. Strengthening the knowledge base Research. The Cancer Registry is continuing its research on the health and social determinants of later life of young cancer survivors. Partners include the Nordic research communities and those treating patients with special needs in Finland. Cooperation with Cancer Centres (FICANs). The Cancer Registry aims to ensure that the health system pays particular attention to recording patient data, not only to ensure access to cancer information, but also to support data management. The aim is to produce a nationally defined minimum model of patient information that can be used as a basis for the so-called quality register and to describe in more detail the patient’s treatment, disease progression and other clinically relevant information. The design of cancer quality registers will continue in collaboration with FICANs and THL. To this end, the Cancer Treatment Quality and Effectiveness Monitoring Group, established for this purpose, met three times in 2021. Advice services In 2021, the CSF’s advice services a national advice service and advice services provided by member associations. The aim of the advice services was to provide information and psychosocial support to cancer patients, their loved ones and others concerned about cancer. Psychosocial support was provided equally according to client needs in different parts of Finland at different stages of the disease and in the transition to everyday life after the disease. Health promotion work was a part of all services. The national helpline provided advice by telephone and online in Finnish, Swedish and English. Benefits advice phone service. The service provided information on matters to do with income and benefits for people with cancer. The benefits helpline is part of the national helpline. The helpline also introduced an e-mail service to answer e-mails sent in during the opening hours of the helpline. The increasing financial difficulties of cancer patients were reflected in the number of contacts. Statistical reporting on benefits advice was developed and a statistical tool will be introduced at the beginning of 2022. Cancer pain hotline. The hotline continued to operate as before. The service is provided by Helsinki University Hospital’s Pain Clinic in cooperation with the national advice service. The Cancer pain hotline is answered by specialist nurses and doctors who are experienced in pain management and can answer questions about it. The reasons for calls include uncontrolled pain in cancer patients, inadequate pain medication, problems with pain medication or not knowing where to go for pain management. Most of the problems were resolved during the call. The calls brought to our attention cases of cancer patients in hospice care without adequate pain relief. The Cancer pain hotline nurses gave lectures to all the staff of the CSF to raise awareness of the service and spread the word about it throughout Finland. A new chat application was introduced in the chat advice service. The number of contacts dropped after the change, and efforts were made to make the chat more functional so that patients and their loved ones could find it again. The activity picked up towards the end of the year. Genetic counselling has been provided since 1995. In 2021, the genetic counselling service provided by a hereditary doctor addressed the hereditary risk of cancer in nearly 200 people. The genetic information obtained is of great importance to the enquirer, as it refines the diagnosis and brings forward the diagnosis of relatives at risk of developing the disease. It also facilitates the planning of follow-up and preventive measures and allows predictive genetic testing to be offered to relatives over the age of 18. After screening, claimants will be eligible for prevention and early detection. If no family history of a genetic defect is found, the person can be exempted from follow-up and their cancer risk will be the same as in the general population. In 2021, two outpatient rehabilitation courses for cancer patients and healthy BRCA gene carriers were organised through Teams. Development work. Collaboration and integration of activities with regional counselling services continued. In-house Teams training sessions on cancer genetic counselling were organised for carers from regional member associations. Training cooperation was initiated with the Finnish Bone Society, three distance training sessions were held for HUS oncologists, training was provided for the Let’s Talk about Children service mode and five lectures were given by experts from the Cancer Registry on the different activities of the Cancer Registry, including colorectal cancer screening. Cooperation with universities of applied sciences continued as in previous years. Rehabilitation support Two out of three people with cancer recover, and more and more people with cancer live with chronic disease for years or even decades. Due to good treatment outcomes, the need for rehabilitation support for people with cancer is increasing from diagnosis, during and after cancer treatment. Goals. The rehabilitation support provided by the CSF promotes and maintains the functional capacity and well-being of people with cancer, which are fundamental to a good quality of life. The CSF provides rehabilitation support in a timely manner and meets the support needs of clients at different stages of the disease. The rehabilitation support provided by cancer organisations complements public rehabilitation services. Courses. The CSF and its member associations offer thematic, goal-oriented and professionally supervised group courses for cancer patients and their loved ones nationwide, with the help of STEA and self-financing. The courses are delivered both face-to-face and online. Courses are organised as three-five day sessions at rehabilitation centres or as outpatient rehabilitation sessions lasting several weeks. The aim is to provide information, strengthen the personal skills, resources and coping mechanisms of cancer patients and their loved ones, and support them in their everyday coping with the disease. The courses also provide professionally guided peer support and help participants to take an active role in their own rehabilitation and to increase their wellbeing In 2021, a total of 46 courses were organised with STEA support, which were cancer-specific, thematic or functional. Courses were also organised for cancer susceptibility gene carriers. Courses were available for individuals, couples or families. In the rehabilitation centres, there were 25 courses intensive courses offered, 12 open courses, seven online courses and two combined courses. The Covid-19 situation led to changes in course activities. Courses were postponed and cancelled, and some courses went fully or partially online. The number of applicants and participants was lower than in previous years due to the corona situation. There were 708 course applicants and 480 participants from cancer patients and their families. The largest group of participants were women with cancer. Despite it being a difficult year, the overall rating of the courses was 4.5 on a scale of one to five. Cancer and sexuality survey. This was conducted in spring 2021, found that only one in five cancer patients who responded had discussed their sexuality concerns with care staff, although 85% were concerned about the changes caused by the disease and treatments. Altogether 727 cancer patients responded to the survey. Development. Due to the challenges posed by the pandemic, activities were developed mainly through participation in the networks of organisations. In 2021, two theses were completed, providing information and suggestions for improvements concerning the information and support needs of parents with cancer and their families and on the use of family services. This information will be used to develop services. Living skills motivation and assessment tool. The use of the tool was limited during the year. There was not enough time to familiarise clients with the tool and to use it in their work, as the changes in course activities caused by the pandemic created additional work for the member associations responsible for running the courses. Rehabilitation Steering Group. This is a group of experts drawn from the CSF’s member associations that monitors, plans and develops the organisation’s rehabilitation support services and course activities. Four meetings of the steering group were held during the year. Etäsope project. This was coordinated by the Finnish Association of People with Physical Disabilities and funded by STEA, developed and conducted remote courses. The project ended during 2021. Research derived from the project showed that online courses can bring about positive changes in the wellbeing of clients. Networking. The CSF is active in the Rehabilitation Network (KUVE), coordinated by the Finnish Federation for Social Affairs and Health (SOSTE), the Adaptation Training Network of Organisations (SOPE) and the open rehabilitation network and its development group coordinated by the Finnish Bone Society. The general peer development of activities continued together with the Rehabilitation Foundation, the Finnish Heart Association, the Allergy, Skin and Asthma Federation, the Finnish Psoriasis Association and the Finnish central Association for Mental Health. The annual Rehabilitation seminar was held as an internal CSF webinar. It was arranged in collaboration with the relationship counselling centre Kataja and the theme was relationship resources and crises when there is illness in the family. Brief therapy. The CSF, with the help of STEA, coordinated and developed, together with its member associations, free remote brief therapy for cancer patients and their loved ones. STEA’s support ended on 1 August 2021, after which the rest of the year’s activity was self-financed. Therapy service. This was primarily intended for clients with mild symptoms of depression and anxiety or whose life situation was challenging and stressful due to cancer. The therapy was based on a resource and solution-focused brief therapeutic approach. The aim of therapeutic discussion was to support the client in achieving their personal goals for change, to find solutions to issues that burden their own coping and to support their agency in promoting their own wellbeing and functional capacity. Depending on the client’s individual needs, the number of sessions ranged from one to 10. The therapy was carried out individually or as couples or family therapy and was conducted by two therapists. During the year in review, a total of 250 clients attended brief therapy, of whom 173 were ill, 49 were loved ones and 25 were family members. Altogether 142 clients were employed, 71 were retired, 16 were unemployed and 19 were students. The brief therapy received good feedback from stakeholders, partners and clients. The referral process and the content of the brief therapy were developed in close cooperation with CSF counsellors. Volunteer and support person activities A total of 3 600 people volunteered for various activities within the CSF. The CSF’s volunteers are a major asset for the organisation. Volunteering in 2021 Volunteer Development project. This was carried out in collaboration with member associations and volunteers to implement the stages of the volunteer path, volunteer work description and volunteer management for those working on volunteering. In addition, webinars on volunteer leadership training were planned for the period 2022-2023, which were delivered by the business management consultancy Osana Yhteistä Ratkaisua. Management training. Support and training was provided to support and develop the management and evaluation work of those working in voluntary activities of member associations. In addition, monthly remote volunteering coffee mornings were organised for staff and a national seminar on volunteering was held. Volunteer survey. The survey had 475 volunteer respondents. The survey provided information on conducting voluntary work and the need for further development of volunteer activities nationwide. The member associations received the results of the survey in the form of association-specific reports for the development of their own volunteer activities. Russian volunteers. Training was provided for 17 new Russian-speaking volunteers in cooperation with the Central Organisation of Russian Speakers in Finland and two member associations. Their task is to help and support Russian-speaking cancer patients and their loved ones to access the services and activities of cancer organisations. Experts by experience. Together with the national Experts by Experience Network, the CSF organised basic training for new experts by experience in Vaasa and a further training course in Kokkola. Five online training courses were organised to support active experts by experience. In addition, a hybrid training model and lecture materials were produced for the online platform. CSF experts by experience are knowledge sharers who are trained by the Experts by Experience Network and the CSF to increase understanding and knowledge of cancer among professionals in different fields, students and the wider public. Support person activity is a key form of volunteering. A support person can support a patient or a loved one through the different stages of the disease, as a peer support person or as a palliative care support person. The development group for support person activities comprised 10 workers from member associations and met every couple of months. The group evaluates and develops the support person activities of the CSF and promotes access to support services nationwide. Peda.net e-learning. Peer support training was produced for the platform and trainers’ material for this e-learning was updated. Five member associations participated in the content production and the peer support training was piloted among three associations. Six personal videos on the importance of peer support were produced for marketing. Client survey on support person activity. The client survey was carried out between August and October. In the survey, 223 people anonymously reported their experiences of receiving support. A large majority of respondents experienced the support they had received as positive and meaningful (60/125 of respondents), and 74% of respondents would recommend the support person service to others seeking assistance. The survey showed that the marketing, structures and practices of support person activities need to be strengthened to make as many people as possible aware of the possibility of becoming a support person and to make access to the service as easy as possible and the experience as positive as possible. Stastics. The reporting and statistics on support person activities continued to be developed with a view to integrating them into the Järkkäri client management system. Altogether 824 peer and hospice support persons were employed by the CSF during the year. There were 596 peer support persons involved, 301 palliative care support persons and 151 peer support group facilitators. Around 2,600 people received support from support persons. There were around 7,600 client-support person encounters. There were 94 peer support groups run by support persons. The peer support groups met 590 times during the year, and 5,217 visits were made to the groups. Support persons were offered guidance to help them in coping and working alongside a person with cancer or a loved one. Group guidance was provided 149 times during the year. The participation rate nationally was 1241. Training. In addition to the Peda.neti peer support person training, two peer support group facilitator training courses were run in collaboration with member associations. Remote refresher peer support group training was provided remotely nationwide twice and two sessions of the Good Everyday Life for Children refresher training for volunteers in the context of the Let’s Talk about Children work per member association. Mentor training was piloted for longer-term support persons at the Cancer Society of Pohjanmaa by the Cancer Society of Satakunta. Nationally, 77 people participated in the palliative care support person training, 178 in the peer support person training and 55 in the peer support group facilitator training. A total of 439 people participated in refresher courses nationwide. OLKA cooperation. Five regional cancer associations and two national patient organisations and their volunteers joined the TOIVO peer support app provided by OLKA . The app was piloted in 2021, and the aim is to expand marketing in 2022. Nationwide development of volunteer support for palliative care started with the SAAVA project, coordinated by the Finnish Palliative Care Association. The CSF the partner in this, and the pilot areas are the cancer societies of Northern Finland and Southwest Finland. The project aims to harmonise the training model and structures of volunteer activities in palliative care nationwide, increase the visibility of the activities and make them a more natural part of public health care. The annual seminar day for palliative care volunteers took place remotely in October, coordinated by the Cancer Society of North Savo. Family work. Training in the Let’s Talk about Children (LP) method and counselling was offered to new employees working with clients in member associations. The annual LP booster day was organised for LP method trainees of the CSF in cooperation with the Finnish Association for Mental Health’s Effective Child & Family Work team. In addition, a remote learning course on the LP method was offered to all CSF staff. Cooperation with the relationship counselling centre Kataja continued in the field of rehabilitation and volunteering. A rehabilitation seminar was offered to CSF professionals on the theme of relationship therapy and distance learning was also offered to volunteers. As a distance learning course in rehabilitation, the Emotions online distance learning model for children and young people was piloted for children aged 10-12 who have lost a parent to cancer, in collaboration with bereavement organisations. Financial support The The Cancer Foundation provides grants to cancer patients who face financial difficulties. Grants are awarded on application accompanied by a social worker’s report. The foundation’s support for low-income cancer patients is distributed through the CSF’s Social Committee. In 2021, a total of 1 576 people were granted grants (1 548 in 2020, 1 343 in 2019 and 1 186 in 2018). The total amount of grants distributed in 2021 was EUR 742 150 (total in 2020: EUR 728 320, total in 2019: EUR 657 700 and total in 2018: EUR 499 840), ranging from EUR 400 to EUR 1 000. The importance of assistance for families’ livelihoods has increased significantly in recent years as economic insecurity and deprivation have increased. The amount of grants will be increased in the future based on demand. At the same time, awareness on the part of target groups and social workers of this form of assistance and the conditions for receiving it will be strengthened. The application process will also be improved. The Cancer Foundation provides support to families with children with cancer through the Children’s Cancer Fund in memory of Emilia Heinonen and the Svea Ahlqvist Fund. A total of EUR 42 000 was awarded to 35 families.
