The CSF promotes a good quality of life for patients and their loved ones despite cancer

Strengthening the knowledge base

The Finnish Cancer Registry continued to strengthen its knowledge base by text mining reports submitted to the registry (pathology, clinical and treatment reports). Gleason scores, which are central to prostate cancer treatment, were included in data transfers. The inclusion of staging data (TNM) mined using an algorithm in data production continued.

The Cancer Registry expanded its database to enable the construction of individual-level follow-up data on cancer patients for the Cancer Quality Registry research project. A steering group was established for the project. The first outline report on the quality of lung cancer treatment in Finland was published.

Luoto service

Luoto discussion support. In the CSF’s Luoto service, social and health care professionals provide psychosocial discussion support to cancer patients, their loved ones and anyone concerned about cancer. One can access the Luoto service prior to becoming ill, at different stages of the treatment pathway, after treatment has ended, or after a loved one has died from cancer.

In 2024, Luoto professionals at the central office met with a total of 3,374 clients. They contacted Luoto by phone, email, chat, or face-to-face via Teams. Support was provided in Finnish and English. Swedish-speaking clients were referred to the Cancer Society of Ostrobothnia.

Benefit counselling. The benefits counselling service provides information to cancer patients and their loved ones on social security, social services, and income-related matters. The service can be contacted by phone or email. It is provided by four licensed health social workers from the Helsinki and Uusimaa Hospital District and the Pirkanmaa wellbeing services county. In 2024, there were 134 contacts. Most of them were related to questions about what benefits and services cancer patients and their loved ones are entitled to and where they can get support for their financial situation.

Cancer Pain Helpline. This service is intended for cancer patients, their loved ones, and healthcare professionals. The Cancer Pain Helpline provides information and support on matters related to pain management. The service is provided in collaboration with specialist nurses and doctors at the Helsinki University Hospital’s Pain Clinic. In 2024, there were a total of 13 contacts. The main reason for calling was inadequate pain medication.

Genetic counselling. The purpose of genetic counselling is to provide information and support to people who are concerned about the hereditary risk of cancer. The need for counselling is increasing in line with developments in genetic research, personalised medicine and increased awareness of heredity. In 2024, a total of 126 people underwent hereditary screening. A genetic counsellor assessed the risk of hereditary cancer in 87 people. Of these, 40 were referred to specialist healthcare for a more detailed assessment of their hereditary risk.

Two courses were organised in 2024. One was for people carrying BRCA1 or BRCA2 gene mutations and the other was for people with CDH1 gene mutations.

In addition, the development of uniform content for hereditary counselling continued, and the service was also offered to customers face-to-face via Teams. Internal training was organised for the staff of cancer organisations.

Network collaboration. The CSF participates in PuhEet, the advisory board for ethical guidelines regarding voluntary telephone and online help, the drug treatment network working group of the Finnish Medicine’s Agency (Fimea), iCAN’s Patient and Citizen Advisory Board (POTKU), and the Finnish Association for Children and Young People with Cancer (Sylva). We also worked closely with FICAN.

Services for families

Family work network. In 2024, a family work network was established with the aim of strengthening family work expertise in the CSF. The network organises two theme days related to families each year, maintains the Lapset puheeksi (Let’s Talk About Children) work, and develops Hyvä arki lapselle (Good Everyday Life for Children) activities.

Cooperation with the Kataja relationship counselling centre continued in the development of the peer group model called “Building Blocks of a Relationship”.

Rehabilitation support

General. Two out of three people diagnosed with cancer recover, and an increasing number of cancer patients live with chronic illness for years or even decades. As a result of good treatment outcomes, the need for rehabilitation support for cancer patients increases immediately after diagnosis, during cancer treatment, and after treatment has ended.

Aims. The rehabilitation support provided by the CSF promotes and maintains the functional and working capacity and well-being of cancer patients, which are basic prerequisites for a good life. Our organisation provides timely rehabilitation support and responds better than ever to the support needs of clients at different stages of their illness. The rehabilitation support we offer complements public rehabilitation services.

Courses. The CSF offers courses for cancer patients and their loved ones, as well as for gene mutation carriers. The courses are thematic, goal-oriented and professionally led group courses. They are funded by STEA grants and self-funding. The courses are conducted both face-to-face and via video links. The courses are organised in 3–5-day periods at rehabilitation centres or in open rehabilitation periods lasting several weeks. The courses provide information and strengthen participants’ skills, resources and coping strategies, as well as supporting them in coping with their illness in everyday life. The courses also enable professionally guided peer support.

A total of 51 courses were held in 2024. There were a total of 1,025 applicants and 580 participants. Individual, couple and family courses were available, which were implemented as thematic or activity-based courses. The courses were held at rehabilitation centres as intensive courses, open courses, online courses, and combination courses. Of those who participated in the courses, 78% were women/girls, 20% were men/boys, and 2% were others. Of the participants, 70% were cancer patients and 30% were relatives of cancer patients. Feedback was provided by 79% of the participants. They rated the usefulness of the courses on a scale of 1 to 5, with 4.5 being the highest.

Development. Matters related to rehabilitation support and course activities were developed within the CSF and in collaboration with other organisations, regional cancer centres and other public health care providers. An online course promoting health and well-being was piloted with seven clients and received excellent feedback. A workbook for cancer patients was produced in collaboration with member associations. It aims to help patients deal with their own well-being and lifestyle changes in a resource-oriented manner. The workbook is intended to be used with a professional in both course and individual work.

Network cooperation. The CSF is actively involved in the rehabilitation network (KUVE) coordinated by SOSTE, the course development network (KUTO), and the outpatient rehabilitation network and its peer development group coordinated by the Finnish Bone Society.

The psychosocial support steering group is a group of experts composed of representatives from member associations of CSF, which guides, develops, and coordinates the organisation’s psychosocial support services.

Training day for experts in health promotion and psychosocial support at the CSF. The themes of the two-day training day were lifestyles and self-compassion as a support for well-being.

Volunteer and support person activities

Development of volunteer activity. The CSF’s volunteer survey project was completed in 2024. It was carried out in collaboration with five member associations. The revised survey provides valuable information on volunteers’ views and suggestions for development. The CSF Volunteer Work Handbook was also revised in 2024.

Management training. Study circles were organised on the Volunteer Work Handbook. In addition, a lecture supporting the management of volunteer activities, a national seminar, and numerous remote morning coffee sessions were held.

Volunteer survey. In 2024, a revised national survey was conducted among CSF volunteers. A total of 566 people responded to the survey. A total of 4,700 people were involved in various volunteer tasks at the CSF.

Figure 3. Volunteering numbers in 2024

 

Experts by experience. The CSF held basic training for experts by experience as on-site training. Basic and advanced training was conducted online in collaboration with the national Experts by Experience Network. All CSF experts by experience are trained sharers of experiential knowledge. Their task is to increase the understanding of cancer among professionals and students across different fields.

Supplementary training for volunteers Two webinars were offered to volunteers at  the CSF. They explored positive psychology in volunteer work and whether cancer can be prevented. A total of 600 people participated in the training.

Support person activities are a main form of volunteer work in. The support person development group is responsible for developing these activities. In 2024, the group promoted the updating of support person activity titles and guides, among other things.

Statistics. In 2024, a total of 1,170 peer supporters, peer counsellors, and palliative care support persons worked in the CSF. Of these, 642 were peer supporters, 337 were palliative care support persons, and 191 were peer counsellors. About 3,900 clients received support, and there were around 12,000 encounters. There were 127 different groups led by peer counsellors. Peer groups met a total of 1,027 times during the year, and there were 8,565 visits to the groups.

Training. Peda.net provided two peer support training courses and one peer mentor training course. CSF staff were trained to use support person activity surveys. A total of 96 people participated in peer support training, 109 in palliative care support person training, and 60 in peer mentor training. A total of 555 people participated in continuing education courses.

Activity guidance/work guidance. Support persons were provided with activity guidance, where they received support for their own coping and functioning alongside people with cancer or their loved ones. Group activity or work guidance was organised 229 times. Activity or work supervision sessions were attended 1,388 times.

Development and network collaboration. In 2024, the Support Person Activity Evaluation and Indicators project was completed, which produced, among other things, a feedback survey for those who had received support. In addition, the support person activity guides were updated, and a training day for palliative care support persons was organised. The event was held in collaboration with the Terho Home Palliative Care Foundation, the Church Council, and OLKA. The CSF also participated in the Grief Conference.

OLKA cooperation. At the end of 2024, ten associations belonging to the CSF were participating in OLKA’s TOIVO peer support application.

The national SAAVA project for voluntary end-of-life care ended in spring 2024. The project was coordinated by the Finnish Palliative Care Association, and several CSF organisations were involved. The CSF adopted various outputs and training models developed in the project.

Financial assistance for low-income cancer patients and low-income families with a child suffering from cancer

Cancer Foundation Finland grants financial assistance to low-income cancer patients. Assistance is granted on the basis of an application in which a social worker or social counsellor presents the reasons for granting the assistance. The Foundation’s support for low-income cancer patients is distributed through the Social Committee of the Finnish Cancer Society. The grants ranged from €400 to €1,000.

Changes made by the wellbeing services counties have made it more difficult for patients to access health and social work services, which is reflected in the number of applicants, but also in the number of contacts received by grant application processors requesting advice on applying for grants. The electronic grant application form introduced in 2023 has sped up the processing of applications and the receipt of grants.

Figure 4: Total number of beneficiaries of grants for adults and total amount of grants paid (in euros) from 2020 to 2024

Families facing financial difficulties due to their child having cancer received financial support. In 2024, the Svea Ahlqvist Fund granted a total of €45,600 in grants to 38 families (in 2023, a total of €36,000 to 30 families; in 2022, a total of €48,000 to 40 families). The purpose of the fund is to provide grants to children with cancer and their families. A total of €581,840 in financial assistance was provided to low-income families with children suffering from cancer and families facing financial difficulties due to their child’s cancer.