Eins unserer Highlights im Jahr 2024
Seit 2002 bringt die Association of European Cancer Leagues (ECL) Expert*innen für die Krebsbehandlung zusammen, die sich mit Themen wie Zugang zu Versicherungen und Finanzdienstleistungen, Rückkehr an den Arbeitsplatz, Unterstützung für pflegende Angehörige und Rehabilitation befassen. Die Mitglieder schärfen das öffentliche Bewusstsein für relevante Anliegen Krebsüberlebender und stärken so die Stimme der Patient*innen bei der nationalen und europäischen Politikgestaltung.
Im Frühjahr stand das Thema Rückkehr an den Arbeitsplatz nach/mit Krebserkrankung an und zum 1. Mai wurde eine Kampagne gelauncht. Wusstet Ihr: europaweit erkranken 1,6 Millionen Europäer*innen im erwerbsfähigen Alter jedes Jahr an Krebs.
Wir wurden für die deutsche Perspektive angefragt und haben gerne die Gelegenheit genutzt, in einem ausführlichen Interview und einer Video-Botschaft unsere gesammelten Erfahrungen und Insights zu teilen. Sabine stand als stellvertretende Vorsitzende Rede und Antwort und hat uns sehr fundiert repräsentiert. Well done, liebe Sabine!
Hier das Interview im Original:
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How does a cancer diagnosis affect patients’ work and career, in both the short and long term?
A cancer diagnosis can affect a patient’s work and career in many ways. During treatment, the patient may be unable to work for months or even years, depending on the diagnosis and course of treatment.
In the short term, a cancer survivor’s career is often put on hold, as they need to take time for recovery and rehabilitation. In the long term, many cancer survivors go through a period of reorientation—for example, finding a new employer, reducing their working hours, retraining, or moving to self-employment.
A cancer diagnosis can also mark the end of a patient’s career—for example, due to fatigue after cancer. In Germany, one third of cancer survivors do not find their way back to work. Although Germany has a well-established welfare system, many young cancer survivors who depend on state benefits live under the poverty line.
What can employers do to practically and emotionally support their employee(s) diagnosed with cancer?
Employers should be aware of their duty of care for their employees and try to anticipate the challenges ahead. They need to be aware of the short- and long-term effects of cancer—which admittedly is no easy task since medical research still lacks focus on long-term side effects.
It goes without saying that employers should be careful not to put any pressure on their employees during their medical treatment and reintegration. It’s a good idea to keep in (written) contact with employees on a monthly or quarterly basis without expecting any feedback on medical outcomes or prospects.
Employers should make sure they are up to date on their legal obligations—for example, offering a phased return to the workplace (see question 3). A mutual agreement between employer and employee on the conditions of the phased return that reflects the employee’s changed and evolving work ability and capacity is highly recommended. This agreement should be regularly evaluated and adapted as required. The employee’s job description may also need to be adjusted to the new situation—for example, reducing the number of business trips. A tandem partner and/or a designated contact person as well as a communication strategy is also desirable (see questions 4 and 6).
Some employers are able to fill the financial gap between sick pay and the regular salary for a certain period of time. This financial support prevents cancer patients with low salaries slipping into the poverty trap.
What are the legal protections put in place in your country/region to support cancer patients and survivors in the workplace?
In Germany, there are legal obligations on the reintegration of employees after a period of absence owing to illness of longer than six weeks. The employer is obliged to inform the employee about the option of return-to-work management (“Betriebliches Eingliederungsmanagement” / BEM; §167 Neuntes Sozialgesetzbuch). The goal of this process is to identify and mutually agree on supportive measures to restore the employee’s ability to work, at least to a certain degree. This process is voluntary for the employee and requires their consent. The employee can involve someone they trust in the process.
The result of such a BEM process varies depending on the circumstances. Often, participants agree on a time schedule for the employee’s phased return within what’s known as the “Hamburger Model”. For example, a returnee may start working 2 or 3 hours per day and gradually increase their working hours until they are back to their full capacity after 6 to 8 weeks (in most cases) or up to a maximum of 6 months. Other measures include adjustments to the returnee’s working conditions (e.g., more opportunity to work from home and to take breaks) and moving to other tasks or roles within the company.
However, experience has shown that many employers fail to offer their employees this structured BEM process as they are not aware of their legal obligations.
Cancer patients and survivors can also apply for disability status. This status affords some additional rights with respect to the design and organisation of the workplace, as well as five additional holiday days, tax relief, and stricter protection against dismissal.
What workplace policy changes can be made to support cancer patients and survivors in the workplace?
Work arrangements like working from home and flexible working hours help cancer survivors to accommodate medical appointments and to manage fatigue and other side-effects of treatment. Reasonable accommodations such as relaxation rooms for breaks and a calm working environment can help cancer survivors get back to work.
Creating an open and safe environment for communication is essential. Asking for help should be a sign of strength, not weakness. An ongoing exchange of information on how the cancer survivor and their colleagues are coping makes it possible to readjust the workload and expectations as necessary, and strengthens team spirit and motivation.
Offering colleagues the opportunity to ask questions about the illness, therapy, and new challenges might ease the atmosphere.
Large companies could facilitate support groups, enabling cancer survivors to connect with others who have gone through a similar experience and to share advice, coping strategies, and encouragement.
What are the national/European policy changes that can be implemented to support employers who want to improve the position of cancer patients/survivors at the workplace?
Re-skilling and up-skilling programmes funded by the European Social Fund Plus could help employees re-join the workplace.
National legislation should prohibit dismissals or redundancies during therapy and after one year end of therapy.
Employers should be given information on late and long-term effects of treatment, psychological distress, and the benefits of both counselling and exchange with other cancer survivors in the workplace.
Part-time sick leave as practised in Switzerland would take into account that many of those on full-time sick leave in fact work several hours a day/week, leading to more security and regulation.
A special European prize could be awarded to employers who protect and promote the rights of employees with disabilities and take measures to improve their security and well-being at work.
What kind of support do cancer patients/survivors need at their workplace?
We believe there are several ways to support cancer patients and survivors at the workplace. For example, returnees could be allocated a tandem partner—a colleague who explains new rules and developments, can help manage tasks, and step in when the returnee feels overwhelmed or needs a break.
A good communication strategy (disclosure decisions) is also essential: It is important to define who tells what to whom (so that the returnee does not feel exposed or overwhelmed by their illness), and to offer the possibility for the returnee to give a talk about their personal experience, with room for questions. In order to create an atmosphere of trust and belonging, it is important not to shame and blame, but to be mindful and collaborative, helping the person to feel reintegrated after a diagnosis or treatment.
Some more practical implementations such as space for recreation/rest/breaks and flexible working hours should also be considered.
What kind of resources are available to cancer patients/survivors to support them with the return to work?
A rehabilitation course lasting 3 to 4 weeks is usually financed by the health or pension insurance, in some cases a second rehab stay is also possible. A phased return to work within the “Hamburg Model” (see question 3) is usually financed by the health insurance company. As a result of the mandatory reintegration process (“Betriebliches Eingliederungsmanagement” / BEM; see question 3) the employer may agree to finance special equipment to adapt the workplace to the needs of the employee.
It is only in the last decade that training programmes, events, and counselling for cancer survivors returning to the workplace have been established. In Berlin, the initiative Leben nach Krebs! e.V. (Life Beyond Cancer!) pioneered workshops on legal, mental, and social aspects in cooperation with the consultancy KOBRA. A few years later, the Deutsche Krebsgesellschaft followed suit with similar events. However, these kinds of services are still the exception in Germany.
What further resources should be made available for other groups?
Unemployed and self-employed cancer survivors face particular challenges. There is no one-stop shop in Germany offering information on legal rights and whom to contact. It takes a great deal of time and energy to access the necessary information. Many self-employed cancer survivors face financial significant insecurities.
Parents of young children also face specific challenges. Seeing a parent suffer or being separated from them during cancer treatment, surgery, rehabilitation can be traumatic for children. Luckily, some institutions in Germany offer valuable counselling for parents with cancer and their children (e.g., Berliner Krebsgesellschaft).
How can mental health cancer experts/mental health professionals support cancer patients and survivors in the workplace?
Many survivors need time for reorientation and a boost in self-confidence and self-efficacy after completing treatment. Some may need to adjust their expectations of their own productivity to a new (lower) level. The waiting times for psycho-oncological counselling should be reasonably short. Exchange with other cancer survivors is crucial for helping survivors to accept the new situation and learn to cope with it.
How can family members/caretakers of cancer patients be supported in the workplace?
Who takes care of those who take care of us? This is a question that often goes unasked, especially in the workplace. Family members and caregivers of cancer patients should be given the opportunity to reduce their working hours and be given more time to complete their tasks. Employees should take into account that caregivers may need to be absent more often due to doctor’s appointments or caregiving responsibilities at home, which they should be able to do without feeling shame or pressure at work.
