“There are gaps in our social system”

An interview with Jeannette Tornare, affected mother and Secretary General of ARFEC

ARFEC, the Western Switzerland Association of Families with a Child with Cancer, was founded more than 35 years ago by parents with the aim of organising a network of affected people to help and support each other. Jeannette Tornare is the Secretary General of ARFEC and herself an affected mother. With her experience, she helps other parents to cope better with the difficult time during and after treatment.

Ms Tornare, when a child is diagnosed with cancer, it always affects the whole family. Can you tell us about the challenges those affected face?

Initially, the overriding factor is the family’s fear – fear for their child. But relatively quickly, parents start thinking about specific logistical and administrative challenges. These range from the reorganisation of their normal everyday life and childcare for siblings to professional and financial problems. When a child has cancer, it turns the affected family’s life upside down from one moment to the next. Virtually overnight, everything has to be completely reorganised. Many parents rightly ask themselves how they will be able to spin all the individual plates. Unfortunately, not all families can fall back on a personal network that can support and sustain them emotionally, and not all of them have the necessary resources to survive financially in the long term. And that is why help from outside is all the more important. As a self-help organisation, we are aware of the different needs and know from experience that empowered parents are better able to help their child through the difficult time of therapy.

 

Your daughter was diagnosed with cancer in 2010. What helped you as a family during this difficult time?

I was very lucky to have a very understanding employer and an environment that was very supportive of my family. This allowed me to flexibly adapt my working hours to my daughter’s state of health and at the same time clear my head for at least a few hours. That really helped me. As I was able to keep my part-time job and my husband continued to work full time, we were still able to make ends meet financially. We also received a lot of help from our personal environment. My neighbour was always willing to lend a hand with our other two children and my mother came to stay to take care of the housework. Thanks to this extensive support, we managed to get through the difficult time reasonably well. Based on my experience at ARFEC, however, I know that this is not a matter of course. There are plenty of parents whose employers show little or no understanding and who simply cannot count on a great deal of help from their social environment, whether relatives, friends or acquaintances. The situation can then escalate relatively quickly and the families affected need support as quickly and easily as possible.   

 

What can a social network do to take the pressure off affected families?

It’s often small things and gestures that count. For example, going shopping, preparing meals, doing the laundry, mowing the lawn and other such things. Or offering to look after the siblings as they suffer too and often get short shrift. Sometimes it is enough to simply have time to listen when things are particularly difficult and just be around in the long term. What helps those affected most are concrete offers of help and not open questions such as “What can I do?”. So the best idea is to think about what would make sense beforehand and approach the parents with this specific suggestion. Another issue for families is the school situation. Many worry that their child is losing touch with both their school work and their classmates. More online and hybrid lessons would help here and ensure that children affected by cancer suffer less from loneliness. And finally, there is still the question of reconciling care and work. More openness and a greater number of solutions with regard to more flexible working time models would make it possible to combine both care and work, and prevent families from having to struggle with the loss of their livelihood in addition to the fear of having a seriously ill child.

 

Your organisation also provides direct financial support. Why is that important?

Due to the illness, families are suddenly faced with additional costs that are usually not covered by social or invalidity insurance. Treatment can take anything from months to years and takes place in specialised children’s hospitals, which are usually a long way away from the families’ homes. During this time, parents are constantly commuting between the hospital and home, at least during the intensive care phase. Later, the child may be able to be cared for as an outpatient, but a sudden deterioration in their condition always means a return to hospital. Public transport is usually not an option because the children concerned are too unwell or their immune system is too weak. And younger siblings may also need to be looked after at home. This can quickly result in additional monthly costs of over CHF 2,000 for parking, meals and accommodation alone. These are large sums of money that can quickly result in a financial emergency for some families. We help where we can, but unfortunately our budgets are also limited.

 

What needs to change overall so that the families affected can get through this crisis better?

When a child is diagnosed with cancer, the parents not only have to cope with the illness itself, but also with the high additional costs. And that is really difficult for many of them. This is because while on the one hand costs are rising, on the other, the household income is falling. The fact that there is now access to 14 weeks of paid care leave is important and good. However, for families who are already juggling their budget, the compensation of 80 per cent of the average earned income is usually not enough. This means that the missing 20 per cent can quickly become a threat to their livelihood. Therapy for leukaemia, for example, can take anything up to two years. However, the law only allows parents of a seriously ill child 14 weeks of care leave. How can that possibly work? Unfortunately, there are gaps in our social system, which is why families with a child suffering from cancer are often left to fend for themselves. In Switzerland, it is private organisations, foundations and associations such as ARFEC that step in when the health or invalidity insurance does not pay. However, in order for families in need to receive support across the board, greater socio-political commitment on the part of the federal government is absolutely necessary.

 

ARFEC accompanies and supports families with a child suffering from cancer. What exactly does that mean?

For example, we provide direct financial support for illness-related expenses if parents are unable to cover them on their own. We organise leisure activities and breaks so that fathers, mothers, affected children and their siblings can take their minds off things and relax. And we are there for those affected whenever they need help and someone to just listen – whether during treatment, afterwards or, in the worst-case scenario, when a child dies. At ARFEC, parents can share their experiences with people who understand them, talk openly with each other, laugh together, sometimes even cry, and network with other families so that they no longer feel isolated and alone.