Helping to build new patient organisations in Europe

Europa Uomo’s Prostate Cancer Patient Officer, based in Poland, is helping to build new prostate cancer patient organisations in Europe

Europa Uomo is supporting the growth new organisations for men with prostate cancer in Eastern and Central Europe – with the help of a young researcher and campaigner based in Warsaw. For the past 10 years, Izabella Pawlowska has helped with translation and administration for the Polish prostate cancer patients organisation, and in 2018 she began working with Europa Uomo to help build patient representation in other countries.

She has been working with Board member Stig Lindahl, making contact with prostate cancer patients in countries where there is currently no patient organisation, and offering support to existing organisations that need strengthening.

This is valuable work, says Stig: “By providing a number of good examples from existing organisations in other parts of Europe, we hope they can find a ‘menu’ that is suitable to the environment in their own country.”

Over the last year, Izabella has been working with men from Armenia, Latvia, Slovenia, Romania and Iceland as they attempt to develop support organisations. “Every country has different needs,” she says.

“In Latvia there is a very small organisation, run by just two people with hardly any resources. I’m showing them how things are organised in Poland and other countries. I visited them last year, and they’re now thinking of forming a coalition with five other patient organisations.”

Many of the organisations have no websites or public profile, so much of Izabella’s time is spent searching for contacts. Once contact is established, and a conversation started, Izabella provides information about how other organisations work, and advice on how to raise and find funds.

“The biggest challenges these organisations face is finding voluntary help, finding resources, and also reaching out to men with prostate cancer in smaller towns. In Latvia, for example, it’s proved very hard to move beyond Riga.”

There is a desperate need for such organisations to function well, and provide advice and support to men in their countries. “I think one of the biggest problems in Eastern and Central Europe is that men aren’t getting checked for prostate cancer,” she says. “Many men are worried about going to the doctor. I think campaigns like Movember are beginning to help, but there’s a need for much more awareness raising. There’s also the problem that in some countries the PSA test isn’t easily available. In some countries, like Armenia, it costs almost a month’s salary.”

It’s an uphill battle, but a worthwhile one. And on the positive side, Izabella Pawlowska believes that the language barrier is not what it was. Because of Google Translate, most online materials are easily translatable into every language. The Europa Uomo website can be translated at the push of the red button at the bottom of every page.

“It works,” she says. “It’s easy for everyone to go to the Europa Uomo website and choose their language. This is something I’m telling everyone about.”