Anna Uzlova - Supporting Patients within Ukraine

Inspiration Family was started four years ago as three different organisations, and in September 2020, we joined our efforts as a charity foundation to support cancer patients throughout Ukraine. We lobby the government to provide more and better care; at least, that was our focus until the invasion started.

Those first few days after 24 February were chaotic. Nobody knew what was happening, or what we needed to do. We didn’t know what cancer centres were still open, and what treatments and operations were still offered. Which patients would need to relocate? And where? We were all in a fog. Our priority became collecting information and getting it out to patients in Ukraine.

We created our own hotline, that included a ‘Telegram’ app, Facebook pages and Instagram posts to keep patients updated. We also were available for personal chats and phone calls – with both patients and oncology physicians, and often linking both groups. By the end of July, we had answered about 1,500 questions.

In addition, we reached out to the Ukraine Ministry of Health to see what cancer drugs were needed, and whether we could help supply truck drivers to get the medications from the blocked warehouse to the functioning clinics and hospitals. In Ukraine, small organisations like ours, relying on volunteers, are usually faster and more flexible than working through the state bureaucracy. What was clear dealing with the government, however, was that cancer patients were not a high priority amid so much death and destruction.

For the first month or two, most questions came from patients moving abroad and in need of guidance on where and how they could continue their treatment. That meant collaborating with European organisations like Youth Cancer Europe which coordinated patients abroad, while we oversaw those patients who remained in Ukraine. Working with Netherlands for Ukraine we organised medical evacuations for two groups of Ukrainian cancer patients.

The requests to Inspiration Family were growing by the day, and it was often frustrating because we couldn't help everyone. Patients, for example, were asking for expensive treatments that we simply could not obtain. To handle the sheer volume of requests, we brought in additional volunteers, and their help was invaluable. At the same time, we tried to create a more disciplined structure so that specific questions were routed to designated experts or specific members of the staff. In retrospect, however, it was a mistake. We actually wasted time. You don’t create new systems in the chaos of war and in a constantly

changing environment. You don’t introduce new management tools. It doesn't work. You just must answer the requests you get as quickly and as best as you can.

Looking back now, I also think we were not as flexible as we should have been. We were too shy to try new initiatives. For example, we were approached by some groups to help raise money to buy new medications. We had never done that before and we worried it would lead to other such requests and a major distraction. I now think that fear was misplaced.

Not to make excuses, but as the war continued, we were all so very tired and not analysing things as we should have.

We were also not effective when we tried to organise everything for everyone. It meant we were too scattered. Instead, I think our real value was connecting Ukrainian cancer patients, once they were abroad, with the local support groups and international organisations. Many of these groups were new to us, but I think we have been effective in working with them. We also made sure to share these contacts with our Ministry of Health, helping to prepare them for their own evacuation of cancer patients two months later.

In retrospect, I am very proud of the support we were able to provide cancer patients remaining in Ukraine. It is gratifying to see how we are all more united today – with various international entities, our own health ministry, even local oncology doctors. It took us several months, but I think we have found our way forward to make a real difference in the lives of Ukrainian cancer patients.