Nezabutni, an innovative platform to help the most vulnerable Ukrainians amidst war
Irina, Natalie, how did this project start ?
Irina : After the war started in Ukraine our organization had to completely change our usual ongoing projects and react to the new urgent challenges caused by the war. As the situation developed we started adding new services like delivery of medications, help with evacuation, and online medical and psychological assistance. We communicated through a whole range of social media and messenger groups. We needed one single platform that could combine all the support we provide, making it easier for our beneficiaries to find and receive our help. MSF supported this idea. It is really important and exciting that we could act quickly and develop the project.
We would like this platform to become a place that combines all the useful information for people with dementia and elderly people during this time of war. There will be information about services provided by Nezabutni as well as by other organizations - in Ukraine and abroad. We are planning to constantly update this platform with useful information and services.
Natalie : I was in Ukraine in early March along with Miguel Palma, the MSF France mental health referent, and we first met Irina at an online working group meeting, where she started to explain the difficulties faced by people with dementia during the war. Unlike the representatives of the big international organisations, she didn’t use any jargon. She simply described the same situation Miguel and I had noted already during our explo in central Ukraine, and the same situation that MSF had encountered in the east of the country since 2015 - that although the attention of many international aid organisations was often focused on the wounded, in fact older and disabled people are particularly vulnerable during the conflict. Irina clearly had an in-depth understanding of the problem and of the Ukrainian response, the different actors, and the different initiatives, even only a few weeks into the war. She wasn’t allowed enough time to go into detail in that first meeting, and we were curious to find out more, so we contacted her to ask her to brainstorm together with us about how we could best offer assistance to this particular group of the population.
During that first discussion, I explained MSF’s operational orientations, with MSF teams planning to collaborate with Ukrainian medics, social workers and volunteers to provide assistance to older people at home and in nursing homes across the country. We also discussed how MSF might try to help older people who wanted to evacuate somewhere safer, but who would need extra support such as specialised transportation and accommodation to do so.
Irina then explained her idea for the Nezabutni United project, to bring together all the different initiatives already offered by Nezabutni and others on one easy-to-use digital platform, aimed at older people, people with dementia, and the people who care for them. This tool would be completely complementary with MSF’s activities in Ukraine - in fact, MSF activities could also be included on the platform. Ukraine is the ideal setting for this type of project - the country has been going through a digital transformation, so there are groups of highly skilled Ukrainian developers able to build this type of platform quickly. During the Covid lockdowns even older people had become familiar with having virtual medical consultations. And there was already a huge solidarity movement of volunteers in the country. It seemed so simple and obvious to put all these elements together, but to make the idea a reality Irina needed support - which was where The MSF Foundation came in. The project she proposed was just completely aligned with our approach at The Foundation, to develop new medical tools for the most vulnerable patients, and to complement the operations of MSF.
Tell us more on the situation of these vulnerable people in Ukraine ?
Irina : Though Ukraine had been warned of the high possibility of the military invasion, nobody could really believe it could actually happen. Thus many people were not prepared - they found themselves at home without essential medications. At first pharmacies were closed, online deliveries did not work. So our volunteers started to search for the needed medications in pharmacies all over Ukraine and to deliver them to people.
All our beneficiaries confirmed that the physical and mental state of people with dementia worsened during this time. Constant loud sirens and sounds of explosions, curfews that could last days affected the situation. Families with persons with dementia faced great difficulties reaching a bomb shelter and staying in it (usually the first time was also the last time), and it was (and still is) even difficult to move a bed at home into a safer place, away from the windows for example. People with dementia need routine and they lost it. Some people became aggressive, some stopped to recognize their relatives or developed other distressing symptoms. And their family could not physically get to the doctor and receive advice - so instead we launched free online consultations with a psychiatrist, as well as group and individual sessions with psychologists.
I estimate that around 30% of our beneficiaries made the decision to flee with a person with dementia. These were extremely difficult trips (sometimes spending more than 48 hours in a car or 8 hours standing in a line for a train) with no special arrangements made for vulnerable people. This was also a very distressing experience.
After more than 2 months of war the need of evacuation for older and disabled people to safer places inside or outside Ukraine is still one the main requests we receive.
In general even in peaceful times, people with dementia did not have an adequate level of support in Ukraine (dementia is not well diagnosed in Ukraine, and there is no National Action Plan). According to our evaluations there are around 500 000 people who live with dementia in Ukraine.
I am extremely grateful that The MSF Foundation provides support to such a vulnerable group of people, especially during this hardest ever time for our nation.
Natalie : I spent a lot of time in the region south and west of Kyiv. At that time Russian troops were occupying towns like Bucha and Borodyanka, so we couldn’t access them. However, I managed to visit hospitals near the frontlines in the areas where there were some elderly patients that the Ukrainian forces had managed to evacuate from the occupied areas. Some were wounded, but most were suffering from complications of chronic diseases. They explained that they had been unable to flee when the Russians came, and so had found themselves stuck in their home or in a basement, surrounded by extreme violence, in freezing temperatures with the electricity, gas and water cut off, and with no access to care. Although they were lucky to have escaped that situation, it was unclear to me what would be the future for these people who were now too frail to return to live at home alone, and anyway, their houses had often been damaged or destroyed, as had their local hospitals and health facilities.
I also met with social workers and visited nursing homes across the region. The most impressive, but also the most upsetting, were those nearest the frontlines. Half the population in these areas had fled, but the elderly had often been left behind, usually because mobility problems left them housebound, bedbound, or dependent on nursing care. Social workers had stayed behind to look after them despite all the difficulties they faced - bombing, curfews, and problems in finding fuel, medicines and other basic supplies. Most pharmacies were closed, and the few that were open had very limited supplies. The social workers were having to use bicycles to search for medicines, in between air raid sirens and curfews. To make the situation worse, at the time everyone was convinced that the Russian frontlines could advance further, so they would soon find themselves in the same situation as the people of Bucha: trapped in their basements, surrounded by violence. Yet there was no realistic ‘Plan B’ - no safe way to evacuate these vulnerable people, who even if they survived the journey, would not be able to survive sharing a crowded shelter with hundreds of other displaced people sleeping on camp beds.
Although the Russian troops have now left that area of Kyiv, the situation remains precarious. Meanwhile the situation for older people and their carers in the east of Ukraine is increasingly desperate.
What are the next steps, the main challenges for the next few months ?
Irina : As we anticipate the rise of demands from beneficiaries, the main task for Nezabutni for now is to make sure we can cover all the requests. Another focus for us is to continue adding all the possible useful information - especially for the access to medication abroad. There are a lot of ideas of services that could be added on the platform later, but for now we would like to make sure that the current platform is really working smoothly and effectively!
Natalie : This project is at once classic and unusual for The MSF Foundation. Classic in that it completely aligns with our approach, but unusual in that it was developed with such rapidity and was in many ways opportunistic. I think it was really a case of being in the right place at the right time, as well as the luck of being at that first online meeting, where Irina had such a clear voice and idea, and Miguel and I were interested in listening to her. Now the platform has been launched we’ll keep discussing with Irina and following the context. As the situation develops in Ukraine, as well as the humanitarian response, the platform will evolve accordingly. We need to keep a close eye on demand, in case we need to automatise certain functions - we hope it will be that successful in fact !
Irina : It is an honor for us to work with MSF Foundations and professionals of such level. We are grateful for the trust and all the support. I also admire the bravery of MSF people who came to Ukraine during the active military action and the level of detail they dive into when investigating any question. I would like to thank you on behalf of the families with people with dementia and elderly people for your work and support in Ukraine.
Thanks to the Nezabutni UNITED project many more Ukrainian people will receive support!
Irina Shevchenko, Founder and director of "Nezabutni" charitable foundation, and Natalie Roberts, Program Manager at The MSF Foundation and Director of Studies at the Crash who went to Ukraine as emergency coordinator, talk about this project.