Ira: Please tell us about your medical career. What was the decisive factor that led you to palliative care?

Yulia: I graduated from the paediatric department of a medical university. While studying, I became interested in anesthesiology and resuscitation. In Kazakhstan, these two fields are combined into one specialty, although I mainly focus on resuscitation and intensive care. On graduating, I enrolled in a specialisation course in anesthesiology and resuscitation at the same university and afterward started working in the intensive care unit of a children's hospital.

In my work, I often collaborated with the hospital's neurologists and their patients, who occasionally ended up in the ICU. I had this feeling of lacking knowledge in the area, and three years later I decided to pursue an additional specialisation in neurology. During my two-year training, I learned a lot about neuromuscular diseases.

In 2017, parents of children with such diseases founded the Ömirge Sen foundation, and I immediately got acquainted with them. They brought in specialists to raise awareness of neuromuscular diseases in the country. I was interested in these patients, but I didn’t officially cooperate with the foundation at that time. I worked independently. From time to time, I encountered children with neuromuscular diseases, so I had my practice and focused on respiratory support for my patients.

Last December, I was invited to work for the foundation as a doctor, and later as the head of the Centre for Respiratory Support. At the same time, I receive many patients with severe organic CNS lesions, who, unfortunately, are often neglected: clinics don't want to deal with them, and they struggle in hospitals for extended periods, remaining in the ICU. It’s with such patients that I form close connections, mainly because they have nowhere else to turn. I now manage a small group of children, most of whom have neuromuscular diseases.

My goal now is to organise medical operations in the Centre and develop further from there. Though I understand that, in the bigger picture, we are primarily interested in comprehensive palliative care.

Ira: What is your current team structure?

Yulia: I am the head, and we have two doctors: one works remotely and another one works in-person, in the city of Shymkent. In Shymkent, we have a branch, and the doctor there sees patients two days a week. It's great, but she's handling over 100 patients, which is a lot. Recently, we also hired a full-time rehabilitation doctor, and we have an occupational therapist and a nurse who coordinates patients, performs respiratory diagnostics, and trains patients in Ambu-therapy. That’s our small team. We also have psychologists who frequently visit to consult both children and their families.

Ira: You often provide equipment for the patients, maintain connections with experts and partners from different countries. What established channels and partnerships do you have to obtain the resources necessary for the foundation’s work? What else keeps you going?

Yulia: Information support plays an incredibly important role. Natalia Nikolaevna Savva has helped us a lot with platforms and educational content, including materials from her academy. I frequently read the Pro-palliativ (about palliative care) portal as there are many useful publications about our patients.

I’m not deeply involved in funding; I mainly focus on medical issues. However, there are various companies and donors providing support.

The equipment issue is quite challenging. We provide ours for free rental. Since equipment is not included in the standard provisions, it's funded through donations. Beneficiaries may open a fundraiser themselves, or the foundation does it for them to secure the necessary equipment.

Our main goal now is to establish a preventive approach. Parents should understand that the moment they step into this, they need to think about respiratory equipment – in advance. Unfortunately, we don’t have the ability to supply everyone quickly. Moreover, people often start thinking about the need for respiratory equipment only in crisis situations. Very few families approach this issue proactively. It's sad because it’s extremely difficult, sometimes impossible, to adapt a child to a mask or a device during a crisis.

Ira: Is it true that Ömirge Sen is the only organisation in Kazakhstan today providing palliative care to children with neuromuscular diseases?

Yulia: It seems so. There are various government and private oncology institutions, but when it comes to neuromuscular diseases, yes, we are the only ones working comprehensively with such patients.

Ira: What does the educational infrastructure for palliative care specialists look like in Kazakhstan? Are there any opportunities for training professionals? Are there organisations in the country that invest in education or promote palliative care?

Yulia: It’s definitely a challenge because such a specialty as palliative care doctor simply does not exist in the official nomenclature. There are short courses, and there is advanced training in palliative care in some medical universities in Kazakhstan. That’s about it, as far as I know.

Today, if a doctor or other specialist in Kazakhstan decides to become a palliative care professional, it will be entirely their responsibility to seek out information sources, educational opportunities, and most importantly, people. Most of my training is based on people who introduced me to other professionals. They help me with education, courses, special events, and even everyday problems like finding equipment or specialists.

For example, I met many interesting people through Tanya Konovalova, who worked with us as the development director for some time. Through her, I got to know the Lighthouse Children's Hospice staff. I stay in touch with the palliative care department at the Speransky Hospital. I met Gulnara Kunirova at the roundtable on palliative care in Kazakhstan and now we frequently correspond. These connections form a growing network of useful contacts.

Ira: What are your development plans for the Centre? Let's pretend that resources are not an issue, what would you like to do?

Yulia: First and foremost, I’d like to have a facility where they understand what to do with my children – a palliative care ward or hospice that works with neuromuscular diseases and addresses surgical care issues. For example, getting a gastrostomy is a major problem right now: many patients need it, but there are no doctors to perform the procedure. It’s not just about the operations themselves; the whole process needs to be organised, from logistics to nutrition and equipment. It would be ideal to have a resource centre for my patients. The classic system: an outpatient part for consultations, an inpatient ward that can admit patients at any time, friendly surgical units, and mobile teams. I would also love to establish a preventive approach, ensuring resources are available in advance and not being sought in emergencies. And, of course, rehabilitation.

Another important issue is accessibility, which is a big problem in the post-Soviet space, including here. One of my patients, a grown boy with Duchenne muscular dystrophy, received an apartment in a new building. But there were no ramps or accessible features, so he ended up trapped in his apartment. It’s sad. We need to overcome this outdated belief that people with disabilities should stay locked away, looking out of their windows. They should also be able to go outside, travel, and swim in pools. That’s what I’d like to see.

Ira: Some of the things you mentioned are the responsibilities of the state. What do you think the Ömirge Sen Foundation and Centre can take on?

Yulia: Our funding is still very limited. If we had a facility for inpatient care and staff, we could organise something like the Lighthouse Children's Hospice in Moscow – a non-governmental hospice for our patients. We could base other services on that, including mobile units. It sounds like a great idea.

Ira: What advice would you give to your colleagues in palliative care? How do you stay motivated and manage all the new information?

Yulia: I’m still figuring it out, slowly adapting. My office whiteboard helps a lot – I write down absolutely all my plans on it; otherwise, I’d forget something.

My main motivation is "there’s always room for improvement," in any area, even when it comes to death. The dying process can also be made better, and we have the ability to do that. We need to change our attitude toward death, as it’s an outcome for all of us, and our task is to help a person go through this journey as comfortably as possible, without reflecting this experience onto ourselves. Nothing says that you’ll have the same end-of-life experience. So we just need to ensure that even in their last moments, people feel as good as possible.