On July 20, 2023, a webinar titled "How to Launch a Respiratory Support and Palliative Care Competence Centre within a Nonprofit Organisation — The Experience of Kazakhstan" took place on the PACED platform.
During this event, our colleagues from Kazakhstan shared the story of creating the Centre, which began with a meeting between pediatric palliative care specialist Natalya Savva and co-founder of the public foundation "Өмірге сен" Sabila Shugelova.
Their idea became a full-fledged patient service, providing comprehensive assistance to children with neuromuscular diseases in just a few months. On June 1, 2022, the Competence Centre opened its doors to the first patients, and today, its specialists assist more than 500 patients.
Gulnara Kunirova — President of the Kazakhstan Palliative Care Association, Chief Specialist of the Ministry of Health of the Republic of Kazakhstan in Palliative Care.
Data collection is underway in Kazakhstan on children needing assistance and the resources available to organise this process. In 2022, a roadmap was adopted, with one of its main tasks being the creation of a registry of palliative care patients. A roadmap for pediatric palliative care was also adopted, which involves activities to create a registry and assess the current resource base.
At present, Kazakhstan has about 5,000 children in need of palliative care. Equipped beds in hospitals total only 64 and are scattered across the country. Typically, these are beds in the intensive care units of children's hospitals. The only department specialising in providing palliative care to children operates in the hospital in Shymkent and has only ten beds.
It is premature to speak about the systematic and comprehensive provision of palliative care. Specialised mobile teams still need to be operational, while local pediatricians and nurses need to be able to provide home care.
This year (2023), we have started preparing a regulatory framework for organizing home care. Such assistance is only available to adult patients in clinical group 4.
According to the Ministry of Health of the Republic of Kazakhstan, in 2021, 365 children received palliative care, and in 2022 — 692. Thus, only 7% of the children in need were covered by palliative measures.
There is no separate standard for pediatric palliative care; it is described in the general standard section. Also, specific clinical protocols still need to be developed. The development of these documents is included in the list of priority areas for the following year.
Currently, the palliative field faces a severe shortage of trained medical personnel, and the system for providing specialised nutrition and consumables at home still needs to be fixed. Under these circumstances, non-governmental organisations play a crucial role in closing the gaps in the palliative care system for children. For example, the "Healthy Asia" Foundation established in 2009 the only hospice in Kazakhstan, "I Am with You," which provides outreach services. The "Omіrge sen" Foundation assists more than 500 children with neuromuscular diseases. The Palliative Care Association supports existing initiatives and explores the trends in the development of palliative care in Kazakhstan. The "Amila" Foundation provides psychological and pedagogical support to children with oncology and their families.
According to the study "Assessment of Doctors' attitudes toward palliative care" conducted by the World Health Organisation in Kazakhstan, 75% of doctors do not have access to consultations on palliative care in their practice; 72% noted the unavailability of consultations on palliative care when they are needed; 38% believe that palliative care is engaged too late in their standard medical practice. About 80% of doctors reported the unavailability of palliative care for children. In comparison, 70% believe that palliative support reduces the child's suffering, and 68% assume that the integration of palliative measures into the treatment course should occur earlier than it is practiced now.
The lack of opportunities for organising home care, limited access to specialised palliative care, and family resistance are the most severe obstacles to providing palliative care to children. However, doctors are highly motivated to acquire broader and deeper knowledge and integrate palliative care into the healthcare system.
During this event, our colleagues from Kazakhstan shared the story of creating the Centre, which began with a meeting between pediatric palliative care specialist Natalya Savva and co-founder of the public foundation "Өмірге сен" Sabila Shugelova.
Their idea became a full-fledged patient service, providing comprehensive assistance to children with neuromuscular diseases in just a few months. On June 1, 2022, the Competence Centre opened its doors to the first patients, and today, its specialists assist more than 500 patients.
Gulnara Kunirova — President of the Kazakhstan Palliative Care Association, Chief Specialist of the Ministry of Health of the Republic of Kazakhstan in Palliative Care.
Data collection is underway in Kazakhstan on children needing assistance and the resources available to organise this process. In 2022, a roadmap was adopted, with one of its main tasks being the creation of a registry of palliative care patients. A roadmap for pediatric palliative care was also adopted, which involves activities to create a registry and assess the current resource base.
At present, Kazakhstan has about 5,000 children in need of palliative care. Equipped beds in hospitals total only 64 and are scattered across the country. Typically, these are beds in the intensive care units of children's hospitals. The only department specialising in providing palliative care to children operates in the hospital in Shymkent and has only ten beds.
It is premature to speak about the systematic and comprehensive provision of palliative care. Specialised mobile teams still need to be operational, while local pediatricians and nurses need to be able to provide home care.
This year (2023), we have started preparing a regulatory framework for organizing home care. Such assistance is only available to adult patients in clinical group 4.
According to the Ministry of Health of the Republic of Kazakhstan, in 2021, 365 children received palliative care, and in 2022 — 692. Thus, only 7% of the children in need were covered by palliative measures.
There is no separate standard for pediatric palliative care; it is described in the general standard section. Also, specific clinical protocols still need to be developed. The development of these documents is included in the list of priority areas for the following year.
Currently, the palliative field faces a severe shortage of trained medical personnel, and the system for providing specialised nutrition and consumables at home still needs to be fixed. Under these circumstances, non-governmental organisations play a crucial role in closing the gaps in the palliative care system for children. For example, the "Healthy Asia" Foundation established in 2009 the only hospice in Kazakhstan, "I Am with You," which provides outreach services. The "Omіrge sen" Foundation assists more than 500 children with neuromuscular diseases. The Palliative Care Association supports existing initiatives and explores the trends in the development of palliative care in Kazakhstan. The "Amila" Foundation provides psychological and pedagogical support to children with oncology and their families.
According to the study "Assessment of Doctors' attitudes toward palliative care" conducted by the World Health Organisation in Kazakhstan, 75% of doctors do not have access to consultations on palliative care in their practice; 72% noted the unavailability of consultations on palliative care when they are needed; 38% believe that palliative care is engaged too late in their standard medical practice. About 80% of doctors reported the unavailability of palliative care for children. In comparison, 70% believe that palliative support reduces the child's suffering, and 68% assume that the integration of palliative measures into the treatment course should occur earlier than it is practiced now.
The lack of opportunities for organising home care, limited access to specialised palliative care, and family resistance are the most severe obstacles to providing palliative care to children. However, doctors are highly motivated to acquire broader and deeper knowledge and integrate palliative care into the healthcare system.
Sabila Shugelova — Co-founder and Director of the public foundation 'Өмірге сен' ('Believe in Life')
The public foundation 'Өмірге сен' specialises on children with neuromuscular diseases. The total number of Foundation’s patients is 530 people. Over 450 of them are children, and the rest are young adults. We can estimate the number of patients who will need assistance on these grounds based on the statistics of rare diseases.
Patients with neuromuscular diseases up to a certain age are not considered as needing palliative care. However, our Foundation provides respiratory and palliative support to such patients when necessary.
The Foundation's backbone is active parents. This allows us to have about 20 representatives among them in different regions of the country. United by a common goal and understanding of the situation, we meet with local authorities and monitor the situation in various parts of the country.
The Foundation has existed for over five years, and the first step was organising training for a wide range of doctors with the involvement of experienced specialists from different countries.
The Foundation also raises funds to purchase equipment, consumables, specialised nutrition, and home care. A logical extension of the Foundation's activities was the opening of the Respiratory Support and Palliative Care Competence Centre on June 1, 2022.
Natalya Savva — Ph.D., Associate Professor, Expert at the Respiratory Support and Palliative Care Competence Centre of the 'Өмірге сен' Foundation
The story of creating the Centre began with a meeting with the 'Өмірге сен' Foundation. The Foundation is based on active parents interested in solving daily tasks and issues, such as providing specialised medications and systematising this assistance and support.
This is how the idea of creating the Competence Centre was born, which went from concept to implementation in just three months. Based on conducted research and finding like-minded individuals, we formed an excellent team, prepared an application, and secured funding. On Children's Day — June 1, 2022 — the Centre opened its doors.
These three months were filled with active activities — we found an excellent location in the centre of Almaty; the landlord embraced our mission and adapted it for children in wheelchairs; we searched for experts and doctors who would teach our future attendees everything they needed. We planned to start training for parents, doctors, and medical staff, and we did — in July 2022, we held the first School and then conducted them on a monthly basis in different regions of Kazakhstan. The two main themes of the School were nutrition and respiratory support. Individual training and counseling for patients and their families also started. We went further and obtained permission to conduct medical procedures. Now, examinations take place at the Centre — both in-person and online — and the Centre's beneficiaries receive appointments and support in their implementation. Currently, you can get consultations from a neurologist and a resuscitator at the Centre. Selecting doctors was a separate challenging task. Unfortunately, there are few experienced specialists in palliative care. In our selection, we relied on medical professionalism, empathy, the ability to work with children with neuromuscular diseases, and the willingness to learn and acquire new knowledge. We were fortunate, and now our team consists of like-minded individuals capable of solving almost any task. Moreover, our doctors and nurses now educate their colleagues, telling them about approaches to palliative care that sometimes differ significantly from standard medical decisions.
A separate project funded within the Centre was the organisation of psychologists' work with parents of patients and teenagers.
We have plans to open similar centers in other regions of the country. Currently, we organise field consultations for patients and deliver equipment to them, but only some things can be brought — we need to develop centers in the regions.
You can start a centre like this with your brains and like-minded individuals. Gradually developing your activities, you will go from informing and educating to consulting and providing medical assistance. Starting the Centre from educational activities is the right approach.
In our Centre, we first acquired equipment for online education and consultations, then we bought unique equipment for examinations (not found elsewhere in Kazakhstan). We solved the issue of rehabilitation funding in Kazakhstan by adapting used items to new owners — this made the rehabilitation process continuous while waiting for individual units. Toys and non-hospital interiors was our joint effort with parents.
The fundraising process never stops — we write applications, communicate with potential donors, and tell them about the problems of children with neuromuscular diseases and our approaches to solving them.
A comprehensive approach to organising activities, informing and involving both local authorities and medical officials, allows for a change in the country's palliative care system. It is a lengthy process, but the most important thing is to start the movement.
Nurbek Bakhytov — Anesthesiologist-Intensive Care Specialist at the Respiratory Support and Palliative Care Competence Centre of the 'Өмірге сен' Foundation
At first, it was challenging for me to adjust. Working with children with neuromuscular diseases differed in approaches and methods from my familiar medical practice. However, I was eager to help children and devoted much time to training and studying this new medical field. Now, I am confident not only in medical work but also in sharing knowledge with other specialists and parents of children. I consult parents on respiratory and nutritional support, palliative care, nursing care, pre-hospital care during crises, and the use of medical devices at home, and I am a speaker at the Schools.
Shyryn Amantaeva — Nurse at the Respiratory Support and Palliative Care Competence Centreof the 'Өмірге сен' Foundation
My responsibility is to organise consultations for patients — we conduct them in-person and online. An individual consultation lasts 1.5-2 hours, during which I take a medical history, communicate with the patient, and convey information to the doctor. The doctor then makes the necessary recommendations. I also oversee a partnership program with the company "Yandex," which provides free transportation services for our doctors and patients. Additionally, I teach at our school, where I talk about equipment, its operation, and maintenance.
Q&A:
1. We often hear from colleagues about a need for more personnel. How did you look for and do you look for specialists for the Centre?
Sabila Shugelova: Currently, we do not have an official speciality of a palliative care doctor. This leads to a shortage of personnel and an individual approach to training, where every interested medical worker uses available opportunities for professional development in the palliative care field. We actively communicate with medical universities in the country, explaining the importance of such a profession, and we see positive shifts. The lack of specialists in palliative care complicates the preparation of regulatory documents regulating the sphere. Nevertheless, the most important aspect is having like-minded individuals who share our values and are ready to grow and develop.
2. When you transitioned into the palliative care field, was it psychologically difficult for you? Did you need support?
Nurbek Bakhytov: It was difficult at the beginning. I encountered many diagnoses for the first time. I didn't understand how to communicate effectively with children and parents. But I am learning, and my desire to help motivates me the most.
3. What formats of education currently exist at the Centre?
Natalya Savva: The Centre started with two formats: individual training and schools. Schools provide general theoretical training for parents and professionals who undergo training together. Therefore, we adapt the information to be understandable for non-specialists. Individual training consists of several consultations, each dedicated to a specific topic. We also use informational materials from other foundations.
4. Are there volunteers at the Centre, and if not, are there plans for them? What competencies do volunteers need, and how can they sign up?
Sabila Shugelova: Currently, we collaborate with youth volunteer organisations that assist us in conducting on-site events. We have yet to establish a fully established volunteer centre.
5. Please tell us how you found funding and how you plan to sustain it.
Sabila Shugelova: The first year was very challenging, and we often relied on "internal fundraising," contributing ourselves to organising doctor consultations. Now, we have several organisations collaborating with us. For example, pharmaceutical companies producing medications for patients with neuromuscular diseases are among our partners. It's essential to draft a project correctly to prepare an application; we are learning to do this properly. The optimal scenario is to have a major donor and engage small companies for additional expenses. We dream of building a strong fundraising department, which should become a full-fledged structure.
You can watch the video recording in English and Russian on our YouTube channel.
The summary in Russian is available via the link.
The public foundation 'Өмірге сен' specialises on children with neuromuscular diseases. The total number of Foundation’s patients is 530 people. Over 450 of them are children, and the rest are young adults. We can estimate the number of patients who will need assistance on these grounds based on the statistics of rare diseases.
Patients with neuromuscular diseases up to a certain age are not considered as needing palliative care. However, our Foundation provides respiratory and palliative support to such patients when necessary.
The Foundation's backbone is active parents. This allows us to have about 20 representatives among them in different regions of the country. United by a common goal and understanding of the situation, we meet with local authorities and monitor the situation in various parts of the country.
The Foundation has existed for over five years, and the first step was organising training for a wide range of doctors with the involvement of experienced specialists from different countries.
The Foundation also raises funds to purchase equipment, consumables, specialised nutrition, and home care. A logical extension of the Foundation's activities was the opening of the Respiratory Support and Palliative Care Competence Centre on June 1, 2022.
Natalya Savva — Ph.D., Associate Professor, Expert at the Respiratory Support and Palliative Care Competence Centre of the 'Өмірге сен' Foundation
The story of creating the Centre began with a meeting with the 'Өмірге сен' Foundation. The Foundation is based on active parents interested in solving daily tasks and issues, such as providing specialised medications and systematising this assistance and support.
This is how the idea of creating the Competence Centre was born, which went from concept to implementation in just three months. Based on conducted research and finding like-minded individuals, we formed an excellent team, prepared an application, and secured funding. On Children's Day — June 1, 2022 — the Centre opened its doors.
These three months were filled with active activities — we found an excellent location in the centre of Almaty; the landlord embraced our mission and adapted it for children in wheelchairs; we searched for experts and doctors who would teach our future attendees everything they needed. We planned to start training for parents, doctors, and medical staff, and we did — in July 2022, we held the first School and then conducted them on a monthly basis in different regions of Kazakhstan. The two main themes of the School were nutrition and respiratory support. Individual training and counseling for patients and their families also started. We went further and obtained permission to conduct medical procedures. Now, examinations take place at the Centre — both in-person and online — and the Centre's beneficiaries receive appointments and support in their implementation. Currently, you can get consultations from a neurologist and a resuscitator at the Centre. Selecting doctors was a separate challenging task. Unfortunately, there are few experienced specialists in palliative care. In our selection, we relied on medical professionalism, empathy, the ability to work with children with neuromuscular diseases, and the willingness to learn and acquire new knowledge. We were fortunate, and now our team consists of like-minded individuals capable of solving almost any task. Moreover, our doctors and nurses now educate their colleagues, telling them about approaches to palliative care that sometimes differ significantly from standard medical decisions.
A separate project funded within the Centre was the organisation of psychologists' work with parents of patients and teenagers.
We have plans to open similar centers in other regions of the country. Currently, we organise field consultations for patients and deliver equipment to them, but only some things can be brought — we need to develop centers in the regions.
You can start a centre like this with your brains and like-minded individuals. Gradually developing your activities, you will go from informing and educating to consulting and providing medical assistance. Starting the Centre from educational activities is the right approach.
In our Centre, we first acquired equipment for online education and consultations, then we bought unique equipment for examinations (not found elsewhere in Kazakhstan). We solved the issue of rehabilitation funding in Kazakhstan by adapting used items to new owners — this made the rehabilitation process continuous while waiting for individual units. Toys and non-hospital interiors was our joint effort with parents.
The fundraising process never stops — we write applications, communicate with potential donors, and tell them about the problems of children with neuromuscular diseases and our approaches to solving them.
A comprehensive approach to organising activities, informing and involving both local authorities and medical officials, allows for a change in the country's palliative care system. It is a lengthy process, but the most important thing is to start the movement.
Nurbek Bakhytov — Anesthesiologist-Intensive Care Specialist at the Respiratory Support and Palliative Care Competence Centre of the 'Өмірге сен' Foundation
At first, it was challenging for me to adjust. Working with children with neuromuscular diseases differed in approaches and methods from my familiar medical practice. However, I was eager to help children and devoted much time to training and studying this new medical field. Now, I am confident not only in medical work but also in sharing knowledge with other specialists and parents of children. I consult parents on respiratory and nutritional support, palliative care, nursing care, pre-hospital care during crises, and the use of medical devices at home, and I am a speaker at the Schools.
Shyryn Amantaeva — Nurse at the Respiratory Support and Palliative Care Competence Centreof the 'Өмірге сен' Foundation
My responsibility is to organise consultations for patients — we conduct them in-person and online. An individual consultation lasts 1.5-2 hours, during which I take a medical history, communicate with the patient, and convey information to the doctor. The doctor then makes the necessary recommendations. I also oversee a partnership program with the company "Yandex," which provides free transportation services for our doctors and patients. Additionally, I teach at our school, where I talk about equipment, its operation, and maintenance.
Q&A:
1. We often hear from colleagues about a need for more personnel. How did you look for and do you look for specialists for the Centre?
Sabila Shugelova: Currently, we do not have an official speciality of a palliative care doctor. This leads to a shortage of personnel and an individual approach to training, where every interested medical worker uses available opportunities for professional development in the palliative care field. We actively communicate with medical universities in the country, explaining the importance of such a profession, and we see positive shifts. The lack of specialists in palliative care complicates the preparation of regulatory documents regulating the sphere. Nevertheless, the most important aspect is having like-minded individuals who share our values and are ready to grow and develop.
2. When you transitioned into the palliative care field, was it psychologically difficult for you? Did you need support?
Nurbek Bakhytov: It was difficult at the beginning. I encountered many diagnoses for the first time. I didn't understand how to communicate effectively with children and parents. But I am learning, and my desire to help motivates me the most.
3. What formats of education currently exist at the Centre?
Natalya Savva: The Centre started with two formats: individual training and schools. Schools provide general theoretical training for parents and professionals who undergo training together. Therefore, we adapt the information to be understandable for non-specialists. Individual training consists of several consultations, each dedicated to a specific topic. We also use informational materials from other foundations.
4. Are there volunteers at the Centre, and if not, are there plans for them? What competencies do volunteers need, and how can they sign up?
Sabila Shugelova: Currently, we collaborate with youth volunteer organisations that assist us in conducting on-site events. We have yet to establish a fully established volunteer centre.
5. Please tell us how you found funding and how you plan to sustain it.
Sabila Shugelova: The first year was very challenging, and we often relied on "internal fundraising," contributing ourselves to organising doctor consultations. Now, we have several organisations collaborating with us. For example, pharmaceutical companies producing medications for patients with neuromuscular diseases are among our partners. It's essential to draft a project correctly to prepare an application; we are learning to do this properly. The optimal scenario is to have a major donor and engage small companies for additional expenses. We dream of building a strong fundraising department, which should become a full-fledged structure.
You can watch the video recording in English and Russian on our YouTube channel.
The summary in Russian is available via the link.