Guest article by Oleksandra Balyasna, Head of  partner parent organisation “Early Birds” in Ukraine and member of the EFCNI Parent and Patient Advisory Board.

Knowing your rights guaranteed and provided by the State can decrease the stress among parents of preterm babies and improve health outcomes for both mothers and newborns.

Questions to think about for every parent organisation:

Does your patient network know their rights and where to check this information? Do you know what to do when your rights are being violated?  How is this affecting the confidence of the caregivers when they know what their rights are and what to do if something went wrong? Would this enhance their stability, confidence and improve the outcome of the treatment if the rights are known? 

Since December 2023, the NGO Early Birds has been working on a project in which the main goal is to inform parents of preterm babies about the rights that are guaranteed by the state within maternity and childcare medical services. This year-long initiative involves numerous campaigns, featuring participation from celebrities and opinion leaders, all geared towards raising awareness and educating the public.

The project is important for us not only due to our commitment to advocacy, a cornerstone of Early Birds’ work, but also because of the numerous uncertainties and challenges stemming from the ongoing conflict in Ukraine. In such an environment, families must have access to essential medical support and be aware of the resources available to them in situations related to pregnancy and childbirth.  Medical services within maternity and childcare are the focus of the current government and all the teams in healthcare.

Preterm birth is the tough milestone which requires special attention and support. The questions, frequently concerning the parents of “early birds”,  are connected to the cost of medical care, with fears that the cost would be too high to afford especially when we are talking about a very sick or very preterm baby. Thus, parents are often overwhelmed about unpredictable situations with preterm labor and come to us with questions like: how to get follow-up care for free or who has to cover the expenses of the transportation of the baby and others.

Our team at Early Birds takes pride in supporting families and providing them with clear instructions and guidance on where to find essential information:

• We support up to 100 families every month with consultancy services.
• The communication coverage is up to 1.2 million people within the project.
• More than 100 medical institutions have joined our project wishing to inform their patients better and be transparent and patient-oriented in their services. With this subscription, they get free trainings and information materials about the project.

We help to understand what the services are within childbirth, NICU, and follow-up covered by the guaranteed packages of the National Healthcare Service of Ukraine and closely collaborate with the state.

It is also very important to know the pathways to take when your rights are being denied: In case you are provided with the bill for the services, which are supposed to be free of charge, you are entitled to dispute it. We provide all the support about the dispute process and how to protect the rights of the patients too.

Overview of the situation in numbers

It is interesting to know that a recently shared questionnaire among parents of preterm babies that went through a medical treatment in the last three years evaluated their knowledge as the lowest about the guaranteed medical services provided by the state: 182 respondents out of 259 choose 1 from 5, where 1 was the lowest range and 5 represents the feeling that they know all about the topic.

It is also important to mention that the abbreviation of PMG (Program of Medical Guarantees  which is covered by the state and undergoes medical reform in Ukraine) is unknown for 75% of respondents.

In a week, there were 259 respondents from all over Ukraine, from each of the 24 regions. The biggest number of respondents is from the capital, Kyiv, where 62 families with preterm babies left their responses.

We also wanted to know if parents knew what they should do if their rights are violated, and only 11% of respondents chose YES as an answer. Almost 60% responded with being likely not to know what to do when a violation happens.

Receiving 150 comments about the violation of basic rights gives us also a huge perspective on what the most common gaps in the system are and where we should work more. We see that gaps in communication tend to occur in the majority of cases: most often not knowing and not explaining the information enough can lead to aggression, misunderstanding, and, as a result, worse outcomes for the health of baby and mother.

Comments that we received give us an understanding that we are on the right track now with supporting our families:

“Thank you for your project. I am the mother of a premature baby. I found out about your organisation and any help in general only half a year after the birth of my child. No one in the perinatal centre provided any information, communication with the staff was very limited. There was not enough psychological support. The stress still hasn’t passed (2.5 years).”

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“I was not aware about many services that can be obtained for free, so we had to pay for everything, massages, rehabilitation, nothing was for free, only recently I found out that it can all be provided by the state without any charge. Patients for sure need more information about their rights to have access to free services. When you have a small baby in your hands who needs special care, then you will throw all your energy and money into making it grow faster and gain strength, so that it does not lag behind in development, and there is not always time to look for something for free putting an extra effort in fighting for your rights”

We understand the challenging and emotional circumstances faced by parents of preterm babies, particularly amidst the full scale war in Ukraine. We work daily to support and remind those families that they are not alone in their journey. We believe that support and information are fundamental in fostering  strength and confidence.

To know more about this project please visit the page:

https://ranniptashky.org/en/garantovano/

Awareness and knowledge – is a great power!

The project is being carried out with the support of United States Agency of International Development (USAID), Ministry of Health of Ukraine (MHU), National Healthcare Service of Ukraine (NHSU), CF “Patients of Ukraine” which is the biggest patient organisation in Ukraine. 8 patient organisations are partners of this project, among which 280 days and Early Birds are covering the topic of pregnancy, childbirth and mother’s care.