66th day of the Russian invasion of Ukraine

Categories: Care, Community Engagement, Featured, and Opinion.

Ongoing hostilities in Ukraine have disrupted the medical aid and logistics infrastructure. Medical workers are either refugees or on the front lines which exacerbates the humanitarian catastrophe and limits access to medical and palliative care. The different kinds of access to medical aid depend on the zone in which people live. The Ukrainian area is receiving some humanitarian support. Hospices have been evacuated from the contested area.


What’s going on in the Russian-controlled area?

One family with young twins with cerebral palsy and spasms usually receive care at the Regional Clinical Centre of Medical Rehabilitation and Palliative Care for Children (Kharkiv). The family contacted us about the impossibility of access to anticonvulsants and food but we since then there is no connection with this family at all.

During the bombing, the staff, children, and parents of the Centre for Medical Rehabilitation and Palliative Care for Children were in the cellar before they were evacuated to Germany. We understand that they receive full assistance there. This is just an example. We know that the majority of oncology centres were evacuated to the west together with orphanages. Ukrainian children with oncopathology have challenges on two fronts – Cancer and War. Most of them have been evacuated. Understanding that in other countries our people receive quality care, we recognise that this is a great burden on the health systems of all recipient countries and really appreciate this. Thanks to this, much grief and death has been avoided.

Pre-war ties are broken. Many parental organisations are temporarily out of business. There is no coordination of palliative care. But this is understandable. Under the current conditions, horizontal functioning at the community level is more acceptable. And more and more different organisations and self-help initiatives are emerging, including psychological ones. It is not possible to track the availability of all who need it however people who have access to social networks can find information.

Since palliative care is funded by the government, a local decision was made to create services in safe and welcoming places with a local network in which small ideas can grow and develop action plan such as in an area close to Kharkiv.

The humanitarian catastrophe also concerns the treatment of pain. We helped draw up a pain management plan for our soldiers. For chronic patients in Kharkiv, a chatbot was organized with prescriptions, the location of pharmacies, and their opening hours. This chat is not limited to Kharkiv residents. We admit that our society was not ready for pain relief to be available. Perhaps humanity will take into account our experience.

There are no resources for palliative care during the crises in Ukraine. Therefore, it is important to increase everyone’s knowledge about the necessary actions and solutions, and possible support when people are coming face-to-face with death.

Another problem faced is severe malnutrition in children. Thanks to wide humanitarian aid, many clinical nutrition formulas are accessible but there are also two problems.  There is no access to food for the gastrostomy, and staff are not trained to prescribe this type of food. Gathering information about the same patients is very important.

We are praying for Peace. We want to care for all our children with life-limiting and life-threatening diseases. We have strong support from ICPCN, many hospitals, and most countries. We thank you all! Due to your support, we never give up!

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