By 2014, not a lot of people in Kyrgyzstan knew about palliative care. Accustomed to the pain of others and daily deaths, doctors just shrugged their shoulders: “What can we do if there is no medication?”
Work within Children’s Oncology helped me to see problems which could not be solved over years. And when a little boy with an inoperable tumour of the larynx, who could not eat and breathe, was discharged home, this tragedy was the starting point for my decision to create a children’s hospice.
Exactly one year later, this plan was implemented. Later, I discovered that there are more than 500 diagnoses applicable to children’s palliative and hospice care, where children are likely not live to adulthood. In order to separate the activities from Children’s Oncology, the Children’s Hospice has been officially registered and became known as the Charity Public Foundation “The first children’s hospice “.
The hospice building itself is a cozy two-story house with a small courtyard. And at the present moment we have to pay not a small amount of money for rent and heating, but it is possible with the help of sympathetic Maecenas. Having our own building would be such a gift!
The house has everything to make a stay there comfortable. Individual rooms for children and their families, a children’s playroom, a kitchen, and a room for employees and volunteers.
Home care service
The Home care service began working in January, 2016. During the day we had a time to visit only three families, many addresses are in new suburbs, without streets and numbers. After six months of hard work the list of children who really need help gradually became more accurate, but other areas of work still lie ahead, making the forthcoming work seem endless.
Parallel to this daily work – we help to get medicines, we organise transportation, we provide financial help to children diagnosed with cancer- it is impossible to list it all. An anaesthetic machine has been bought for the Children’s Department of Oncology Center, with the generous help of sponsors, and covers the purchase of needles for daily painless blood tests and the provision of anesthetic cream.
Included in our work is the registration of the most important medicine, oral morphine for children, an opioid painkiller, without which life for our young patients can be real torture. The Foundation has already raised $800 for the purchase of oral morphine, however it can be bought only once it is registered and brought into the country. However, we have celebrated a recent victory, together with like-minded people – the registration of fentanyl patches for patients with digestive tract problems, and those for whom it is hard to swallow a pain reliever.
On September 21, 2016 the Charity public foundation “First Children’s Hospice” and the Ministry of Social Development and Labour signed a Memorandum on creation of places for palliative care for children in specialised boarding houses. In future these will become regional centres of palliative care for children with Home care service. In these boarding houses there are about 100 bedridden children, conscientious objectors and those whose parents come to visit their children from time to time. And often it happens that employees do not even know the child’s diagnosis, or their therapy needs. The CPF “First Children’s Hospice” in conjunction with the Public Foundation “Children’s palliative” (Moscow, Russia) has held a 2-day seminar for the employees of orphanages.
Domestic palliative care services have only just begun to develop, for example bereavement care as a part of a psychological support service is completely undeveloped. I remember the case when, after the death of a baby, rather than giving support to the child’s mother, she was accused by her husband’s relatives who said that it was her fault that the child was ill. The woman was on the verge of suicide, and just in time we were able to stop her, support her, and direct her thoughts in a life-affirming direction.
Needs of the Foundation
The Foundation constantly requires not only finances and other material assistance, but also free hands, or someone willing to just talk or give a hug and be close to those whose health is not as good as our own. Any river consists of droplets, and great things can happen with many small donations. Drop by drop from each, a river will appear, and then become the sea!