Innovation in a difficult environment: 24 years of Friends of the Belarusian Children’s Hospice (UK)

Daryl-Ann Hardman MBE

Founding trustee and chairwoman, Friends of BCH

Why Belarus? Why children’s palliative care? These were the most often asked questions during my twenty four years of NGO activity in Belarus.

As a Russian interpreter during the Perestroika era, I was inundated with work. I saw myself as a bridge helping people cross to a better understanding of and co-operation with each other. Those were wonderful years, full of hope. In the late 1990s I started wondering what the post-Chernobyl landscape was like in Ukraine and Belarus and arranged visits to children’s projects in both countries. Twice I travelled into the “Closed Zone” on the Belarusian side of the border, a desolate landscape of ransacked wooden houses, overgrown smallholdings and roadways reverting to forest. On a clear day you could see the huge cube of the Chernobyl nuclear power station with the damaged reactor inside its sarcophagus. It was a mere 20 or so miles away on the Ukrainian side. The border town of Hoiniki, just a cat’s whisker outside the closed zone on the Belarusian side was as one imagines a post-nuclear nightmare. Crumbling schools and hospitals with no equipment and struggling staff. Soviet apartment blocks with panels missing, balconies hanging at precarious angles and no lighting on the stairs. Electricity and other services were sporadic and unreliable. The main employer was the Zone guard service for whom the menfolk of Hoiniki went daily on patrol. Despite this, highly irradiated foodstuffs and pillaged goods continued to make their way onto the general market.

So why children’s palliative care? Having seen Hoiniki, the decision was easy: I was searching for a children’s or family charity serving the Chernobyl affected areas.

An early lesson I had learned was that if the person running a children’s institution in a post Soviet country drives to work in an imported car while the children in his care are poorly dressed, poorly shod, with sub-standard sleeping, washing and toilet facilities, I can do nothing. These children are unreachable to me as a Westerner because there is only one way in: via that same person. So the vital component was the local director – enlightened and non-corrupt.

My attendance at a small annual conference for those involved in providing humanitarian aid to Belarus and UK holidays for childhood cancer sufferers led to a meeting with the director of the first (and at that time only) children’s hospice in the Former Soviet Union. Poor English no barrier, she put across her passion for Western style children’s palliative care and told us about her small and independent hospice in the suburbs of Minsk. I was instantly hooked! Here was a woman I could do business with. The following summer I arrived at the Belarusian Children’s Hospice (BCH) with a donated £2,500 strapped round my middle beneath my clothing – bank transfers were complicated at the time. I was taken to BCH’s temporary premises in a former kindergarten in Minsk, saw the day centre in action and commenced my education about children’s palliative care. It is not the same as adult palliative care. Children’s bodies are striving to grow and develop, they fight their conditions for many years giving them time to develop secondary conditions and disabilities. The objective is to help these children live their best lives by providing the very best care in their own homes. The next day I was taken to a village on a collective farm. A wooden cottage on a smallholding was up for sale in a country that was taking its first steps on the private property market. It was just what BCH’s director, Anna, had been dreaming of: a summer holiday venue for terminally ill and disabled children. Of the asking price she said “An absolute fortune – USD 3,000! No one has that sort of money.” A few days later I had purchased the property on behalf of BCH and set my compass for helping to develop children’s palliative care in a culture that had not hitherto known the concepts “palliative” or “hospice”.

In 1998 the care system inherited from the Soviet Union was still encouraging parents of terminally ill children or those with multiple disabilities to give legal guardianship of their children to the state. Behind the closed doors of the secretive care institutions, many well-meaning but overworked and underpaid women tried their best to keep their charges clean and fed, but had no time to do any more. Families were discouraged from visiting and the children spent their entire lives lying in a cot, staring at the ceiling, with no cuddles and no stimulation. Fighting the stigma of having a “non normal” child and persuading the authorities that every child has potential became two of our prime long-term objectives.

Over the 24 years that our UK charity Friends of the Belarusian Children’s Hospice worked with BCH, we saw the hospice grow from 8 to 200 families and its reach from Minsk and suburbs to all round the country thanks to collaboration with regional children’s services. We soon turned the attention of our UK charity from just developing the holiday project to providing all BCH staff salaries and buying equipment.

The first children’s artificial ventilators used at BCH were UK manufactured and carried in by us by plane (Belavia helpfully gave us discounts). The problems were many: ensuring a flow of consumables from the UK, annual maintenance and adequate staff training in their use. Thankfully, within a couple of years a Polish owned medical equipment importer had opened in Minsk and could provide perfectly acceptable German-made ventilators. It was worth paying the price in order to have servicing and consumables available in Minsk.

In 2003 the local authorities where the former kindergarten was based noticed that BCH had Western support. This translated to them as readily available dollars. Overnight BCH was informed that it should start paying rent. As the exorbitant rate quoted exceeded our own fundraising forecasts, urgent action had to be taken. So while BCH’s director, deployed delaying tactics, going to Ministries and the mass media to make a fuss, I leapt into action in the UK and used all my best contacts to raise £60,000 within six months. It seems a small amount now, but at the time, it seemed enormous. We bought for BCH a half-built luxury home on the outskirts of Minsk. Rumours abounded why the house had not been completed by the original owners who had evidently left Minsk in a hurry selling the building for slightly below the market rate. BCH moved in as soon as the house was watertight and the utilities switched on. It had room for a small day centre and offices on the ground floor, more offices and a store room in the basement and on the second floor there were three family bedrooms specially equipped for accommodating children with disabilities who were in Minsk for medical treatment or whose parents needed to leave them for a few days under professional care while they attended to other business. In the loft conversion, we squeezed a chapel with a memory board for photographs of children who had died and a room for psychology and support sessions. It wasn’t a palace, but it was legally BCH’s property. Now no one could raise their rent.

It soon became obvious that BCH needed to develop its own fundraising function to make it less reliant on Western partners whose grant terms and conditions were frequently geared towards meeting their own objectives rather than those of a children’s hospice in a small post-Soviet state. A conference in Moscow led to my meeting the obvious candidate to initiate BCH’s fundraising service, a young lecturer in psychology at Minsk University with good English. Maxim was a boon. He willingly came to the UK to attend fundraising courses and consult with relevant colleagues in children’s hospices. Back home, he had soon placed BCH in the Belarusian public eye, company directors received letters and follow up calls and the money started coming in. Within two years he had two members of staff working with him, both trained by us in the UK. At last we could reduce our heavy support of the hospice staff salary bill and redirect some funds towards wider staff training which we had identified as the most valuable input we could make. In so doing we harvested the many years of accumulated UK knowledge and expertise in children’s palliative care.

In 2012 BCH identified the need for expanding children’s palliative care provision. Fundraising for a new state-of-the-art centre took some years to complete but by the end we had channelled £250,000 into the project, thanks to a marge UK charitable trust donation. The rest of the USD 3 million price tag had been raised by BCH’s own fundraisers, in cash and kind (donations from construction companies, for example). The opening of the building in summer 2016 was attended by Ministry of Health leaders and it was agreed that there was nothing to rival its facilities anywhere in the former Soviet Union. By this time our own UK led children’s palliative physiotherapy training programme was running and we had major input into the physio facilities. The building had been designed by a Belarusian architect following his visit we arranged to the UK to meet and consult with architects who had successful children’s hospice projects.

Our regular UK led children’s physiotherapy training programme moved into the new building and we started attracting applicants from all over Belarus and Ukraine. Neither we nor BCH charged for the training.

The new centre is still in Minsk and still functioning, but now under state control. The plus side is that the huge maintenance costs associated with running it are no longer BCH’s problem. The minus side is that BCH is no longer able to control the direction of development and it is becoming more of a centre of restorative care for children following accidents rather than palliative care, as discussed above. Despite the fact that restorative care is undeniably a good thing, I would have to say this was the project that I am least happy about. To tell the truth, it never was going to be a project over which we could have any control as a foreign registered charity. In Belarus we could not own such a building or the land it was built on. We advised against building such a behemoth, suggesting something smaller and more manageable, but such was the enthusiasm of our Belarusian partners that they went ahead regardless.

BCH has now largely retreated to its old facility that we built in 2003 for the princely sum of £60,000. It also rents seminar and office facilities from the state run centre. BCH has learned that bigger is not always better.

Another particularly Belarus problem has been the strict state control on salary levels. BCH has been pleased to train Russian palliative care specialists over the years. Several of these managed to attract significant funding in Russia for children’s palliative programmes. Inevitably, some of BCH’s specialists have since relocated to Moscow where salaries are appreciably higher.

Events since the 2020 democracy protests in Belarus have created a perfect storm preventing us from visiting BCH. Covid followed hard on the heels of the democracy clampdown, then the invasion of Ukraine via Belarus turned the latter into a country under Western sanctions. Belarusian charities receiving foreign funding came under particularly unfriendly and sometimes frightening scrutiny. BCH’s Advisory Board disintegrated as its members, mostly Belarusian business people, melted away. Eventually, changes to bank ownership squeezed us out of supporting BCH in any way but by telephone advice. In 2022 we took the difficult decision to wind down Friends of BCH (UK) and finally closed it in summer 2023. We hope very much that the training links between UK and Belarusian colleagues can be re-established when political and diplomatic events allow. We are confident that BCH will survive the storm and emerge smaller but confident to once again continue its pioneering work on behalf of children with multiple disabilities and their families. It has already completely changed lives and attitudes.

BCH children taking a bow after Little Red Riding Hood show at the summer house

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