Palliative care for children: training for medics in Belarus continues despite the pandemic
Daryl-Ann Hardman, Founding Trustee and Chairwoman of Friends of the Belarusian Children’s Hospice (UK)
We have been working with Belarus for over 20 years. Our name reflects the identity of our main partner throughout this time: we are Friends of the Belarusian Children’s Hospice (UK).
The first, and very natural, misapprehension to put to rest is that we are solely concerned with “dying children”. Even if they have a terminal disease, children’s journeys are very different to those of adults who find themselves under hospice care. Children may be born with obvious signs of neurological or other conditions, or these may appear at a later stage in their lives. Children can also, at any age, like adults, experience trauma due to an accident or some hitherto hidden issue, such as a weak blood vessel in the brain that bursts causing a bleed and subsequent (frequently multiple) disabilities. Children’s bodies and minds are programmed to grow and develop, so a conflict is played out within them, between the progressive worsening of the disease and secondary problems arising from it on the one hand, and the young body’s determination to grow and develop into an adult, on the other. This can make for much longer life spans in children than in adults who develop terminal conditions when the body is no longer developing. So, Friends of BCH are concerned with children who probably have a shorter life span than the rest of the population and have to live with multiple and sometimes profound disabilities. They are still children. They have the right to a childhood, they just need help to achieve quality of life.
In Belarus, where childhood disability used to carry a terrible stigma, the tendency was always to hide away disabled or permanently injured children in homes run by the state. I cannot say that I personally have ever visited a children’s home in that country that was run by cruel or hard-hearted people, but I have seen sights to make the heart bleed. Staff (usually women) have more special needs children to cope with than they humanly can. The result? The children spent every single day of their lives lying in cots receiving just basic care. No hugs, no play time, no stimulation, no teaching, no change of surroundings. Just the white ceiling to stare at. Worse of all, they are not at home with their families. Children wither in the anonymity of large institutions.
In our over 20 years’ association with BCH, the type of aid that we provide has changed. To begin with, BCH dreamed of having land in the countryside to build a holiday centre for children with multiple disabilities. That was our first project. Having achieved this, we started fundraising to pay BCH staff salaries, then to buy and convert a building in the capital, Minsk, to give BCH its own secure home. While continuing to pay all BCH basic staff salaries, we then set up BCH’s own fundraising department, based in Minsk, and trained the first Belarusian fundraisers, so that BCH gradually attained the position of not relying on income from us or assorted international grants. I am happy to say that, 12 years on, the four BCH fundraisers have become experts in raising money in a country that is still unsure about the identity of the “Third Sector”. If an organisation is not run by the state, people assume it must be in the minority category of private business. Despite “Not for Profit” proving a difficult concept to get across, BCH is now raising its own income and could survive as an organisation, without us, while still providing all services for free. That milestone was a huge relief!
The BCH fundraisers raised the money and donations in kind to build a large, state of the art children’s palliative care centre that it shares with the state (while retaining its own building nearby, with its proud identity of a charitable organisation). The relationship between the charity and state in the new centre has been a rollercoaster ride of discovery. Some “Western” concepts of working with children with profound disabilities have been well accepted by state colleagues; in other ways they remain mired in old-fashioned directives on treatment, with little regard for the wishes or preferences of the child or their families. For us, the main issue that has raised its head is the need for ongoing education for medics and carers in Belarus. The training for physiotherapists, for example, has not changed for years – they are still applying aggressive treatments developed in the early 20th century. The sound of children crying in treatment rooms is nothing unusual. Yet the staff persist in their belief that “there is no gain without pain”. I must emphasise straight away, that this is NOT how BCH works!
The pandemic has forced us into a new way of working and our charity has launched two initiatives. Firstly, an educational programme for Belarusian physiotherapists caring for children with neurological disorders. This was due to be delivered by UK trainers face-to-face in Minsk in September 2020 but is now being developed on-line. The UK group developing it is the Association of Paediatric Chartered Physiotherapists. We have agreed with our Belarusian partners, BCH and the Belarusian Medical Post-Graduate Academy (BelMAPO), that the programme will be ready for online delivery in autumn 2021. The programme is not so much aimed at BCH physiotherapists, who have already been taught for three years by a UK children’s physiotherapist who has made numerous visits there, but at staff in other children’s care organisations and hospitals around Belarus with whom BCH already collaborates and who are thirsty for up to date knowledge. Secondly, in co-operation with a consultant at the All-Wales Paediatric Palliative Care Network and lecturer at the University of Wales, experts at Together for Short Lives (the umbrella body for UK children’s hospices), and a paediatric oncologist working in Lisbon, a series of 6-8 webinars are being developed aimed at doctors in Belarus who find themselves caring for palliative children without having had adequate training for this. (Children’s palliative care training is almost unavailable in Belarus except at BCH). Each time a new doctor joins the team at BCH, the process of educating them in children’s palliative care begins more or less from scratch. And, yes, it is VERY different from caring for non-palliative children who are expected to recover from illness and rocket back into normal childhood lives. The first webinars in this series are due to go live from late spring 2021.
From our point of view, the pandemic has caused us to pause and reflect on how we can continue improving the lives of Belarusian children with palliative conditions and multiple disabilities in a “remoter” way than we have been used to. The solutions we have adopted will help solve the pressing problem of a lack of palliative-trained medics in a timely way. What’s more, these solutions are pleasingly more permanent than flying out groups of experts to teach for a week and then leaving again. We will be handing over extremely valuable and re-usable products that will truly satisfy the need for sustainability.