Dear Supporters of Friends of BCH
I think that the sparkling new facilities at Forest Glade, the building built by the Belarusian Children’s Hospice (BCH) in the forest outside Minsk, have inspired us to new heights! Our charity in the UK has now
embarked upon its most ambitious project ever.
Until now, we have largely been assisting with projects initiated by BCH, providing funds to pay staff, advising and mentoring. One way we have had input into these is via the BCH Advisory Council in Minsk. After chairing this Council for 9 years, I stood down last winter and was pleased to hand over to a very active Belarusian Council member, Olga Kobyakova. I continue to be a member and attend meetings.
Back to the projects at BCH! The one exception to the ‘conceived in Minsk’ pattern was setting up BCH's own fundraising department. This initiative came from Friends of BCH 8 years ago and I was lucky enough to bump into just the right person to run it while at a conference in Moscow. That is how Maxim Padbiarozkin became the first full time fundraiser at BCH, mentored by us. Now we have launched our second initiative: children's physiotherapy and a pilot programme has been running at BCH for several months now.
Following visits to various ‘physiotherapy’ facilities in Minsk and conversations with paediatricians and BCH staff, we realised that ‘physiotherapy’ in Belarus has not moved on much beyond the early twentieth century. Children still endure being strapped to electro- or magneto-stimulation machines or are made to put on strange and uncomfortable harnesses and run on tread mills for long periods of time, sometimes while crying and begging to be released. The treatment on offer is provided by kind people who believe that they are acting in the child's interests but it is very far from being child centred.
Parents, used to this traditional approach, are delighted by the difference they and their children experience on the Friends of BCH Pilot Physiotherapy Programme at BCH.
Our programme is managed by our new trustee Deb Hunt with support from me. Deb was formerly the manager of physiotherapy services at the Oxford hospitals. We have a wonderful volunteer child physiotherapist working with us. Pam Parker has more than 30 years' experience of working with children, currently at Christopher’s Children's Hospice, and is donating her time and expertise absolutely free of charge. She and Deb have already been to Minsk three times and are due to go out there three more times in 2018.
There are no tears on this pilot programme. Pam chats to the children, plays with them and interests them in new toys while her experienced eyes and hands tell her where the problems are and what tiny movements she can help the child to make to improve his or her positioning and physical abilities. Pam makes eye contact with the child and, despite the language barrier, there are smiles and laughter. Gradually the stress slips away from anxious parents who are not used to an approach that says, ‘your child is the most important person in the room and everything we do must be acceptable and, better still, enjoyable for him or her’.
There are five trainee physiotherapists working with Pam and Deb in Minsk; two at BCH, who make home visits, and three in the Forest Glade day centre. We are trying to find a third person to join the BCH home team. This programme is already producing successes. A couple of children are now able to sit up in specially made chairs for substantial periods during the day. These are children who had been lying down until now and so unable to use their hands to play and feed themselves or to interact with people on the same level. Others are starting to roll over or to hold their heads up for a few minutes. These may seem to be small steps but they are massive leaps forward for these children and their quality of life.
If only our physio team could live in Minsk permanently, progress would be quicker, of course! But Pam has 4 children of her own to think of as well as all her grandchildren. I don't think they would happily let her go. Nevertheless, good progress is being made and lives have been changed for the better. We are glad to have found a source of special chairs with adaptions for disabled children in Minsk. They are made in Poland and Pam is satisfied that they are suitable. We have bought two and are planning to buy more very soon.
Thanks to you, we are now supporting the salaries of two (soon three, we hope) Belarusian physiotherapists at BCH, equipment for the physio programme, petrol for home visits and the cost of three visits per year by the Friends of BCH physiotherapy management and delivery team. As always, mere thanks seem inadequate to our wonderful supporters. If you could see the huge change this programme is already making to the children and their families, you would be wearing a smile throughout the year. The thought of them certainly keeps me going, through thick and thin!
The other people to thank are our wonderful trustees who labour on throughout the year raising money, keeping the accounts and ensuring the funds reach their intended target, cooking, running events, attending meetings, writing reports and producing our printed materials such as this newsletter. Without them, our charity would grind to a halt.
Thank you so much to trustees and supporters alike and a very Happy Christmas and New Year!
Daryl Ann Hardman
Trustee and Chairwoman Friends of BCH