Friends of BCH is undertaking a major long term project setting up and funding a ‘new to Belarus’ children’s physiotherapy service which will be available at Forest Glade and to children in their own homes.
Unfortunately the Belarusian medical establishment takes the view that children with complex neurological disabilities such as those cared for by BCH cannot be ‘cured’ and so have no potential for improvement. The state, therefore, only provides the most basic treatment. This is incomprehensible to us. In the UK and other western countries, these children would be treated by an integrated multi disciplinary team of different therapists who would identify their particular problems and work with them and their families to achieve their maximum physical and intellectual potential as well as improve their quality of life.
BCH and Forest Glade’s approach is in marked contrast to this and such children will receive all appropriate care to help improve their quality of life and assist them achieve their potential. Physiotherapy, as we understand it in the UK, is not a recognised profession in Belarus so we have coined a new term for this type of therapy: abilitation. Our project will assist, support and fund the development of an appropriate abilitation service to BCH children who would benefit.
Friends of BCH trustee Deb Hunt, a retired physiotherapist, and Pam Parker, a paediatric physiotherapist from Christopher’s Children’s Hospice in Guildford, visited BCH in the spring. Pam is an enthusiastic volunteer, fully committed to our project and giving her time freely – she took annual leave to join Deb on this visit. The purpose was fact-finding and setting up the pilot programme.
This is part of Deb’s report about their highly successful visit.
'We were made very welcome in Minsk and were well looked after in every way. Anastacia, the junior doctor attached to Forest Glade, acted as our interpreter with Daryl Ann, chairwoman of Friends of BCH, helping out on occasion. The abilitation team: Katya, Cristina, Olga, Yuri and Dmitry were enthusiastic and keen to learn. In fact all the BCH staff were so helpful and couldn’t have done more to assist us. This photo shows Deb, Pam and the abilitation team practising Makaton sign language.
Prior to our visit, we had agreed a programme with BCH staff. This included visits to two state run children’s centres in Minsk to gain a better understanding of the current treatment available for children with neurological conditions. BCH staff had also selected a number of children for us to assess with a view to including them in the pilot abilitation programme.
On our first morning we were shown round BCH and Forest Glade and discussed the current service with the staff. The facilities available are excellent with a good range of equipment and very much centred on the needs of the children. But is was clear that the current abilitation service at BCH and Forest Glade is very much a fledgling one given there is no recognised training course in Belarus and most of the team are very new to this type of treatment approach.
We then visited two state run children’s centres in Minsk. Though one provided an excellent service, it was only available to pre-school children with mild problems, certainly not the type of child cared for by BCH. The second was depressing and very alien to our way of thinking with the children being treated as mini adults – not a toy or colourful picture in sight! Their approach included many passive electrical treatments which would never be used in the UK and were certainly no fun for the children!
The next day we started work with the children in earnest. Pam did the assessments, talking the BCH team through them and teaching as she went along.
On subsequent days, members of the team took turns under Pam’s guidance, pictured. Thirteen children were selected for intensive treatment, short term goals for each of them were identified and treatment plans agreed.
By the end of the week, the abilitaion team had really started to work together as a team. Apparently, team work is a concept seldom adopted in Belarus where staff seem to work within a rigid hierarchy. So this is another of our objectives – that the abilitation staff will work together as an integrated team, share ideas and set up regular sessions to discuss their patients and clinical theory topics.
It was a very memorable and enjoyable trip, albeit too short! But we achieved what we had planned – setting up the pilot programme. We also made several recommendations, all of which have been accepted and some already implemented. We are looking forward to visiting every few months to see how things are going and to continue to help and support them. In the meantime, there is email and Skype so we can keep in touch on a regular basis. The abilitation team will be able to contact Pam with clinical queries and I will be pro-active in monitoring progress and coordinating the overall project.'
One major problem Deb and Pam identified straight away was the lack of any appropriate seating for the children. Without proper seating, children may be left lying on a rug on the floor or maybe on a beanbag which does nothing to help them develop.
Good seating, tailored to each child’s specific needs, has major physical and psychological benefits. It helps reinforce the exercises done during treatment, facilitates breathing and makes it easier for parents to feed them so they are better nourished and digestion is improved. Just as important, the child can engage with the world around them, see what is going on and maybe play with a toy in front of them. Achieving a good sitting position really does help improve the quality of life of these children and their families.
At the moment hospice children do not have access to suitable seating like that available in the UK. This is partly due to the high cost of such equipment as each seat costs about £2,000. Friends of BCH have undertaken a fundraising campaign to purchase some adjustable seating systems which can be used for in-patient children and enable other children to have their precise needs assessed. Pam will teach them the assessment skills and we will then help the hospice set up a workshop to make suitable seating for individual children tailored to their specific needs. Wooden chairs with body harness, padding, support cushioning etc can be made relatively cheaply and is a sustainable long-term solution.
We are delighted to report that two such seating systems, like the one pictured, have been ordered and will be ready and waiting for Deb and Pam’s next visit!