The group consisted of Hazel Padfield, a Community Paediatricain who belongs to the Gloucester CCP group and has been to Belarus twice before; Marie Owen, a Consultant Paediatrician, Helen O’Donoghue, a Diabetic Community Nurse and Alison Naylor, a Dietician. All the participants were from Gloucester and had worked together before, which meant they had no trouble gelling as a group and were used to sharing ideas. Catherine McElholm of our Solihull group also visited at this time and came on many of the visits with us. The primary purpose of her visit was to spend some time at Svetlagorsk orphanage to see which children would most benefit from a visit to Britain this Summer and also how else the group might support the orphanage.
One of the original aims for the medical visit had been to promote Community Health Care, something which the Director of Health for Gomel Region was very keen to do. But unfortunately this Director was sacked during the Summer, and this was no longer a practical idea. So the most important themes for the visit were the improvement of treatment for children with epilepsy, looking at diabetic care and advising about feeding problems.
Our first visit was to the Regional Hospital where we met the Chief Doctor, Anatoly Kasim, in his office. The group were keen to learn about the kind of health problems the hospital faces and to what extent these are thought to be related to Chernobyl. Anatoly was friendly and helpful but not very forthcoming about Chernobyl effects. We had a look around the neo natal department and then had a discussion with the senior doctors in Neurology, which was quite strange. They told us about the drugs they used and Marie discussed alternatives which they did not seem interested to hear about. They said they did not treat many children with epilepsy as most of them were treated at the psychiatric hospital. They could only treat children with normal intellect in their hospital. It was sad to think that children would be barred from going to the hospital because of a learning difficulty, but even more distressing to realise that nearly all children with epilepsy have brain damage because their condition has not been treated adequately and long fits have caused the damage.
Marie spoke to them about rescue medication. In Britain when a child has a major fit he is given rectal valium (although this is now being overtaken by a new drug which can be absorbed through the mouth). Rectal valium is easy to administer and quickly controls the seizure. The doctors at the Regional Hospital said it was not available in Belarus and were not interested in knowing any more about it. We got a very different reaction from other doctors later in the visit.
We moved on to the Abandoned Babies Home where we watched a group of 2 to 4 year old children playing games and doing a small performance. It was lovely to see the Downs Children taking part and some of the other kids helping them. Tatiana, the Director, told us how two of the children had been returned to their families last year. This was regarded as a great success and they hope that more children can be taken back by their parents in the future.
The Home is split between two buildings, one for toddlers to four year olds, and one for babies and the more disabled children. It was later in the week when we visited the second building. There were some lovely, happy smiling babies but Alison in particular was quite distressed by the condition of some of the disabled children. There was one little boy who she could have organised a perfectly adequate feeding system for, but the staff said they preferred to feed by spoon and they were not allowed to use special nutrition. All the children ate the same food, it was just liquidised if necessary. One boy, Vanya, who had been completely blind, had just had an operation and now through thick glasses he could see a little.
Many children used to move on from the Baby Home to Zhuravichi. Now some of the Downs children are going to Ulookavye, which is a lovely orphanage for children with mild to moderate learning difficulties. Mozyr, an orphanage for your children of four till 8, is now taking some of the disabled children from Abandoned Babies and Rechitsa Boarding School for Children with Cerebral Palsy takes others. Only the most severely disabled go to Zhuravichi.
We visited the new and very impressive Republican Hospital just outside Gomel. This hospital was planned by Russia, Ukraine and Belarus soon after the Chernobyl accident. It was sited in Gomel so that it could take patients from all three countries and its official title is Republican Scientific Practical Centre for Radiation Medicine and Human Ecology. In the leaflet which describes the hospital, it is said to monitor and treat people affected by Chernobyl. We were ushered on arrival into the office of the Hospital Director, and Marie asked her what kind of illnesses the hospital saw. She was told that there was no time to give a full lecture on the subject, and apparently no answer at all was possible without this, so we were quite quickly dismissed and sent off to visit Endocrinology.
George is Head of the department which used to be situated in the Regional Hospital. He showed us round his spacious department which is light, attractive and has a private room for each child, who can stay with his mum if needed. George was very friendly and helpful but some of his answers about how children’s conditions are controlled were perhaps a bit closer to the textbook than to reality.
In the Regional Children’s Hospital we visited the neo-natal department. This has recently been given a major renovation and new and sophisticated equipment installed. This means they can keep very tiny babies alive. One little boy had been clinically dead for 30 minutes but was revived and was now being kept alive with no hope of making any kind of recovery. And a little girl of almost 2 will have to live in hospital permanently as she cannot breathe unaided. She is much loved by the hospital staff but has very little to look at and keep her entertained, so we will take some mobiles to put above her bed.
Next stop was the Psychiatric Hospital, where we received a warm welcome from the Chief Doctor and his deputy, who were hoping that we might like to help with some of the renovation currently taking place. They have had a long and very fruitful relationship with a Dutch charity but their programme of work together is now coming to an end. They took us round what will be the children’s wards when the work is completed and it was very attractive. Then we went to the Women’s department and that was deeply depressing. The doctors say that they try to give as much therapy and as few drugs as possible, but the place seemed so crowded this hardly seems possible. The temporary children’s department is very tiny and was crammed with about 40 children. They were having lunch when we arrived and then they were all sent off to bed for the afternoon sleep which is part of the ritual of every institution in Belarus. They take children who are autistic (I can’t imagine what they do with these poor kids or how it could possibly help them) and children with epilepsy, behavioural disorders, psychoses and neuroses. In the small space the children currently occupy there would be very little that could be done with them other than administering drugs. We asked about children who might be referred to them because of behavioural problems caused by abuse at home or in an institution, and were told by the Chief Children’s doctor that they were aware of this possibility and they worked very closely with parents and teachers. Marie spoke to them about epilepsy treatment and they were very keen to try rectal diazepam. Marie was impressed by Natalia, the young doctor who was in charge of the children’s treatment, and so invited her for an educational visit to Gloucester in the Spring. She was obviously delighted by this and so was the Chief Doctor. Although children from Zhuravichi are sometimes treated in the hospital, Natalia had never been to Zhuravichi herself, so we invited her to come with us a couple of days later.
We spent an enjoyable evening with the Diabetic Association and all the medical team were impressed by how much the parents knew about the care needed for their children. Their biggest problem is a shortage of test strips and this is desperate for young adults. Children are given one test strip per day – children in the UK would normally use four – but at eighteen years old this stops and no test strips at all are given. They are almost as expensive in Belarus as they are in the UK, so for many families it is impossible to buy enough. This leads to loss of limbs or eyesight and in some cases to young people dying simply because they cannot monitor their condition properly. One of the members of the committee said her daughter was hoping to become pregnant soon and she needed to stabilise her condition first. She had been advised to switch her insulin to Humalog, and could we buy this for her for a short time? On advice from the medical group that this would be a good idea, I made a donation for this insulin. We were also asked about Ira, another daughter of a committee member who they wanted to employ to work in the Centre, so that there could be someone there all the time to answer the phone, look after visitors and keep records. I agreed that we would sponsor this girl for $50 a month and they were over the moon. It was agreed that Helen, the Diabetic nurse, would spend the next day with the association, visiting families while the rest of us went to Minsk.
We flew to Minsk on the Wednesday morning in the propeller plane which is quite an experience the first time you do it. I dread to think how old the plane is – forty years at least, I believe – and as it prepares for take off the propellers go faster and faster and you feel as though the whole machine may fall apart at any moment. Once it is in the air it feels fine, and the whole journey takes forty five minutes and costs just $10, so it makes a day trip to Minsk easy to plan into an itinerary.
We were met in Minsk by Ira, who works for Children in Trouble, the children’s cancer charity, and for CCP(UK). I had hoped that our first visit would be to the Chief Neurologist in the city so that Marie could have a good discussion with her about epilepsy care. Eighteen months earlier this doctor had seen a child from Zhuravichi at our request and had changed his medication very effectively. Unfortunately wires had been slightly crossed and we were taken to a Rehabilitation Hospital for children with physical and psychoneurological disorders. After some attempts to discuss epilepsy with the chief doctor it became apparent that this was not one of his specialities at all, but it was a fascinating visit as far as I was concerned. This doctor organises conferences on early intervention, has good contacts with the Tonus Centre in Brest and Polyclinic No 19 in Minsk. He is a strong believer in multidisciplinary work, which is unusual in Belarus. The hospital is for Minsk children only so we cannot refer any of the children in Gomel who would benefit from the wide ranging treatment they have to offer.
Next stop was the Prosthetic Centre. This is a huge building where prosthetic limbs are made and fitted and people can come for rehabilitation. There is a wonderful swimming pool for children and lots of space for people to exercise and get used to their new limbs. In the huge hall paralympic athletes were playing basketball. The Director, who showed us round, was very friendly and helpful and it felt like an excellent place for adults but rather large and dark and not very child-friendly. Although this must be where children come from Barovlyani Hospital when they have lost a leg to cancer. We were shown round the workshops where the limbs are made and discovered that this centre also produces many mobility aids – wheelchairs, walking and standing frames, bath aids, special seats, etc. These are all very reasonably priced and we were told that children are entitled to an appropriate wheelchair and that social services should put in an order when the child has been assessed. Also children who need them should receive two pairs of Pedro boots every year.
We told the Director about Ira, (who is five years old, lives at Rodni Kut in Rogachev, had her deformed feet removed in Exeter in June 2003 and has since had several pairs of prosthetic limbs fitted in Devon) and she was very moved and asked to keep a picture of her. She would be very happy to help in any way possible in the future.
At the Belarussian Children’s Hospice, Anna Gorchakova took us on a tour of the building which has been made so beautiful since it was purchased just over a year ago. Then Marie and Alison were whisked away to visit families and give advice, while Hazel and I stayed to talk with Anna. We discussed the Palliative Care training programme which specialists from Britain will carry out in Belarus over the next couple of years. And we talked about the setting up of new hospices. Mogilev Hospice, which arose through Irish support after Anna came to speak at the Belarussian Embassy Conference in 2003, is thriving. Vitebsk Hospice had been struggling, but Anna felt that it would now benefit from more support. Hazel agreed to approach colleagues to seek support for this Hospice, whose doctor she had met on an educational visit to Gloucester a couple of years earlier. So we were able to promise regular monthly support for Vitebsk Hospice. Anna is currently planning to set up a nurse, with some local palliative care support, in Grodno and Pinsk. Chernobyl Children Rye, who attended our conference in 2004 and learned about the need for Hospice support, will fund one of these nurses and have also agreed to buy a small car for the use of the nurses in Minsk.
We decided that the hospice families would greatly benefit from the advice Alison could give them about feeding, and she agreed to stay in Minsk for an extra day. So Hazel, Marie and I headed for the airport, only to find that the flight was delayed by several hours. It turned out to be a blessing is disguise as we spent a delightful evening at a small restaurant near the airport where the young Belarussians celebrating a Birthday party there made us join in with their dancing. We had to practically run back to the airport in the end to catch the flight to Gomel.
On the Thursday morning we had a delightful visit to Special School No 5. In September a small class had opened for five children with serious mobility problems, following our setting up of ramps and disabled toilets earlier in the year. I had visited the class in September, and now just two months later, I was struck by how much the children had developed. They were more relaxed. communicative, mobile and happy and I am sure their parents must be delighted with their progress.
The medical team talked to Tatiana, the doctor who looks after the school about the treatment of pupils with epilepsy. Last year we were able to persuade the Director of Health in Gomel to find the funding to create the post of Consultant doctor to School No 5 and to appoint Tatiana. The level of medical care in schools is usually quite low, and we were able to convince Krissenka that giving good quality care in a Special School would be a good step to creating more care in the community and having less children in hospital. In June last year we brought Tatiana to Britain with Aleg, the Director of the School, to visit special schools and to spend a day at the David Lewis Centre in Altrincham. She learned a great deal during the visit about epilepsy care and treatment. So when Marie asked about use of rectal diazepam, Tatiana knew all about its advantages and said she would love to have the opportunity to try it and that she could talk to pharmaceutical companies about the possibility of producing the medication in Belarus.
At the Mayflower Centre we met the mother from Mozyr who had been for a holiday in Gloucester during the Summer with her two profoundly disabled sons. Sergei and Dima had been diagnosed in Belarus with cerebral palsy, but they almost certainly have a rare genetic disorder. Marie had seen them in Gloucester, treated their constipation and prescribed them some special build up food. Their condition is likely to degenerate fairly quickly and we hope that their family will seek regular support from the Mayflower Centre. We had suggested that Natasha, the manager, might know of one or two families with concerns about their children who might like some advice from Marie, This was a mistake! About 15 families were patiently waiting at the Centre and the medical team had to see them all. Marie had just gone down with a cold so this was quite an ordeal, and she was keen not to contradict the children’s own doctors after just a ten minute consultation. The positive thing which came out of it was that Marina, the doctor who acts as consultant to Mayflower, was thinking on very much the same lines as Marie. It was decided that Marina should come to Britain with Tatiana in March on the educational visit to Gloucester.
On Friday we went to Zhuravichi and took with us Tatiana from the Psychiatric Hospital, Sergei from the Children’s Surgical department of the Regional Hospital and another doctor from his hospital who specialises in respiratory problems. Raisa had not been very keen on us bringing doctors from the UK to Zhuravichi, so this softened the blow for her, as she was quite happy about the Gomel doctors. It did however make us a huge delegation and Raisa resisted my suggestions that we split up. She took us first to see the children having lessons, which was really quite unnecessary as it was more important for all the medics present to see children confined to cots or those with very disturbed behaviour. When we did get to the more disabled children it was excellent to see the Gomel doctors in consultation with the Zhuravichi nurses and the wonderful nuns who give the children so much love and care. Alison, the dietician, was quite impressed that most of the cot children looked as though they were reasonably well fed. I did worry afterwards that I had not seen some of the thinnest children. And Raisa deftly managed to avoid taking us to see the autistic and most mentally disabled young people by running out of time. But it was a very worthwhile visit because of the connections made with the Gomel doctors who promised to keep in touch and to take a few of the children for treatment or operations.
We visited Rogachev Hospital and had a long and interesting chat with the Chief Doctor. He told us that 18% of Belarussian population have a mitral valve heart problem. The English doctors were amazed by this as the condition is quite rare in Britain. He showed us some of the hospital equipment which is mostly either Russian made and poor quality, or donated from abroad and quite old. We met one poor little boy who is HIV positive and is living in the hospital at the moment while the paperwork is prepared to send him to the Abandoned Babies Home. We talked about the possibility of one of the doctors from the hospital making regular visits to Zhuravichi. Currently the children’s regular medical care is in the hands of the doctor who runs Zhuravichi Hospital. He is not a paediatrician, and as far as I can see from observing him he has little interest in children. We discussed who might pay for these visits and how the transport would be arranged. The Chief Doctor said he would be interested in doing this himself, perhaps alternating with another doctor. Later I spoke to Social Protection who said they would pay for it, and Raisa told Liena that she would be very happy to have such an arrangement. I hope when I go back to Belarus at the end of January to make sure that it actually starts to happen.
At the Rogachev Families Assocation Centre we were joined by the children from Rodni Kut and we all took part in a party and watched a performance of poems, songs and dance by some of the association’s children. Ira joined in one of the games and the boys had to let her win as there was a chant of ‘Eera! Eeera!’ going round the hall. At the end of the performance Anya, Nazar and Ira sang a song with Luda, one of their carers. It was good to see many new families taking part in the events this time. Then we had a look around the Centre and the group were very impressed, as all visitors are, by the paintings of Allessia a 19 year okd girl with very severe cerebral palsy. In the evening we went out for a meal with the association committee members, and the snow which had started to fall in the afternoon was getting quite heavy by the time we went to bed.
The next morning the snow was deep and still falling. We had breakfast at Rodni Kut and then enjoyed an hour playing with the children. Marie and Hazel had a look at Nazar and Anya and said that Nazar in particular would benefit greatly from a drug called baclofen which would help to relax his muscles. It might be useful for Anya too. Both children wake up crying in the night.
Back at the Association Centre there were many families waiting to see the medical group. We had hoped that the snow might put them off, but not at all. So we divided them into two groups and Alison and Helen looked after all those with diabetes, consulting Hazel when needed, while Marie did a consultation for the rest. There were many mums with children who I had always thought looked quite healthy, who were in tears about their heart or kidney problems. One young mum was very distressed about her baby so Marie went for a private chat with her in the office. This meant that we lost Liena, our interpreter too so Hazel and I were a bit stuck and had to have a very stilted chat with the rest of the group in my poor Russian while we waited for their return. It took several hours before all the children had been seen and the parents had received, in most cases, the advice that their own doctors were doing the right thing.
Nicolai arrived after an exhausting trip battling through the snow from Gomel. He swallowed a quick cup of tea and was ready to head back again. Catherine was not with us as she had gone the previous evening to stay with Olga, one of Solihull’s interpreters in a village north of Rogachev. We eventually managed to get through to her on the phone and she told us that Olga’s family would try to get her to the airport in Minsk the following morning, when the group were all due to return home. We did not hold out much hope of her making it to Minsk in time. It was snowing hard with a strong wind and sometimes we could not see the side of the road at all. Nicolai did a great job getting us safely back to Gomel and then he had a call from a friend to say that the road between Gomel and Minsk was completely blocked. We decided that the group should return to Minsk by train as the only safe and sure way of getting there. Fortunately Belarussian trains are not troubled by snow, even of the wrong kind, so Liena Nicolai and I packed them all off on the late train on Saturday evening and Ira and Fedor from Children in Trouble met them in the morning. They had a rest and breakfast at CiT and then were delighted to hear that Catherine was going to make it to the airport on time!
This was a very positive visit, resulting in the planned educational visit to Gloucester for two doctors; many promises of follow up from the team on helping with diabetic supplies and advising on epilepsy care; and Marie prescribed baclofen for Nazar, which he started at Christmas.
Linda Walker January 2005