Psychiatric Hospital Tatiana said that there was to be a conference in May about Autism. She wanted more information about approaches in Britain for a speech she was going to give. I said if she could give me the date of the conference perhaps we could find a specialist in working with autistic kids who could come. She said if we could find the specialist she would fix the date of the conference around when he or she could come. Could be May or June.
Two of the children who Rosemary met at Rechitsa Boarding school in December were in the hospital. They had not had any seizures for some months but this week have both had a major seizure. This may be because of change of medication, which we heard more about when we visited:
Galina Shevko, Chief Paediatrician Galina told us that it is now very difficult to get medicines from abroad if the same medicine is made in Belarus. If it is not made in the country, then the government asks for tenders and they have just agreed to buy all their topimirate (an epilepsy drug) from India as their tender was much cheaper than anyone else’s. Galina was going to talk to the Director of Health in Gomel and tell him that there were some children who have been doing really well on Topomax, when no other drug had suited them, and the change might cause them big problems.
The main reason for visiting her was to discuss the rectal diazepam project. This has not progressed very far. She says to get permission from the Ministry of Health to do a trial with this drug in Gomel she needs a document to show that the result of all the discussions which took place in Britain in the early 90s (and she has a translation of these) was that it was decided that rectal diazepam should be used in homes and schools as rescue medication for prolonged seizures and a later document to show that it was effective.
She is currently also checking which documents are needed in order to bring the drugs into the country. Galina says this can be done before the project is officially authorised. But it would not make sense for us to spend any money on these medicines before we know the trial can go ahead.
Duyanovka Liena and I had a chat with the Director first. He thanked us for the aid – an electric wheelchair, other disability aids and pampers. Said they would love to receive bedding in particular, plus nightclothes for women, suits for men and shoes for all. He followed us to young people’s area and into Sasha’s room. We had to practically shoo him out so we could have a private chat. I was amazed to find that he was still outside half an hour later and anxiously asking if we had any complaints. Sasha had moved to another room and said this was to help a young man called Andrei, who was going to be paired up with a ‘drunk criminal’. Sasha seemed rather depressed, and Liena felt that we must make an effort to organise some outings for him and a few of the other young people. He asked if he could celebrate his birthday in May at Mayflower with the Search Club, so we must definitely do this.
The electric wheelchair for Yura will be great, but it has lost its footplates. An attempt is being made to see if they are in the warehouse and if not if some footplates can be found or made. There is a factory in Gomel which repairs wheelchairs apparently. I have mentioned to social protection that many kids at Rechitsa need repairs to theirs.
We had a social visit to Klimovka and planned to meet at the weekend for discussions.
Social Protection When Liena and I met Alexandra Baccaras we told her about Allessia’s possible need for an operation and how she would need a lot of care after this, so it would be perfect if she could go to Rodni Kut. She
could not see any objection, so we told her about Rechitsa’s objection to losing her because the class she is in would then become too small. Alexandra said that if she was not going to move till the end of the school year – end of May – then she was sure it would be sortable for next year. She suggested that initially it should be on an informal basis, giving plenty of time to make sure Allessia would not change her mind, before making Sergei her guardian.
I asked what would happen if Alessia should become seriously ill while in Sergei’s care. Could he be blamed for something which was in no way his fault? She said as long as Allessia was admitted to hospital any time she was very poorly then there would be no problem.
I told her that I wanted to talk to Natalia at Zhuravichi about arranging to have a doctor visit once a fortnight, or maybe once a week to check on the children. And that then we would talk to the Chief Doctor at the Children’s Hospital again and if he could not do it, we would try the polyclinic in Rogachev. She said she would be delighted if we could do this and she was sure Natalia would too.
We popped in to see Sokorev, who used to be Head of Soc Prot. He seemed quite happy with his new, lower level job, and he offered to take me on my next visit to the village which is being built just off the road to Klimovka for children from Zhuravichi. I think they will probably only take the middle range kids – not those in cots or with profound disabilities, but it is a great step forward anyway. This village has been talked about for years, and now he says the first houses should be ready by the end of this year.
Rechitsa Boarding School Ivan, the Director, was busy looking after some other visitors which gave us quite a relaxed visit. It turned out that they were from the women’s prison and they were making a video letter about a lad called Sergei for his mum. They had already made one for her which they had brought for him to watch. Very impressive.
We went first to see the nurses and give them some more catheters. They really are a dreadful bunch. When you ask them a question they often cannot even be bothered to look up to reply. Sveta (the lovely
carer who looks after Allessia) has had a major row with them. Last time Allessia had a temperature Sveta told them that it was because they had not been catheterising her regularly enough.
At the moment Allessia seems quite healthy. She is taking the tablets we had been told about at the hospital, but Sveta did not know anything about the possibility if a bladder operation. We told her that we were still keen for her and Allessia to visit RK soon, after Sergei has returned from looking after his son in Minsk.
We went to see a few of the younger kids in classes and I was pleased to see that there were six in Allessia’s group, which is more than they told us last time. When we saw them all singing later, there were a total of 7 children.
Adam. The boy with no arms is doing well and loves to be photographed even though he is very serious about it. Sveta wrapped Allessia up and took her out on a sledge, so I could take some pictures for Colette and Mary.
When we saw Ivan at the end of the visit he asked if we could buy some posters for the school. They were lovely, well illustrated educational posters, but they are made in Russia, so the school is not allowed to buy them! We bought him $100 worth of posters
Palliative Care Team Olga and Irina seem to have been very busy since I last saw them. The funding crisis has stimulated them into action. Olga had talked to Slava Izhakovsky, Chief Doctor at the Children’s Regional Hospital about setting up a Palliative Care Centre in his hospital. She said he was positive about this idea so she was arranging a round table meeting at the end of May to discuss this which she wanted me to come to.
I told her I could only be there is the first half of May so she said she would rearrange it. I said that the important thing is that Anna should be there, and she agreed with this.
John Costello, who is our Palliative Care Consultant, is keen to come out some time in the spring and could have discussions with Olga to see if there is any reality in this project. If it relies on us funding it, then clearly it’s a no-go.
Irina had made some good links with a Social and Pedagogical Centre, run by Margarita who Jean and Mike both know. She discussed registering the Hospice patients with the centre so they are entitled to receive humanitarian aid from there. And she had found a businessman who was keen to give some support and had given $250 to buy presents for the mothers at New Year. The Komsomol (I didn’t know they still existed) had also given presents for children.
Denis, one of the nurses, has been letting them down on various issues and seems to have lost interest in the hospice work. So we decided that he must go, and his salary (which was only .4 of a job, should be divided between the other three as they are taking on the work he was doing.
They were very worried about one family they support. The condition of the little girl, Lisa, had deteriorated; the father had lost his job and the mother was getting support from the psychiatric hospital. I asked if short term financial support would help and they were very enthusiastic about this. So we agreed to give the family £25 a month for six months.
Diabetic Assn Maria, the doctor who has worked on the research project with George, reported on how it had gone. She said HbA1C levels were high. Children’s insulin was adjusted while they were in hospital, but this did not work once they were at home. They really need to set up Diabetes school again. There are a number of new patients now because of flu. Apparently a simple illness can be the trigger which sets off diabetes. New patients are put on Belarusian insulin
They have got lots of free glucose monitors from a company. The test strips are quite cheap so it would make sense to try to get all children on these. I asked them to talk to Barbara about whether it was better to buy stuff for them in the UK, or give them the money to buy there, as we cannot do both in the way we have in the last couple of years.
Shevel, Gomel City Director of Education
He asked about the possibility of us helping to set up the new homes for the children at Gomel Boarding school. I said we could not actually spend money on this, but if he gives us a list of needs we may be able to send some in the aid in June.
The woman responsible for all the schools took us to see the new school which was opened on January 8th. It is a big school with wide corridors, lots of space, good ramps, a lift and disabled toilets which are still waiting for the grip bars to be put in place. Very relaxed (almost unruly!) atmosphere. The kids are allowed to wear what they like; the bell for end of lessons or break is a jolly tune; and children didn’t see the need to stop scrapping on the floor when the head teacher came in! I thought all Belarusian schools were quite strict.
This school is definitely not in need of aid! They had the biggest sports hall I’ve ever seen; a multigym; a fantastic computer room; a snack shop and a superb dining room. But they do want support.
The Head and the woman from the ed dept who came with us are very keen to have help with integration. They hope to bring in a number of wheelchair kids in September and they know that they need to prepare their children and parents, and the disabled kids and their parents. They would like to twin with a school in Manchester which has integrated wheelchair kids, so I will talk to Lancasterian about this. They co-ordinate all the integration in Manchester. It would be really good to either take someone from Manchester out to Gomel this year or bring a couple of people from Gomel to the UK. It is very important to help them set off in the right direction, and they are begging for the support. Maybe if we can get a school enthused they could raise the money to send someone out and then they could invite the Director back to visit their school..
Mayflower Centre. Tanya, the nurse, told me about some of the new children and young people at the centre and we took pictures of Veronika in the hoist. This is the one which was funded by a Rotary Club in Scotland and Sue Young asked me for pictures to pass on to them. I had another discussion with Natasha about the smaller hoist which is so desperately needed for Rodni Kut, and she agreed that we could borrow it and replace it when we get something similar. Hooray!
Zhuravichi Improvements continue to be made to the fabric of the place, and when we arrived we were greeted with cut out figures of cartoon characters down the driveway. There were various beautiful displays of very imaginative craft work, mostly done by the teachers. These were all prepared in December to greet the Minister of Social Protection on a January visit. In the end the Minister could not come but one of his deputies came and was enthusiastic about the place.
Almost every child was out of a cot, even the one with very severe hydrocephalus. The carers do seem to keep improving and the nuns as always were doing a great job. We had a lovely visit to Ludmilla’s group and they were industriously sewing and doing other crafts. She is keen to have duplo and similar construction toys for those who can’t take part in the craft activities. Some of the other young adults asked us for more jigsaws. Lots of young people asked about the sanatorium but for most I said I did not know, we would have to see what was possible.
At lunch time Natalia told us that the child with profound hydrocephalus had nearly died the previous week. She had been rushed into intensive care and they had just managed to revive her. Her parents had come from Mozyr to be with her, although the father cannot bear to see her, it is just the mother who can cope. I thought it was very sad that doctors had struggled to prolong this child’s life, and asked if Natalia thought this child ever had a moment of happiness in her life. She said that she was sure that she didn’t and agreed with me that it would be better not to revive her. This led to an ethical and religious discussion which was interesting, as Ira and I are poles apart on this!
We talked again about improving the medical care, especially for the most vulnerable children and I told Natalia that Social Protection would be very happy if we could fund some extra care and that it was possible to do this officially through SCT. She was enthusiastic about the idea this time, and suggested a doctor called Oxana Moroza who she said was chief paediatric consultant at the Polyclinic in Rogachev.
We had planned a visit to the Children’s Hospital in Rogachev to talk to the Chief Doctor, but following Natalia’s suggestion we did not do this, but went straight to Rodni Kut, for a relaxing evening with the children and carers.
Rogachev Children’s Polyclinic The Families Association had told us that the woman suggested by Natalia to work at Zhuravichi was not the chief doctor. Her name was Andreeva and they said she was wonderful, so they arranged a meeting. I told this woman a little about us and our relationship to Zhuravichi and how we were looking for a paediatrician who could make regular visits, once a week if possible. She saod that she knew in her soul that the children needed this support and if we had asked her two years ago she would have done it, but now she is getting older and it would be too much for her on top of her job at the polyclinic. (Damn! We were looking for someone two years ago, but only tried the Children’s Hospital). We said that her deputy Oxana had been recommended by Natalia, so she called her in. She was not nearly so likeable, and seemed to think that checking the children out twice a year was adequate. But they both recommended a paediatrician in Dovsk which is only 20 minutes from Zhuravichi. She was phoned and she said she was interested so we arranged to meet the following Wednesday. (But subsequently she told Liena that she had thought it over and did not want to do it, so we are still no further forward)
Ira Rozhkova Ira and I went to visit a very happy Ira who had celebrated her 21st birthday a few days earlier. Just before this Andrea and Annie Thompson from Devon, who had brought Anya back to Rogachev, came to visit. I had given them cards for Ira from people who know her in England and some pretty clothes. And
then on her birthday we brought her friends who had been with her at Rechitsa to visit. Sadly Vova was not well and couldn’t come, but Luba and Vitya, two Sashas, Olya and Lilia came and they had a very jolly party according to Ira’s mum.
I continue to be amazed at what a delightful woman she is and what a superb relationship she has established with her long lost daughter. They had re-arranged Ira’s room and taken one bed away so there is now lots of space. They are planning to move the bath round and put in a shower. The door will still be too narrow but Natasha is not a bit bothered by this. Her family will do the work, and they are also planning to make a little veranda outside Ira’s room where she can sit when its warm. They have looked at showers and are planning to start the work as soon as the weather warms up. She mentioned that tiles are very expensive. I gave her $200 towards the work and said we could give her some more if they need it.
Back at Rodni Kut the children were practicing for a performance at the Centre where they will sing a song about helping Mama with her jobs around the house. Andrea (from the family who host Anya in Devon every summer and Christmas) had watched them working with their teachers the previous week and been very impressed. When I first arrived the physio and massagist were just leaving. They do get very good support and if Allessia goes to live there a teacher will come to her at home, at least at first.
Search Club. This is a get together of young people in wheelchairs who are normally stuck at home, and we collect them and bring them in to the Mayflower Centre on a Sunday. Formerly this happened every Sunday, but financial constraints at the moment have forced us to reduce this to every other Sunday. We hoep soon to make the meetings weekly again as they mean so much to the young people.
Liena and Greesha from Klimovka were there and they now love going to the club, which is great. It was Greesha’s initiative to join and Liena had to be persuaded, but she now thoroughly enjoys it.
We went into the play room to watch a Valentines Day performance. The staff and volunteers performed a short play about St Valentine and Sveta told the story. She then acted as compere for games which involved everyone. She is really good at this and kept the laughter and happy atmosphere going.
Palliative Care Team We went to visit two families. The first had been recommended by Galina Shevko and this was Olga’s first visit. We met a lovely young couple, just 28 years old, who had been struck by tragedy a few months ago. Their perfectly normal, beautiful little boy had suddenly said he felt bad and they had to rush him into hospital where he was soon in a coma. He had suffered a very sudden rise in sugar levels and lactose levels. He has been diagnosed with something like lactacidosis, which is a very rare, progressive and quickly fatal disease. The cortex of his brain has been largely destroyed.
His mum and dad have read everything they can on the internet about lactose intolerance and all the associated conditions, and they are hoping that this might be a wrong diagnosis. They were told he was the only one in the country. We have all their medical details and as soon as these are translated I will see if we can get s specialist to look at them and see if they can make any judgments from the test results and case history.
Next we visited Anya Pesenko. She had just celebrated her 19th birthday and the team had made her a wonderful T shirt from a great picture taken at her birthday party. Anya was expected to die from her brain tumour about three years ago but it seems to have stopped progressing and she is doing quite well. The parents have had quite a lot of psychological problems, probably due to the stress of her being ill for so long, and they have not wanted visitors from some time. But they are now feeling more positive about life.
After an early morning train journey I visit the Children’s Cancer Hospital at Barovliani with Evgeny Ukraintsev, Director of Children in Trouble. We met the chief doctor briefly and had a chat with Oxana, the deputy head, who was very grateful for the Thiotepa which we bought with Chernobyl Children Lifeline a few weeks ago.
We went to the transplantation department and talked with a very nice doctor with good English. She showed us the four year old girl who has just had a course of Thiotepa and then a bone marrow transplant. She is in one of the isolation boxes, but her mum is allowed to be with her! This is still only allowed for a small number of children, those under five or with additional difficulties. This little girl, Masha, is paralysed from the waist as a result of sarcoma. The doctor agreed that it would
be much better for many children to have their mums with them, but in the past the chief doctor has been firmly against this. I met the mother who said she was so pleased to have the chance to say thank you for the Thiotepa, which had made such a difference to her daughter.
This drug is in the protocol which they follow, but it is not licenced in Belarus. I asked if the doctor thought the Ministry of Health might licence it in the near future, but she doubted that very much. If children take Thiotepa before transplant then usually things go much more smoothly. They can have the transplant without but it significantly reduces the chances of success. For a large child 80 vials are needed at a cost of £2,000. A small or thin child might only need 40. So the doctors have to make hard decisions when they have not got enough Thiotepa, which is most of the time. A group of doctors meets to decide which children have very little chance anyway, which have a reasonable chance, which are so strong they might be able to better mange without, whether to give to two small children instead of one teenager. Horribly difficult decisions. Clearly this is one drug which we ought to buy when we can as it can make a crucial difference to a child’s potential for survival.
We had a chat with Larissa, one of the psychologists about some of the children I have met in the past, and Valya, who was in the hospital for checks and rehabilitation came to see us. Valya is the girl who stayed at Klimovka several times in order to improve her confidence and independence skills. She is an orphan and when she was about 14 she developed cancer, a brain tumour, I think. She had treatment for a very long time and was not expected to survive. Remarkably she came through it all, but at 19 she had the appearance and emotional development of a fourteen year old. She is now at college studying sewing and as she is an orphan a flat has been built for her in the region where her sisters live near Vitebsk. I am still not sure how she will manage on her own, unless her sisters are very supportive.
When she left us I was just asking Larissa if Valya was still not allowed to fly, when she popped back into the room to say she had forgotten to ask if there was any chance for her to have a holiday as she would so like to go abroad. We told her to find out if she was allowed to fly now, and within minutes she phoned to say that the doctors had said, yes, in principle she could. She will have to have checks later of course, as all the kids do, but hopefully she will be Ok and it would be great if she can go to Endon. She is 21 now but she will still seem younger than many of the teenagers.
Minsk Hospice Anna had sent Liena an agreement about co-operation which Liena had made some alterations to and then signed. I think the idea is just to promote closer links between all the children’s hospice teams working in the country. Anna had been invited to take part in some sort of committee which was trying to improve co-operation between Health, Social Protection and Education in the field of child care, which sounded great, although as so often with Anna I could not fully understand it.
The new respite care unit should have started work that day but there were no children in, partly because so many people have flu, but also because many mothers do not want to let their children out of their sight. A bit like the problem we had at Mayflower at first, but more so, as some of these children have major health problems. They are offering respite for young parents with children with genetic problems and the hospice is sure it would benefit the mums to have a proper break, so they will work on this, and perhaps the mothers will stay with the children the first time.
They also have two palliative care beds which the hospital will refer children to.
Anna was off to a conference in Moscow when we left. Palliative Care for children in Russia is way behind Belarus and Anna is helping to develop it.
Pedagogical University On arrival at the university I met Olya who is going to do some of the organising of the holiday for us this year. She has been at the camp for the last two years and is very enthusiastic, great with people and speaks quite good English. and she took me to see Vladimir Stepanovich who is one of the assistants to the Dean. She was away in Moscow and had said that I could not meet students while she was not there. I was quite annoyed about that and anyway wanted to tell her how displeased we were that students had been cajoled into taking part last year by offers of better accommodation at university. I told Vladimir that some of the students were great, most were Ok but a few were not at all enthusiastic and even left before the end of their 12 days. It cost us a lot of money for them to be there and this was quite unacceptable and must not happen again. Although Olga was a bit reticent about translating this it was clear that he understood English so he got the message.
I said that partly because of this and partly because of the financial crisis we would take only half the number of volunteers this time. We discussed dates which I said I would finalise within the next week. He thanked me for the opportunity for the students to take part and I said I thought it was really important as it gave them the chance to work with significantly disabled children, especially those who go to Zhuravichi.
Then Olga and Yanna (one of the other organisers last year) and I had a chat with a couple of girls who went to Zhuravichi last time, both called Nastya. They went first to Ptich and then to Zhuravichi, and one had preferred being at the camp and the other, who liked things to be more organised and disciplined, really enjoyed being at Zhuravichi. They told me how things worked there and we discussed ways to make improvements next time.
Then I went to visit Sergei (Papa Sergei from Rodni Kut) whose was with his son in hospital. Artum is a handsome 17 year old who I would not have recognised as I remember him as a cute child singing at the association. He had a four hour operation on February 2nd, which involved drilling 26 holes through the bones in his leg and then hammering metal spikes though them. He has four big wheels round his leg, from the hip to the toe, with all these spikes radiating out. It made my legs turn to jelly just to look at it. Artum has to wear this mediaeval torture contraption for the next 6 months and every week a nut is turned to stretch his legs a little more. The plan is to stretch the top half of his leg by 7cms and the lower half by 3cms. He seems to be very stoical about it. If it was me or I think I would settle for built up shoes
Back in Gomel Region, I went with Ira first to meet the chief doctor of Zhlobin Hospital and then to see the recently opened Palliative care Unit. This is a about a mile for the main hospital and is in the same block as a really excellent Rehabilitation Centre which treats patients after stroke, heart attack or serious accident. They seem to have a good success rate with helping people to restore their abilities.
The palliative care unit has twenty beds, ten on the ground floor and ten upstairs. There are currently only three patients as the unit only opened a few weeks ago and they are all very new to palliative care. The doctor, Yuri, seemed very nice and received a wonderful testimonial from an old lady who was about to be discharged to home for a while after her condition had been stabilised. She was waxing lyrical about what a superb doctor he was and how well the nurses had looked after her. The place is looking a bit basic at the moment. They will soon have some adjustable beds, but it would be great if we could get them pressure mattresses, a hoist, a few small CD players which could go in the rooms and perhaps even some nice pictures for the walls.
John Costello, our palliative care consultant, is happy to go to Belarus soon to give some training. Anna would like him in Minsk for a couple of days; then she could take him to see the new hospice in Bobrusk; he could have two days at Zhlobin and a day with our palliative care team in Gomel. We hope this will take place in late May.
Vasilovka This is a very nice home belonging to Social Protection. Part of it is for elderly people and part for your people with physical disabilities. . Lilia is a bright 20 year old who is teaching a lot of the other young people computer skills. She would love to go to college in Minsk as she knows one girl in a wheelchair who is at a college, but has a great deal of support from her sister. She is thinking she could perhaps do a correspondence course.
Vova was upset to have missed the visit to Ira,. But was actually much more upset about the fact that he had recently been ill twice with kidney infections and he was saying could I do something to stop him being ill. Aleg has done a urodynamic test for him, but I think decided Vova was not bright enough to self catheterise. This is a nonsense, I’m sure. He is so motivated to do it. For years he has been telling us that he is embarrassed by using pampers as there are never enough and they leak and make him smell which is very antisocial.
The other Vova, a heavy young man in a wheelchair had been very upset at the sanatorium, partly because his wheelchair was too heavy to manoevre, so I was delighted to see that he was in a lovely new wheelchair which he was very happy with and to be told that his mum had bought him a mobile phone so they can keep in touch.
There was time for one last visit before heading off to Kiev and we went to the Baby Home. We saw three groups of kids and they all seemed very happy and busy. The carers were very loving and very active with the kids and one of the nicest moments was one little boy looking at the pictures of his new mum and dad.