During the first week of the visit I was accompanied by Nicola Thomson and Linda Lloyd from Rodney House School (they teach the children there with the most serious multiple disabilities) Diana Jellinek (a consultant neuro-developmental paediatrician from Manchester) and Mary White (a specialist nurse who works with people with spina bidida and hydrocephalus and helps children and young people to manage incontinence problems)
Nicola and Linda had received gift aided donations of £900 to cover the costs of the visit. And Mary is now busy acquiring specialist catheters and other materials which will be of great benefit for the future.
Had some very happy visits here with the group. Rodney House school is very supportive of Rodni Kut, and the staff have met Nazar on a number of occasions when he comes at Christmas.
Nazar has never succeeded in using a toilet. Having spent his first nine years lying down and using a nappy at Zhuravichi, he did not seem able to change. This Christmas Helen and I realized that he might be able to use a bottle, but when they suggested this to him at RK he refused to try. Mary brought a ‘magic bottle’ – just like a large film canister but with an expanding balloon inside it. Nazar is now using this every day and is really pleased with himself. When I spoke to him last weekend, he had not had a single accident for nearly a week! This will make a big difference to his life, and be a huge help to the carers too.
We now have permission to build the 12 metre extension at Rodni Kut which is what we wanted in the first place! In November officials from the local executive committee said it was quite impossible to give permission for a building to be less than three metres from the fence. Now they are saying we can go to within one metre! So David will be in Belarus from April 20th to have some meetings with the building and architects departments, and with Sergei and the people he is suggesting might do the work. We hope that permission can be secured in May or June and work can start, so that it is completed by September.
The Building Department at the Executive Committee are suggesting that the cost will be about $40,000. We are hoping it will be les than this, but will ask the Totnes Group to go for a goal of £20,000 to cover the costs of the work.
The visiting group were very impressed by the happy atmosphere at Klimovka. Liena was looking healthy and was outgoing enough to sing a Karioke song for us and Greesha gave everyone a massage. He tried hard to get me to tell Galia that when he doesn’t want to read, she shouldn’t make him but I didn’t fall for that one. When I went back a week later with Jean the carers said he had been trying much harder at his reading.
Anya was still there, despite the fact that Mags and I in November, and then Jean in January, had all said that she ought to leave by the end of March. She has been staying at Klimovka all the time. Jean told Galia that she needed to prepare a programme to gradually move Anya out over a period of the next four or five weeks. One boy from Rechitsa, Vasily, will definitely come to Klimovka at the end of May. We had been thinking of taking a boy called Denis as the second. Ivan, the stroppy director, at Rechitsa, proposed to us another young man, who had never been mentioned to us before. This boy Vitalec, seems to be more suitable for Klimovka, and Denis is saying he would rather go to Vasilovka anyway. Jean felt that the whole process was too quick, so perhaps this is something we need to discuss. Vitaly and Vasya will visit Klimovka some time in the next couple of weeks and we’ll see how they get on.
Rechitsa Boarding School
Had a very strange visit here with the teaching/medical group. We had not been told that it was a special day celebrating the success of the trade union at the school (rather different from the trade union activity we are used to) There were visitors from other schools there and when we arrived a concert was about to start. It was nice to hear some Belarusian singing and see national dress, but rather odd that it was mostly the teachers performing. The teachers who spoke with Nicola and Linda gave the impression that they work in pretty much the same way, but it seemed that in some cases they were just saying what they thought was expected of them. They certainly did not wish to interact with the visitors when they got the chance later. Mary had a more useful time with the medical staff, discussing the needs of some of the children. Vova in particular (Ira’s best friend) is in need of urodynamic testing, so he will be one of the first people to try out the new equipment at the end of May. After this he may be able to have a catheter. Shortage of pampers was a desperate situation again at Rechitsa ( I hope they were due for a large consignment from the current aid, but could not really clarify whether this was the case). If some of the children could have catheters and use less pampers it would be such a great help.
Had a chat with Allessia on both visits – with the group and with Jean – about her forthcoming operation. She ought not to have been told until the permissions have all been granted but she was asking if she would be able to walk after the op. All her friends were asking this too. I was worried that she would be upset when I explained that she wouldn’t, but she seemed fine. Happy to hear that the lump would be taken off her back and that she should be much healthier after the operation. Anatoli at the Regionl Hospital says that the permission of the Ministry of Health is not needed if we are paying for everything (don’t quite understand this as I can’t imagine anyone offering an operation abroad and then saying the Belarusian Government would have to pay for it). I have just had confirmation from Alder Hey that Allessia can come in June and that it we can send a neurosurgeon with her.
Ira at Rechitsa. She is no longer saying that she is going back to her parents, but that she is going to Vasilovka, and she seems happy about it. Liena and I met Alexandra and Valentina at Social Protection and then had a meeting with Valentina, the Director at Vasilovka. We talked about providing the funding for carers so that disabled young people who needed more support than the current residents could live there. We were asked by Social Protection not to talk specifically about Ira which I found very difficult to accept, but Valentina knew anyway who we had in mind. She was not resistant to the idea this time and she will think about possible suitable people to work in this role.
The work is being done on the floor in the bedroom which got so damp. Two trainers from Manchester were at the Mayflower last week, and hopefully they have helped to select some significantly disabled young adults to stay at MF as well as the children they can still take. Sue Young in Scotland has found a Rotary club who will raise funds to buy them a new hoist. Shocked to find that the small hoist which should have gone to Rodni Kut over a year ago was stashed away in the MF store cupboard!
Diana and Mary had consultations with half a dozen parents and their children at MF. During part of this time Nicola and Linda entertained 13 year old Ilya. He has spent a great deal of time in the psychiatric hospital and has tried to kill himself a couple of times. The poor boy has severe epilepsy and a number of other health conditions. He is over protected by him mum, taught at home and has very few friends. They are frightened to take him at Mayflower because of his epilepsy, so I asked if he and his mother would like a holiday at a sanatorium. They were both delighted at this idea so SCT will organise a 12 day holiday for them some time in the next few weeks. I also promised that by May we would get him a computer. So he either needs one on the next convoy, or I could take a laptop out when I go in late May. I am sure there must be lots of people who are upgrading their laptops and we could take their three or four year old computers for children at the cancer hospital or kids like Ilya.
Vikov Adult Home
‘Our’ class is lovely and the teachers from Manchester enjoyed working with our teachers there and sharing ideas. But Diana, Mary and I with Ira explored other parts of the corridor and had a very sad visit.
We started by visiting Yura, who I had talked to last time about a sanatorium holiday. He was desperately trying to tell me something and the nurse did nto want to listen. We eventually deciphered that his mum wants to come to the sanatorium with him. So we need to fund a 12 day holiday for Yura, Marina who shares his room and is always with him, his mum and a carer as well I think.
We then went to visit two brothers of 24 and 26 who had only recently moved from Zhuravichi. Dima and Sasha don’t look a day over 8 and 10 and they lie in their beds with nothing to do, see or listen to.
We asked about washing and how they managed without using a hoist. The nurse assured us that it was no problem. They bathed all the residents every morning. Then when we went to see the bathroom, there was one room with a bath propped up on bricks, and another next door which seemed to have two baths in it, was locked. Oh, that is only opened on a Thursday when the bath woman comes, we were told. Hmm! So much for bathing every day.
A bit later we asked if we could see the showers, and they were pointed out to us in another block which they can take people to in the summer.
When we asked to see some more people they took us to see Sveta. She was sitting on a grubby bed with her thick tights rolled half way down her legs, and she rocked and cried as she recited poems to us, and told us how unhappy she was. She is just 52.
If Sveta was the resident they were happy for us to see, how bad must the situation be for others, we wondered. We came to a room which was bolted shut and asked about it. Isolation room, we were told, and the nurse tried to move on. But we said we would really like to have a look, so she reluctantly came back and said it was a room where they put people who are difficult. When she opened the door a little skinny lady bounced out, grinning.
It was a large room, completely devoid of any furniture or decoration. One young man had weed on the bare boards, others were huddled in corners and against the radiator. One old lady in a wheelchair had a pot underneath which she had used with all the other people around her. When I asked her how long she had lived there she started to cry. Two of the young people who sometimes take part in the classes were in there too.
We tried not to show too much horror and disgust, and a few days later I went on a short visit to see the Director. I said we would like to do something to make this room nice – paintings on the walls, a high shelf where a CD player could be, comfortable wipe clean furniture, and perhaps a partition so that part of the room could be for the class and part a day centre. Antonina started going on about putting in plastic paneling and a tiled floor. I said that we would not be able to spend a lot of money on it, just enough to make it bright and comfortable. She is going to have a think about what she thinks should be done and we can do the same. Perhaps David can go and have a look at it.
Tatiana, the Director of the Home, was very happy for us to spend time in the building where the older children live, but was not so keen for us to go to the other building with the babies and children with disabilities. I had to gently insist that it would be a real pity not to as we had so many specialists in the group who worked with very profoundly disabled children. We were taken round the second unit by a doctor, who insisted that they do not have any babies now with hydrocephalus. When I asked her about the two children who had recently moved to Zhuravichi with terribly severe hydrocephalus, she acted as though she was not sure who I meant and asked what their surnames were! I told her that they both had heads almost as wide as the cot, which surely should make them memorable. It would seem very strange if they really don’t have any at all now. They do have one child who has had a shunt but I think it unlikely that shunts have become so common, and so effective over the last few years that they would not have any children with this condition now.
The doctor was quite obsessed with Adam, the little boy who has no arms at all and only very small legs. I did not think it would be possible for him to be able to walk but he is so determined that in the last month or so he has started to, sometimes pushing a truck along, and sometimes unaided. He does have some bad falls though, so perhaps we could get him a helmet of the type children with severe fits wear. He is the pet of all the staff and this month he will be four and will have to move to Rechitsa. He won’t get nearly so much attention there and will find it hard to adjust. We asked how the transfer would be managed and were told that someone would go with him and stay for an hour or two to settle him in!
I was amazed to be welcomed at Zhuravichi by a woman I had never seen before. I knew that Natasha, who has been director for the last couple of years, was on pregnancy leave, but I thought Raisa would be in charge again in her absence. But Social Protection have decided that Natasha is not ready to be Director on her own when Raisa retires in the near future, and they have appointed a new Director. Natalia is a maths teacher by training and has been head of a small school and member of Zhuravichi District Executive Committee. She had been in her new post for three days when we arrived.
As if it was not bad enough for her having a bunch of foreigners visit so soon, when we went back on the Tuesday we clashed with not only a visit of bigwigs from Gomel Regional Social Protection department but also an all day sanitary inspection!
Nicola and Linda observed a number of classes and then spent some time working with a teacher with a group of autistic children. They shared some of their materials and ideas, but were generally very impressed with the way she was coping with a very difficult group of children. In another class, with less challenging children, the staff were disappointingly uninterested in both their visitors and their children. This is quite unusual at Zhuravichi now. Many of the teachers are trying really hard to teach the kids as best they can, and there has been some good professional input from the diagnostic centre in Rogachev.
In the cot rooms most of the children were out of the cots and in the playroom next door on mats or in chairs. When it came to lunch time Diana was particularly keen to see the children who were to be tube fed. I think there were just four children with nasal tubes. They are not fed special nutrition but liquidized food, whatever the other children are having, and this has to go through very narrow nasal tubes. Diana had hoped to see how the food was prepared but it was impossible to go in the kitchen as the sanitary inspectors were in there. We were told that the cot children’s food would come at exactly 12.30, but it only turned up at 2.15, because of these wretched inspectors spending so long in the kitchen. In one of the cot rooms Nicola, Linda, Ira and I all helped to feed the children. But even so, the staff who were feeding them at the same time were shovelling the food down too fast. If they had not had our help, it is awful to think how fast the children must be fed. One little girl was so stressed by spoon feeding that she was having lots of small seizures. Diana was very concerned about her and strongly recommended that she be fitted with a nasal feeding tube as soon as possible. Ideally the children would have gastrostomies.
Diana and Mary spent some time with a poor little girl with extremely severe hydrocephalus who has very bad pressure sores on both sides of her head. I had brought some really good dressings which John Costello, our palliative care consultant, had acquired for us, and they applied these and told the nurse how to look after the sores more effectively.
We visited some of the older children with severe learning difficulties and the young adults who are taught by Ludmilla, the first person we sponsored at Zhuravichi. She does a fantastic job with them, but was asking if we could think about sponsoring another half time carer to help in the afternoons when she is not with them and there is just one carer to look after about twenty young people.
When we sat down with Natalia and Raisa for a meal, we discussed the sanatorium holiday. Natasha had agreed last time that we could bring a group of UK and Belarusian volunteers to Zhuravichi for a week while the other children are at Ptich. And also that we could bring a larger group of learning disability nurses at the beginning of September to work with the children and staff. But the new Director and Raisa were very dubious about both these arrangements. They were not sure what would be possible, what would be legal and generally looked quite alarmed about the whole thing. I have spoken to Valentina at Social Protection and Liena will speak to her again soon, and hope that she can sort out the legal and practical issues.
Just before the end of the visit, I took Anatoli, Director of the Regional Hospital out for a meal with Yuri, one of his deputies, who used to be in charge of health care in Rogachev district. We spent some time talking about how the health care at Zhuravichi can be improved. I told them about the children with very severe hydrocephalus, and they said that babies are now having shunts fitted so this should not happen in future. We talked about the feeding problems, and I mentioned that the ideal thing would be to fit gastrostomies when this becomes possible. Aantoli said,’ We can do this now. It is an easy operation!’ I said that I knew it was relatively easy, but I had never seen a child in Gomel with one. He assured me it was not a problem and promised to do this for some of the children at Zhuravichi. He even said they can get liquid nutrition for them, so we will see what happens. I will ask Ira to ring him this week to confirm if they have arranged for any of the children to come into hospital yet for the operation. I asked if they had the gastrostomy sets needed for feeding the children, and he was rather vague about that, so we may need to provide them. I had another go at how we can get rid of the dreadful doctor from Zhuravichi hospital who is supposed to look after the children. But it seems no-one wants to be responsible for him and they all accept that it is not possible to have a decent doctor based in a village area.
At Anatoly’s suggestion I will write to the Director of Health and ask if a paediatrician from a hospital in Rogachev could visit Zhuravichi at least once a month to spend a day looking at the health needs of the children, and we will pay for the fuel. He thinks this might work.
Anatoli is over the moon about this. A professor in Minsk has wanted to introduce these machines for some time, but the officials were not interested. If Anatoli can show how useful they are, then maybe they will be purchased for all the major cities. Malcolm, the urologist, and a technician, go out at the end of May to set everything up.
There are so many strange anomalies in the system. I was accosted by the carers we pay at Zhuravichi, asking why they only get 30 days holiday. I said I understood the norm now was 24 days for everyone and we had added a few days to that. But it seems that ‘Nyanichki’ working alongside the people we are funding are earning 40% more than they are and still getting 56 days holiday. According to Valentina at Soc Prot, a low level carer in a boarding institution can earn more than a highly qualified manager of a centre in Gomel. And some jobs still have the long holidays, while others, very similar, do not. Had a meeting with the office staff at which the only topic was salaries. They pointed out that, unlike people on shifts, they could only do one job; that prices have risen dramatically in the last few months; the official average salary is $330, and that they often work very long and unsocial hours for no extra pay. I think we will have to have quite a major review in April. Liena was very upset that we did not review salaries in March and said it made people feel very uncertain about the future.
School No. 5
Unfortunately it was a school holiday so the Rodney House group could not see the children but all the staff were in and a few little kids in the pre school group. They could tell immediately what a good school it was from the atmosphere which comes from Oleg, the Director, through all his staff – friendly, positive, caring and always open to new ideas. Although our group of wheelchair kids were not there, the room itself is lovely with so much going on it it and they heard about how the teacher and carers work with the children.
This little three year old boy was not supposed to stand on his feet without support. Some specialists had told his mother that it was really bad for him and someone must always support his hips when he tries to walk. But Diana, as a neurodevelopmental paediatrician said that this was absolutely not the right advice and he ought to walk as much as he wants to.
I made a brief visit to the hospital on my own, mostly to find out more about Ilya, and then a further visit with Jean to talk to the Chief Doctor and Tatiana, Head of the Children’s Department, about their forthcoming visit.
Tatiana was over the moon about the training which had been given just a week earlier by am psychiatrist and psychologist from Yorkshire. She wants lots more of it. Suicides and attempted suicide by children and teenagers, seems to be their main concern.
I had a few minutes to have a look around and meet a few of the kids. As always, it was really hard to fathom why some of them were there. And when you ask you get strange answers like ‘learning difficulties’
Marina and I spent a lovely Sunday morning in Gomel Park with the Search Club. We went to the Winter Garden and then we bought them all a hot dog at a little café which they seemed to think was a great treat. You will see all the bottles on the table but none of the young people would touch a drop. I am sure on days when they are going out they do not drink anything from the moment they get up till they get home again, which might be six hours as they have to be collected in several shifts. There are no disabled accessible toilets in public places. So we could solve this problem, for the young men at least, by giving each of them one of the ‘magic bottles’ like the one Nazar has. Mary has just acquired a dozen of these which I will take for them on my next visit.
Children in Trouble
I had meetings with Elena and Ira about the Recuperative holidays and we worked out the interpreters for the visit. Ira had told me that Evgeny had some strange plan involving using the coach and he wanted to tell me about it.
He has had discussions with the Department for Humanitarian Affairs and various other government departments and has been told that he can set up a company, linked to Children in Trouble, so that he can make money to keep CiT going. He said he did not want to keep looking foreign friends like me in the eye and begging for money. They will use the coach commercially (yes, that’s the one we nearly scrapped and John said they should get rid of immediately) and they have someone who wants to run the company and a driver. I pointed out that you could not really run a coach company with one coach as the first time it breaks down when someone has an important booking they will be in trouble. Evgeny said they realized that the coach was not enough so they also wanted to make products from wood. He has a friend – I think the one he was talking about heading the new company – who has a small company which produces crafts from wood. Very high quality he said, but they wanted to improve what they do by buying some special equipment. I believe the cost is $12,500! He is wanting someone to help to buy this equipment. Would it not be better to ask for funds for CiT, I asked, and Evgeny said that he would then have to ask again and again, and the company would make what they need for the future. I tried not to show my total scepticism and said that I would report the idea to the Trustees.
A few years ago the Rogachev Association tried to do the same thing and we discouraged it feelling that they would devote too much of their time to making money instead of supporting kids, and that it would cause legal problems for them as a voluntary organization. I feel even more strongly that Evgeny is barking up totally the wrong tree and will be amazed if he finds a charity which wants to back the idea
At the Children’s Cancer Hospital with Ira I met:
This man with his youngest child. The family have five children and one of the older children has already died of cancer. He came to thank me for some money I left last time to support the family.
This 13 year old boy with his very anxious grandma. I hope he will come for a holiday next Summer.
Four year old Vlad who is not going to survive. He ought to go to the hospice but his mum is insisting on him having a further course of chemotherapy when the doctors know it will do no good.
When one of the psychologists came to see us, she said that a child had just died 40 minutes ago and another little boy –who came with him mum to Evesham and Crewe two years ago – was in intensive care and would not last many more hours.
This little girl was doing well with her treatment and her mum seemed very positive. I hope they will come for a holiday next year, but could not ask them as they were in the same room as Vlad and his mother.
Anya spends much of her time in the office of one of the psychologists. She is the child who witnessed her mother being murdered by her father and is now officially in the care of an aunt with a drunken husband. All are very worried about her future, and will be talking to local social services to make sure that Anya gets proper care or is taken away to safety when she eventually goes back home.
This young man lost his left leg to cancer as a small child. He went to a clinic in Germany to have a prosthetic leg fitted and then went back a few times for replacements. But three years ago it became impossible to go to Germany and he has been without a prosthetic leg all this time. Now he has cancer in the bone in his right leg. I asked his dad why they had not had a leg made in Minsk and he was scornful about how poor the legs were in Minsk and that it took so long to make them that the child had grown by the time they were ready. I asked if he had been to the centre recently and he said that they were there last year.
It sounds strange as the man who came to the mobility centre in Exeter for a week seems to be very capable and was confident that he could make legs for Ira. Apparently he is the only specialist they have and can’t keep up with demand. I think we need to find out more about this.
I had brought a laptop, the one Keymed gave me a few years ago. It was for a girl I met on the last visit, but she had been given one, so I gave it to this boy, who seemed remarkably cheerful considering his predicament. He expects to be in a wheelchair soon.
This boy lives in an orphanage. The nurse adores him and would like to adopt him but she only has a small flat and two children of her own.
I was visited in the psychologist’s office by a mother who was very tearful about her 15 year old son. She said that he would be able to have a stem cell transplant from her when he gets rid of the fungal infection he has. He needs an expensive drug every day and the hospital would have some more of it next week but the doctors had said it was important not to stop the treatment. She could get some medicines from Moscow if she had the money. As we have not been able to buy and meds in UK recently, I though tit was a reasonable thing to do, and gave the psychologist $1,400. But it later turned out that the doctors were able to get some more of the medication the next day. Ira now has this sum of money. Can she keep the $1,400 for the next time there is an urgent need for medicines which can be bought in Russia?