The group who came out for a one week visit from November 12th to 19th were:
Jan Baxter. Co-ordinator of the Newark and Retford Group. Only joined the charity at the beginning of this year but has done a great job raising lots of funds and co-ordinating a visit of young children and mothers this Summer.
Sue Williams. Joint Co-ordinator of Aberystwyth Group. Has been involved with the group for about 8 years, whilst they have hosted young teenagers and this year, their first group of 18 year olds.
Jasmine Killim. Organiser of Manchester medical students CCP group. Has been to the sanatorium as a volunteer four times and has co-ordinated the participation of many other students from Manchester.
Mai Chatham. A member of our Littleborough Group, now West Pennine, since the launch of the charity, Mai has been checking our host families for the group since the beginning and has just become Co-ordinator
Marion Stoddard. Joined the Merseyside group last year and soon became its most active fund raiser. Marion has just taken over as Co-ordinator of the group.
Pat Marsh, Manager of Woodlands Respite Care Centre in South Manchester, spent a week in Gomel from November 5th to 12th. This was Pat’s third visit to Belarus and several members of the Mayflower staff have been to UK and spent time at Woodlands.
In the early part of the week Pat visited Mayflower families, potential families, plus Klimovka and the Search Club, (young adults in wheelchairs who meet at Klimovka every Sunday) and had many discussion with Natasha and staff.
I arrived on Wednesday bringing a hoist (which was not easy and caused great consternation at Minsk Airport. They had no idea what it was, even when an interpreter tried to explain it to them. Eventually they asked if I had any alcohol and when I assured them not, they waved me through without looking at my luggage at all)
I went to Zhuravichi with Pat on the first Thursday and then again early the following week with the group. During Pat’s visit the main focus was cot children and how they could be better fed. Pat tried to show the staff how to prop them up so they could be fed more safely and effectively. Many of the children could be fed in push chairs instead of in bed. Not sure how much they listened, so follow up work needs to be done. We are now sponsoring one extra carer whose main job is to make sure children are fed as well as possible. She seemed quite nice and Pat spent some time with her.
With Pat and the group we visited the teenagers and young adults who are getting the least input of any kind. Ludmilla, who we sponsor, is doing a good job with some of the young adults who have never had any teaching throughout their lives. But there are many others, and younger teenagers who are being looked after in large groups with one or two carers. One group had nice carers who were trying to do some singing and simple activities with them. The other had carers who seemed fairly indifferent to them. But it is a very hard job to spend long shifts with such young people, especially when the staff have no training and are not given any resources.
Sveta Chernenkova (who we employ to do early intervention work in Rogachev, and also works as a ‘defectologist’ for the education department) has agreed to go to Zhuravichi to give some advice about working with these most mentally disabled children and young people
Since the Educational visit to Britain which we organised in October for Natalia, Director of Zhuravichi, and Nadezhda, Deputy head of school No 5:
Nadezhda and four of her staff have been to visit Zhuravichi
Natalia and a group of teachers and carers from her school have been to No 5, Abandoned Babies and Mayflower
It has been agreed that this will be further followed up by teachers from Z spending a few days at No 5; cot carers from Z spending time at the Baby Home; and I arranged that Tatiana, chief carer at Abandoned Babies and their best doctor would go to Z to look at the care of cot children.
Further action planned:
We have a new carer who seems to be very good. Ira is doing well at school. This Christmas she is in Britain for an appointment for her cleft palate and a check on her legs. Anya also came for a few weeks at Christmas so that she could practise walking which she does not seem to do much of at Rogachev.
Nazar came for just a couple of weeks for a holiday. Anton and Stas stayed at home.
Pat gave the staff some training using a hoist so one of those which went out on the November convoy will go to Rodni Kut.
Pat and I spent half a day at MF with Pat discussing shifts. Pat would have liked Natasha to change the shift pattern so that the staff were not in pairs as this creates greater flexibility. Natasha not keen to do this as she says they have worked like this for a long time and everyone is happy, so she doesn’t want to destroy the team spirit.
It was decided that she could cope with one less carer – as we agreed at our last meeting of the Trustees – if Liena the cook changed her shifts so that Luba, (the carer who has some cooking qualification) prepares breakfast and Liena is there to make lunch and evening meal. Luba will then be one of the carers during the morning shift every day and will be taken off the night shift rota.
Pat explained to Ira that at Woodlands when they are short staffed then either she or her deputy have to replace a missing carer, but I don’t think this is the way things are generally done in Belarus.
Pat trained all the carers in the use of the hoist, which they were delighted with, and also did a training session on the Saturday on other issues the carers had asked for.
Olga, the Head of the Social services Centre where Mayflower is based, said that she had put requests in to the local budget and the Energy saving committee for replacement of windows and was waiting to hear. She needs to prepare a project (Vast amounts of paperwork) about this, and has asked us to borrow $450 which she can replace by buying something next year which we might otherwise have had to buy.
She was not very hopeful about the likely outcome of the work being carried out by the Social Protection Ministry to create a proper legal basis for 24 hour respite care centres. It was obvious from my last visit to the Ministry that they are not hurrying to complete this, but most worrying perhaps is that they are likely to come up with very low numbers of staff and poor quality of staff too, making it impossible for any more MF type centres to be set up on similar lines, and meaning that Mayflower itself will either have to be seriously downgraded or we may have to go on paying indefinitely to keep it at a good standard.
This is a place which used to be a sanatorium or holiday camp. It has recently been taken over by Social Protection. There are about 100 elderly people living there who also seem quite contented. Some of the space is reserved for holidays for older people, and there is a separate block for the young people, where 20 spaces will be reserved for holidays for other young people from institutions.
It is a beautiful environment with a lake close by; the buildings are all in good condition and tastefully decorated; the Director is delightful and all the staff are very professional, educated and caring, so different from most of the other institutions. All the young people were very excited to see us and show us round. Their bedrooms are beautiful; there is a well stocked library which they can spend as much time in as they like; a first class medical block; a dining room which would look good in any Belarusian restaurant; a smaller room for holding birthday parties; a big disco hall, where the Librarian doubles up as a dance teacher, and young people who need crutches to walk learn to do slow dances together.
We had a very moving visit here. After looking round we all went to the hall where the ex Duyanovka young people put on a concert for us. I once asked them at Duyanovka to see if they could put on a little concert for my next visit, just to give them something to do and work together on. But when I came the next time they said they were sorry but they just couldn’t do it, they had no talent. Now, with the help of a lovely woman who has convinced them all that they are talented, they sang, recited poems and danced. The atmosphere was wonderful, and then they presented me with an early Birthday present and made me join in with some really wild disco dancing.
After this we went upstairs to the small dining area where the Vasilovka young people sat opposite us and we were joined by young people from Duyanovka (who we had sent Alexei off to fetch as soon as we arrived) and a group of ten young people with learning difficulties from Zhuravichi who were there for a 24 day sanatorium holiday. The Director was very much in the background as all the young people chatted over tea and cakes and the atmosphere was so happy and relaxed. The contrast with Vikov which the group had visited a couple of days earlier was in all their minds. As if we had not already had enough emotion to cope with the Vasilovka young people then told us – after all the others had gone – their life histories. They must have given this deep thought because not one of them faltered or cried while telling us how they had been ‘thrown away at birth’ or ‘dumped in a hospital at age 12 by an alcoholic mother’ and then most of them had been from one grim institution to another. The miracle is that they all seem such balanced positive young adults now. And they could not be in a better environment to help them to develop and catch up on some of the experiences they have missed.
They proudly showed us the room they want to turn into a kitchen where they had the pottery on display which had come from the British Embassy. So at the end of our get together we were able to give them a kettle, a toaster and a microwave (Mai had struggled through customs with this and cursed it, but did not curse it anymore when she saw the joy it evoked.) And I promised to buy them a fridge, which will have to come from SCT bank account).
The group also visited the Mayflower Centre, Abandoned Babies Home, Diabetic Association, Cerebral Palsy Association, School No 5 (which they loved) and Vikov (which they found very hard
When I met Alexandra and Valentina at Regional Social Protection, I asked if Liena, Pasha and Galia – who go to the sanatorium every summer – might be moved from Vikov to Duyanovka. If this were to happen I think we should probably give up on trying to teach at Vikov and ask the two women there if they could work at Zhuravichi instead. We could probably make more of a difference to more young people there. We will have to wait and see what happens.
In Minsk we had a wonderful visit to the Children’s Cancer Hospital at Barovlyani where we saw lots of little kids 2 – 5 years old, making cards round the table we bought for them last year, all attached to their drip stands. Then we met some mums who told us some of their stories. One who has four children of her own and five adopted children, and now two of her own kids have cancer; a woman from Azerbajhan who begged us to help as she thought her money would run out soon and her son’s treatment would finish (we will monitor this, the psychologist seemed confident that money would come from her government) a young mum whose baby was diagnosed with cancer at just 2 weeks; Denis, who stayed in Glossop last year and has now had a relapse; a five year old who lay in bed with her sad mother beside her and who seemed to have almost no chance of survival. Then we went to meet some of the older kids, who told us about some of the outings which Ira had organised for them – to the circus or the cinema, and ending up at Macdonalds.
And finally we sat in the office of the Psycholgist who is organising the poetry book which we have helped to sponsor. The team knew all about it as Olga, the Hospice doctor in Gomel had read them a poem from it by a boy who died recently in the care of Gomel Hospice team. The psychiatrist played us a song sung by a 19 year old boy who had died recently. He had been a very bright lad with a great future ahead of him and many people at the hospital were obviously going to miss him, including Ira who had got to know him quite well. He had a lovely voice and a pop band had helped him to make a CD as a memory for his family, but perhaps later it could be sold to raise funds for the hospital. Larissa talked to us about the work of the psychologists in the hospital and then we went to have a look at the transplant department. This felt very intrusive. You go down a corridor where the patients are sitting on their bed in little box like rooms, talking to parents on a phone, and the parents are standing in the corridor. It feels very voyeuristic to see people going through such a hard time, especially when you see little children who obviously cannot understand why mum is not allowed to come in and hug them. I have been before to visit someone and talk to her on the phone. That is also hard but feels a little more justifiable, so we got out of there quite quickly.
The other visit in Minsk for the group – besides a trip to the opera which they loved – was to the Hospice. Anna was full of plans to set up a kind of transitional unit, like the one she has seen in Manchester, for babies who are dependent on machinery to keep them alive. The parents would be taught how to use it and eventually allowed home. This has come about because of a combination of more babies being born with genetic disorders and better technology allowing more of them to survive.
Then she showed us round the hospice and talked about their work and some of the children they had cared for and lost. In the little chapel at the top of the building there is a memory board on the wall with pictures of all the children who have died and on the window decals of angels made by mothers, each representing their own child.
On a jollier note we had a wonderful meeting on the Saturday afternoon with all the 18 year olds who went to Aberystwyth in the Summer, some of Littleborough’s children and a mother and child who went to Newark this year. Ira had managed to arrange for Ternichka to do a concert for us all, and she kept this secret till the last minute.
The group flew home on Sunday very happy, if a little emotionally exhausted by such a roller coaster of experiences. I am sure they and their groups will all benefit from the visit.