However, at last the rain has stopped, there are bright blue skies and a pleasant twenty degrees plus during the day. Its early morning and the day begins with me standing outside my hut in a washing up bowl treading my washing, while I take a phone call from Mamello. This confirms a meeting on Sunday with some of the parents of the new children I have been working with this week.
After that I take a walk following the stream, passing at least a dozen ladies washing all the laundry for the centre. Lower down I find a place to play my flute, do some photography, and take a swim in a small pool by a waterfall underneath a willow tree. It’s been a busy week and it’s good to be able to stop and reflect on events and the changes that have been made since I started here in the bare corner of a hut in 2016.
The physio room with the attached dormitory block works quite differently to how I used to run the physio sessions. Previously the children had to be collected from their various houses to do physio, now they just crawl or stagger from the bedroom up the adjoining ramp. This means the logistics of gathering and returning children from physio are a lot easier but at the same time there is little control about who is in the room.
I have Teboho hanging onto my leg demanding my undivided attention, Bokang staring adoringly at me whilst endlessly repeating my name, Kolosoa always up to some mischief, usually dangerous, while the rest need noses wiping, trousers pulling up, taking in and out of standing frames, taking for a walk, or help using the therapy balls, wall bars and parallel bars. With sixteen of them it can be testing even with Malineo’s help. Sometimes there are other helpers around, but their presence is not always consistent.
As well as the children in the physio house there are many other children with complex disabilities and swallowing difficulties in the rest of the centre that need to be seen. I am the only person with any medical knowledge on site and I must be realistic about what can be done and the likely hood of the house mothers following up any treatment I suggest.
It was one of the reasons I burst out laughing when at a meeting a few days ago when a member of the consultancy team, hired to highlight strengths, weaknesses and the way forward at Phelisanong, suggested I should be recruited as an ambassador and fund raiser for Phelisanong. Like I haven’t got enough to do trying to organise the physiotherapy here and a paid job with the NHS I need to go back to and earn some money to live.
The consultancy team recruited by Phelisanong were ex Sentebale personal, the main children’s charity in Lesotho, headed up by Prince Harry and Prince Seeiso. When Prince Harry wants to fund raise he gathers his rich friends and has a polo match, probably bringing in a cool million. My fund raising has been focused around doing some talks, some kind donations from friends and busking on the street corner bringing in some hundreds, which has at least got the last two loads of physio equipment to Lesotho.
Most of the consultant’s report was in Sesotho but I was able to gather the main points which were given in English. Phelisanong was given top marks for providing a sanctuary for vulnerable children, the only centre in Lesotho which takes children with both physical and intellectual disabilities, autism, numerous orphans, albino children and children with HIV. Therein lies its great problem, there are too many children that need help and not enough resources to go around.
The government provides some bursary’s for students but doesn’t even pay for the teachers at the school. The centre leads a tenuous financial existence, reliant on a few NGO organisations and occasional gifts from private donors. The consultancy team bring to attention weaknesses in the quality of care and poorly trained staff. I agree with them but also there is no point in training staff if they can’t be retained. There is high turnover of staff here, particularly the care mothers. Apart from the consistency the physio assistant, Malineo, has provided, every time I come back here there are new care mothers. Any basic training I have done, like hand washing, must start all over again. Where to find enough money to pay the care mothers a wage which would retain their services seems to be an impossible ask, especially with cut backs from main donors like Sentebale.
I tentatively suggest that every care mother should take part in some basic training when she starts. It’s known as mandatory training in the NHS, and infection control would be a great place to start. With the overcrowding in the children’s accommodation, people eating with their hands, coupled with the lack of hand washing and incontinent children, the situation is ripe for any germ to spread like wildfire. More money is desperately needed to pay and retain staff, once they have been trained, but I don’t think me busking on a street corner will cut the mustard.
Sunday’s meeting with the parents is protracted in the glorious way that meetings are here. Everyone is dressed in their Sunday finest, wearing brightly pattern garments with plenty of glitz. I am feeling very drab in my physio polo shirt and blue skirt sitting on a raised stage opposite Mamello and Mamojoan. Mamello’s speech goes on for over an hour in Sesotho. I haven’t a clue what she’s saying but there is lots of nodding from the audience and murmurs of agreement. My speech is ten minutes and translated by Mamello. I try to explain to the parents what physiotherapy is and the importance of carrying on the physio at home. Here is an excerpt of that speech
“Physiotherapy is two words, physio and therapy which means we treat the whole person not just their legs or arms. We try to stimulate their bodies and minds. We look at what their strengths are not just their disability. We try to build on their strengths, improve their weakness, empower them and help them achieve the highest level of independence and function possible.
We also try to improve the environment around them and remove barriers so they that can join in with activities and be part of an inclusive community. This means not only improving access and making the environment around them easier to use and participate in activities, but also changing attitudes.
Phelisanong has tried to create a more inclusive environment for children with disabilities, improving access to education, the community and most importantly changing attitudes towards disability. You need to carry on this work at home at create a family and community environment which includes your child. You need to educate the people around you because as yet, your government has failed to implement the convention of rights of persons with disabilities. The principles of this bill of rights is inclusion, participation and non-discrimination. These principles are corner stones at Phelisanong and should be in your home to, so perhaps one day the Lesotho government will implement these principles too.
The last three years have brought great improvements to the physiotherapy department at Phelisanong. Now there is a dedicated room for physiotherapy, special equipment and trained staff to help your children. Phelisanong has specialised walkers and standing frames. It has the only posterior walkers in the country, which cost a lot of money and have travelled thousands of miles to be here. If you get a chance to borrow one in the holidays, please look after it. I can’t just buy a new one at Shop Right!
Physiotherapy is not a miracle cure. Do not think I have a magic wand and can “fix” your child. However, with practice everyday physiotherapy can help your child grow stronger, build on their strengths, achieve a greater level of independence and improve their quality of life.
This is why you as parents are so important. There is no point in your child doing physiotherapy at Phelisanong and then going home to do nothing. Physiotherapy needs to happen every day or by the time your child returns from holidays they have to start all over again.
It is not just about doing exercises with them but interacting with them and helping their minds grow. Many of the children here have learning disabilities and need your help to stimulate their mind as well as their body. If you leave them sitting in a corner there they will stay. They need to be nurtured to grow as people. With your help your child can reach the best level of development and independence possible…”
I finish and ask if there are any questions. There is a stunned silence. Maybe I didn’t pitch it at the right level or maybe I covered all bases and any questions are superfluous. Later the problems of communication continue as I meet some new children. I don’t speak Sesotho, and neither the parents or Malineo’s English, is good enough to give me a history beyond the child’s age. It’s a taxing day and I’m glad when it finishes sitting out in the sunshine with all the children playing with the toys. It’s something I try to do with them every day, especially now the heat of summer has gone. It’s ironic that that in a country reckoned to have around 300 days of sunshine a year I reckon many of the children with disabilities have a major vitamin D deficiency. With mobility problems they can’t take themselves outside and nobody else thinks to do it.
The other houses are also starting to bring their children out. They’ve been told to copy what I do which could lead to some interesting situations, but I hope that it leads to better standards of hygiene and care. There is a tendency with the severely disabled small children to leave them in the cots all day with a blanket over their head to keep them quiet. It’s no wonder baby Bokang looks so surprised when she is taken outside to have a cuddle in the in the sunshine.
She’s two years old weighs little more than a new born and can barely hold her head up. Her hands are tightly clenched all the time so I gently push two fat crayons between her fingers to keep them open so her hands can be cleaned. I don’t need to worry about her putting them into her mouth because she has no movement in her arms. I’ve also brought a baby seat with me which she can sit up in as she is rigid with the high tone in all her muscles. Sitting up was making her sick, maybe it was because she wasn’t used to it as up to now she has spent most of her life in a horizontal position. As she gets more use to being vertical the sicknesses seem to have stopped and hopefully she will have a chance to develop a little beyond her current level.
With Bokang, as with all the children it takes daily repetition and lots of patience to make progress. Every day they need to be sat up, stood up, walked, played with, do exercises and repeat skills at whatever level they are at. Most importantly it all needs to continue and be sustainable when I’ve gone.
On Monday I need to go to Hlotse which is about 40 mins drive away and I get a lift with the Phelisanong vehicle. I hope it’s not going to take long but after an hour in the bank I nearly lose the will to live. Eventually I escape to the delights of Shop Right and some variety in my diet.
An hour later I am still outside Shop Right waiting for the Phelisanong vehicle to pick me up. Fortunately, I spot a Chinese business man from Pitseng and beg a lift back with him. He is too busy to take any notice of me and he spends the entire journey shouting down his phone at various callers telling them he “employs many people”. His Basotho driver drives on in silence. All the shops in Pitseng are owned by Chinese and I sense I uneasy relationship between them and the Basotho they employ.
We get back to Pitseng. I thank the Chinese man for the lift, and he tells me he “employs many people” as I extract myself from his car. While one taxi driver shouts abuse at him from the safety of his vehicle, I jump into another taxi for Phelisanong. When at last I get back there it is a vision of joy for my physiotherapy heart. There are children sitting outside the houses playing on the grass and inside the physiotherapy room there are children in standing frames, children constructing things with Duplo and other children rolling around on therapy balls. Down in the bedroom area some children are dancing to some music with a house mother. This hive of activity is all happening without me driving it, Hallelujah!
I don’t think things can’t get much better but that evening I get pictures from Saint Angela whereThato has been running a physio session with the children. Tummy time, deep breathing exercises and stretching, it was all going down. I can’t believe she absorbed so much information in the three-training day course I ran there two weeks ago. I go to bed with a smile on my face. Maybe it’s all coming together at last 😊
...
Despite my overall optimism
I still have to stay on my toes as events can still surprise me and present unforeseen
challenges. The following Sunday is particularly testing and a case in point.
I start the day early in
the physiotherapy room with over a dozen kids. I’m glad Malineo is there to
help as there is also a pack of boys outside the door hassling me to use the
physio tools to try and fix the bikes they were donated a couple of weeks ago. I
have barely got things under control when Justice calls me. He urgently needs me
to transfer some money I owe him because his dog is dying and he needs take it
to the vet. I send Malineo on a half an hour walk to find someone who can transfer the money by phone, but the person isn’t there. I try to find another way of sending the money but the dog dies on its way back from the vet. It adds to an already stressful morning as I am supposed to be meeting Mamello at noon to go and pick up a boy who has been recovering from being badly beaten by the special needs teacher a month ago.
The teacher had some sort of breakdown and beat the child ferociously with a stick, such that the boy had to spend a week in hospital. After that he went back home to convalesce and now after a month he is well enough to come back to Phelisanong. Mamello has asked me to accompany her to go and pick him up. I know this boy and have given him crutches in the past. He is a very gentle boy and would never do anything to upset anyone. He lives with his grandma and I can’t imagine how she feels about it all.
At 2pm there is still no sign of Mamello but a driver arrives to pick me up. He doesn’t speak English and I presume we are picking up Mamello on route. Half a dozen orphans pile into the van and I wonder if these are the boys friends, or just coming along for the ride. We set off with loud music blaring and pass Mamello’s house. One of the older girls in the back speaks English and I am able to establish that Mamello is ill and not coming so I am in charge of this mission. I feel a little concerned by the responsibility.
I don’t know where we are going, and no one else does, except the driver, who says vaguely we are going somewhere near the South African border but doesn’t know how far away it is. The traffic is a nightmare and we nearly get hit twice by reckless drivers Eventually we leave the main road and drive for miles down a dusty track until we finally reach the house. The boy is sitting outside in the back garden with his Grandma, where they are attempting to clean his crutches, which are broken. Fortunately I had anticipated the situation and have brought new crutches for him. I examine the wound, which to my relief is clean and nearly healed.
The grandma demonstrates how she has been cleaning the wound and gives us spare bandages and ointment as well as the boys medical notes. We don’t speak each other’s languages but I think she is reassured by my bringing him new crutches and that I am happy there is no infection in the wound.
We set off with the boy and I give out the lollipops I have brought, luckily there are enough for everyone and the trip taken on a rather jolly atmosphere, like a school outing. I think we are on the way home but instead we call in at a large Catholic school, where one of the girls wants to pick up some clothes she left. We are surrounded by dozens of children and time goes by until I insist we leave as its getting dark.
It’s night time by the time we get back. I deliver the boy safely to the house mother, then fall over the spare crutches I have brought and nearly break my leg. I am consoled by the kitchen staff who give me a large fat cake they have just cooked, which is hot and delicious. I get back to my hut and heave a sigh of relief that the boy is at least physically okay and I didn’t have to face the complexities of making peace with the grandma or explain to her why this has happened to her grandson.
It’s been one of those days which required rapid pragmatic responses and I did what I could to get the best outcomes in the circumstances. Hopefully tomorrow will be a bit more “normal” although I’m never sure what that means in regard of Lesotho healthcare.
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