Sunday 19 May 2019

Blog 38: Back home, reflections


Manyanye picks me up from Phelisanong and takes me back to Maseru. I meet up with Justice and Thato and we head out to Ha-Sekantsi village for the weekend. It’s the remote Basuto village Justice’s mother grew up in. We went there together last November and I enjoyed meeting the villagers and the breath-taking scenery. On route we stop at another village to take medicine to one of the village elders who I met last time, he has cancer and is being looked after by relatives.  He lies on a mattress on the floor, his body shrunken by the ravages of the disease. He recognises me and smiles and makes a joke, the body may be frail, but his spirit remains unbroken.  


We continue our journey and by the time we meet the ponies taking our bags to Ha-Sekantsi the sun is setting and we walk to the village by a sliver of moonlight. The village children are very excited to meet us and all of them want to help me pitch my tent. This turns out to be rather complicated in the dark and because I haven’t pitched it before. I bought it in the UK because it was light, rather than user friendly. I spend an uncomfortable night under its saggy canvas. It’s also freezing as it’s now winter and cold in the high mountains. 
I’m glad when the sunrises bringing clear blue skies and a comfortable 24 degrees. We have a quick breakfast and start up Thaba Chitja mountain (round mountain) which rises above the village. Its not very far but I’m feeling rather dizzy from lack of sleep and general exhaustion after the last three weeks at Phelisanong. The path leads up around the back of the steep mound and the herd boy guides us up to  the top and beautiful panoramic views of the wild Maluti mountains. I play my native American flute and its natural tuning seems to suit the raw beauty of the scenery surrounding us.

On the way backdown the herd boy takes us to the cattle post he use to stay at under the sheer cliffs while his herd grazed what vegetation they could find. He lived there for three years with nothing save his blanket and a small wall built from the rocks laying on the ground to protect him from the elements. I tried to imagine him sitting there at night, huddled in front of a fire, looking up at the spiral galaxy of the Milky Way laying its thick cosmic trail across the spectacular night skies. After a rock fall the post has now been abandoned and the herd boy uses a safer but less dramatic outpost.

We get back and, in the afternoon, Thato gives out the school uniform to the children that she has been able to buy with a donation from a benefactor. The children walk a couple of hours to school and must have school uniform to be able to attend. Trying to find money for uniform is a big deal when you are trying to live off the land out here.  There is more good news, as well as the free uniform Thato has secured a grant that will provide sewing machines for some of the ladies. In the future they will be able to make their own clothes and have a potential source of income too.

After an evening by the crackling fire I go to bed and am awoken at sunrise as the sun send its rays over the top of the mountain straight into my tent. There is a gathering of local farmers who have come to discuss moving the animals to the winter pastures. Although this is going to happen there needs to be a collective mindset and general agreement before the animals can be moved. People take it in turns to speak and there is nodding and murmurs of agreement before the next person stands up to give their opinion. It’s a timeless, cultural thing which to an outsider wrapped up in the schedules of the Western world makes no sense at all. At last everyone who wants to speak has been heard and it’s agreed the animals will be moved.

We are on our way and walk back to meet the taxi driver, Sabbath, at the road. He returns us to the guest house on the outskirts of Maseru and a very different lifestyle to Ha-Sekantsi village. I prepare myself for the last couple of days at Saint Angela’s and on Monday afternoon I go with Thato to run a physio session with the kids. She’s done a few sessions with them while I’ve been at Phelisanong and has done well to build on the small about of knowledge from the training course I ran before leaving.

On Tuesday I round off that course, “Introduction to working with children with disabilities in the community”, with the candidates, before running another afternoon physio session with Thato. The kids here are so enthusiastic, and we manage to get the standing frames out and get a couple of them standing, as well as stretching, strengthening and core stability exercises with a host of other kids.

I fly home the next day and it’s the first time I’ve left Saint Angela’s feeling positive and that things will carry on after I’ve left. Thato has agreed to keep things running and run a couple of sessions of physio with the kids every week during term time. The retired physio on the course may also be occasionally able to come and join her which would be provide valuable experience and input. 

I’m so grateful that Thato has agreed to continue the physio. The children have not had a physio assistant or social worker for the last year. Thato has much experience in working with young people and will be a good advocate for them, as well as physio assistant. She has already been running a voluntary literacy program for some of them so will be able to build on the good relations that she already has with them. With finances being stretched Saint Angela cannot provide specialists in a single discipline, they need a good all-rounder which I feel Thato has the skills and experience to provide.

As I sit at home in Wales writing this I am happy with the way the trip went and feel I achieved all I set out to do. I ran the training course at Saint Angela’s and established some useful links and support for the children in the surrounding community, especially Thato and the principle of the high school the children attend. Saint Angela’s is still on a financial knife edge, but things are definitely improving and the grounds and the gardens are the best I have seen them, with a verdant greenhouse and another greenhouse due soon. The first lady visited on the morning I left, with possible government support in some areas in the future. Things are definitely moving in a positive direction.

As for Phelisanong, I got the physio room and dormitory block working well together, assessed the new children and left Malineo with a clear plan of what she should be doing with them. I ran training courses with the house mothers and teachers and tried to establish some basic hygiene rules and child care principles. I attended a meeting with the strategic counsel and gave my opinions on future priorities that Phelisanong should focus on. In particular retaining quality staff. I feel Malineo is now well established as the physiotherapy assistant and the provision of physiotherapy at Phelisanong supported.

Overall I feel I was able to build on the last three years of work at Saint Angela’s and Phelisanong and the foundations have been laid for this to be continued and sustainable. Next year will be five years I have been coming to Lesotho and I hope to return and consolidate everything, maybe even look towards starting the outreach program at Saint Angela’s. For now though, I just want to sleep. On Monday I’ll be back working for the NHS, a different world with different concerns. 

 
                         

Friday 10 May 2019

Blog 37: The miracle of Limpho


My last week at Phelisanong and there still time for some surprises. Little Katleho, aged seven, arrived here last Sunday having, up to now, refused to walk unassisted. She tore up and down the path on a walking frame I gave her and obviously had all the right moves but not the confidence to let go. I decided to walk behind her and gently hold onto her hoody. A few days later, when she was still under the illusion I was doing this, I let go and the rest is history as they say!

Much more dramatic for me was Limpho (pronounced Dimpho). I don’t have any medical background about this child. She is an orphan, severely physically and intellectually disabled. The house mothers think she might be about five years old, but she looks more like an undernourished two-year-old. She lives in the baby house next door to the physio house and spends most of her time crying in her cot when she is not asleep. She has worn away her hair from lying down so much and has a sore on her head.

Her little body is rigid with extensor spasm and she is almost impossible to feed as she gets so distressed by the experience of trying to swallow. If she was in the UK, she would have a peg and be tube fed directly into her stomach. This not being an option I have tried every sort of position and technique I can think of to feed her and only succeeded in getting a few teaspoons spoons of porridge into her in the course of hour. No wonder she is so undernourished.

She does stop crying when I lift her from her cot and one afternoon, I was giving her a cuddle and talking a load of baby nonsense to her, when she suddenly smiled at me, followed by a little chuckle. Honestly, I was so taken back I nearly dropped her, but a greater shock was in store. The following day I decided to try feeding her again and put her in the small Panda seat that I have brought here.

I’ve tried this technique before, tilting the seat back to recline her at a comfortable angle, while I gently assist her to open her mouth and take a small spoonful of Weetabix. This normally results in her  clamping down on the spoon and the food just staying in her mouth to dribble out at the lips when the next spoonful is fed. To my surprise the food is gone, and she opens her mouth to receive another spoonful and another, until suddenly there’s nothing left.   

The whole cup full is gone in less than 10 minutes. I can’t believe it, neither can the house mothers. Limpho starts crying, but only because we have stopped feeding her. The house mother quickly makes another cupful which Limpho consumes even quicker then cries for more. After the third cup I stop, this must be the largest meal this child has ever consumed in her lifetime and she is starting to look at little uncomfortable. I pick her up and gentle cuddle her to encourage the food to go down in her little distended stomach. She gives a large burp and then a smile as if to say, “just messing with you.”

I can’t really explain what happened. Maybe it was just that I felt very relaxed about the feeding which made Limpo relax and her muscles correspondingly relax. Maybe the angle of the Panda seat was exactly right, or maybe it was a miracle. The head house mother hugs me with delight, hopefully we can repeat the experience at every meal.

I put Limpho back to bed and prop her up in her cot so she can look around, wedging a blanket under her knees and between them. She has a dislocated hip, not uncommon in immobile children with cerebral palsy. Limpho doesn’t seem bothered by her hip and appreciates sitting up and looking around her, as does Bokang in the cot next door to her.

It’s another routine I hope the house mothers will pick up on, instead of lying children down with a blanket over the head to keep them quiet, giving them no chance of social interaction or developmental progression. Bringing about this change in routine would make a big improvement in the quality of life for children like Limpho, but it’s not easy changing the mindset of the care mothers.

It’s been a very emotional morning. In the afternoon I have training with the teachers, covering three areas; infection control, nutrition and epilepsy. The whole course takes less than two hours, but I find it exasperating at times, particularly trying to make it an interactive session. After talking about epilepsy I get them to have a go at putting someone in the recovery position. All the teachers have experienced pupils having major seizures as many sufferers are not on medication, either because it is too expensive, or their condition is undiagnosed.

The teachers are particularly coy about doing the recovery position and eventually I lose patience and tell them that they are not leaving the room until everyone has done it. Finally, it’s done, and class is dismissed. The teacher whose classroom it is chats to me as I tidy up. She shamefully admits to me that she was told that you could catch epilepsy from a person if they were convulsing and their saliva touched you.

I realise that the teacher’s bashful behaviour over the last two hours has been because they were worried about looking ignorant in front of their peers and were reluctant to say or do anything in case it was wrong. Also, they come from a tradition of chalk and talk, so participating in discussion was rather alien to them. Well tomorrow it’s training for the house mothers turn and I will certainly have to turn it down a notch.

The following morning training with the house mothers goes as expected. Mamello translates for me and Mme Elizabeth also attends, the new administrative coordinator. She understands the necessity of good hygiene and the need for hand washing, cleaning products, wipeable changing mats and hygienic rubbish disposal. I give her my notes on a flash stick so she can read them at leisure and produce some basic rules for the house mothers. I also point out to her the need to constantly monitor the situation and follow up any systems she puts it place.

I show her the current rubbish disposal system, which is basically a wall by the river where hundreds of festering nappies are piled up waiting to be burnt one day. She is outraged that her instructions haven’t been followed, I shrug my shoulders and tell her to always check with her own eyes that what she has instructed has been done. She gets my point. Its one thing paying lip service to any training I do, its another putting it into action. That’s why I keep going back to Phelisanong to reinforce everything I have done and slowly things are changing for the better.

Thursday morning and its goodbye again. It’s a cold misty morning and hundreds of people are crammed into the school hall singing, dancing and shaking my hand. I find it emotional and embarrassing. Mamello gives a speech and one of her favourite stories about me and a little boy who was bought here unable to walk. He was born premature and his mother died in childbirth. He spent a long time in hospital and the doctor said he would never walk.

When I saw him it was apparent to me he had delayed development and would walk given the right encouragement. Sure enough he did. It’s not the first time I have made such a prediction and for me they are unremarkable. It’s something I would expect any experienced physiotherapist to be able to do.

The value of such predictions being born out, along with consistently returning and practicing what I preach, is that it adds to the weight my words carry here. Things that I have asked for have gradually happened and training has had an effect. The cumulative effect has resulted in Phelisanong seeing the value of physiotherapy and now have their own full time physiotherapy assistant, who I have trained, a physiotherapy house which I have equipped, a flat path around the center, allowing children with mobility problems a chance to walk to school, children with swallowing difficulties are not fed on their backs, children are being taken out into the sunshine to play, and by having opportunities of regular physiotherapy children have a chance of greater independence and quality of life.

Hopefully one day people will routinely wash their hands, rubbish disposal will be hygienic, children with severe disabilities will be routinely sat up and have a chance of social interaction, nutrition will improve, children with epilepsy won’t be stigmatised. These are some of many messages I try and get across, formally and informally. If I thought about the huge number of problems to tackle it would be difficult to know where to begin, but when I see the difference it makes to individual children like Limpho, I know the work is worthwhile and needs to continue.                          
                          

Thursday 2 May 2019

Blog 36: Its all coming togther ?

Its Saturday and I decide to take a day off after working eleven days straight. Despite the joy and sense of worth I get from doing this work it is physically and mentally exhausting, especially given the endless rain and mud during my first week at Phelisanong and my primitive living conditions.
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.    


Tuesday 23 April 2019

Blog 35: Counting my blessings

Manyanye picks me and the equipment up from Saint Angela’s and it fits perfectly into the back of the Buckie. In the two and a half hours it takes to get to Phelisanong Manyanye manages to successfully negotiate four police check points by brandishing his warning triangle and driver’s license at the officials dressed in bright yellow jackets. The Buckie may look old and battered but it has all the right paperwork, good tyres, decent suspension and doesn’t give the disappointed police any cause to make a spot fine.
Malineo, the physio assistant who I have trained, is outside the physio house when we arrive and grabs me excitedly to show me all the progress that has been made since I was here in November.  At that time the physiotherapy dormitory block was still not complete, and I wasn’t sure how the ramp connecting to the physio room was going to work, or if there would be enough space once they’d put the beds in.
It’s all working a lot better than I hoped and was worth the huge headache the ramp gave me on my last visit (see blog 32). The ramp is acting as an extra piece of physio equipment. The hand rails, running down the side of the ramp, which I recycled from an old abandoned bed frame, can be used by the children who need balance support. Holding on they can  get up and down the ramp and along the bottom of the beds. It’s great physio for them. The children that can crawl can access the two rooms independently and sometimes use the ramp as an extra piece of furniture to sit on.
Mab has fixed the ceiling, the leak in the roof and the outside cladding, which all suffered in the great storm (see blog 32) and the room is now warm, cosy and easy to heat, a blessing with winter coming on. It would be great if one day the physio room could also have a ceiling and electrics to make it more user friendly during the cold months. Meanwhile the space it offers and all the equipment it now houses make it a great asset for the children with disabilities at Phelisanong.
The evidence of these benefits is the astonishing progress some of the children have made. Josh is now walking. I always knew he would but it’s heart-warming to see him standing at the door entrance with a shy smile on his face. Tula is also taking her first tentative steps while Mothimokholo can stagger right across the room with his wide ataxic gait.
As its Easter relatives are visiting for the day. While the children are occupied, Malineo and I unpack all the equipment and sort the physio room out. I have over 100 pairs of special orthopaedic boots, most of them brand new, casts off from the NHS, unable to use them again once they have been ordered and rejected by patients for whatever reason. I also have some more frames and special seating and a heap of Lego and Duplo and various other toys to stimulate the children’s minds and hand skills. This is the second load of equipment that Action Ireland have brought out to Lesotho for me. Collecting it and organising its transport to Ireland has proved highly stressful. It’s a relief to see it arrive at its destination, unpack it and finally  use it.  
The next day besides catching up with the children I already know, I start assessing some of the new ones. I see a couple of boys with hemiplegia’s  and one with spina bifida  and club feet. This is the third child I’ve seen here who has an operation for club feet but no follow up treatment.

Without special boots and bracing bars the feet just revert to their old position, meaning the operation is a complete waste of time.
I give him some new supportive shoes from my stock, put them on the wrong feet and tell him and the house mothers he must wear them every day like that to try and correct the position of his feet. He is only 6 years old and is the sweetest of children, smart, with a huge smile and desperate to do all he can to overcome his disabilities. At the end of the day I find him in bed and he quickly removes his blanket to show me he if still wearing his shoes on the wrong feet. What a star !
Less up lifting is the little 2-year-old girl, Bokang, I see in another house. She is an orphan and severely disabled, both physically and intellectually. Her whole body is rigid with the high tone of her muscles, her head and fascial features dysmorphic and her eyes don’t focus on anything or turn towards the brightly coloured toy I am holding. I fear she may be also be fitting as occasionally she jerks, and her eyes roll. The house mothers say she doesn’t have swallowing difficulties and are feeding her with a small spoon. Since she can only weigh a few kilo’s I don’t know how much nutrition she is getting.
She is not taking any medication and there is no medical monitoring of the children here, except those which have HIV who go regularly to a clinic, or those who develop emergency symptoms and get taken to hospital. I feel overwhelmed with where to start and what realistically I can offer her to improve her life. I decide to see what tomorrow brings and think on it for now.
Going back to my hut on the hill I feel a bit down, the weather and my living conditions don’t help. It’s now heading into winter, it’s cold, with lots of thunderstorms and thick red mud everywhere. Ironically, despite the amount of rain, the outside tap doesn’t work. The roof and the door to the long drop toilet have blown off, my hut roof leaks and there is no light. There is occasionally electric, when it’s not knocked out by the thunderstorms but there is only one plug and I simply haven’t had the time to go to town and find an adapter to try make life a little easier.    
The other three huts around me are full of orphans and the rubbish they have dropped litters the ground everywhere, trodden into the mud. A little Albino girl, holding a baby on her hip not much younger than herself, tells me there are nine children in her hut, a hut which is smaller than the one I’m living in and has no electricity at all. I feel guilty about my extravagant living style when they have so little and will live in these conditions all their young lives.
Later a gang of half a dozen cheeky boys come calling at my door to parade in a couple of Basotho blankets and see if I have some tools to dismember a bike they have been given. They stand there in the rain bantering with me and not feeling at all sorry for themselves, so why should I ?
It’s food time and they run off down to the centre with their plastic bowls to get some pap. They have the security of regular meals, shelter, friends and a bike to share between them, life doesn’t get much better. These kids and their great ability to squeeze whatever joy can be found out of each day give me a reality check.
I smile, wash the mud off my hands and find the electricity is on and I can make a cup of tea. I  count my blessings, life is good, it just depends on your outlook.   

The next day the rain is unrelenting and there is a large pool of water which I need to negotiate outside my door. There are torrents of water pouring off the hills, which at least mean I have easy access to washing water. Down at the centre there is no sign of Malineo, and I decide to put together the two Panda seats I have brought. These provide special seating for children who need postural support, one was given to me, obsolete from stores, and one I brought off eBay. They are very expensive to buy new with all the attachments.
It takes well over an hour to work it out how to put them together and once they are fixed, I go to the house next door to find Kananelo to test drive one. He has no control over any of his limbs and they all wave around excitedly as he recognises me. I pick him up with some difficulty and place him in the smaller seat which has a chest harness and head rest which hold him firmly in position, the best thing for children with his condition.
It’s the first time I’ve seen him able to sit still, and he appears to like the sensation. Later when food comes the house mother takes him out of the seat and attempts to feed him on the floor. He gets very distressed. Once back in his seat he calms down and feeds well. If only for his sake it was worth getting the Panda seats out here.  
 

I attempt to feed the baby Bokang a bowl of milk and lumpy pap one of the house mothers gives me. Bokang makes heavy weather of it, no wonder she’s so small. I have a blender to try and make the food smoother, but there is no electricity. The house mother resorts to the dreaded Weetabix, which I was so familiar with in 2016. I wonder how Bonkang has made it this far.
In the afternoon the weather continues to be shocking, but I have two special treats for the children. I play them a film off my laptop and give them all a chocolate lollipop to suck on while they try to follow the Disney classic, Finding Nemo. Bokang and Mothimokholo both lovingly cuddle up to me and dribble all down my trousers. It doesn’t matter because I haven’t been able to wash my clothes since I got here, and the stains blend into each other.
Whether a fish with a disability rings any bells for them I don’t know but the kids seem to enjoy the film and the lollipops go down a storm. After the film is over, I give Tokiso my old laptop, which he is completely thrilled with. He is the only one with the manual and intellectual skills able to make use of it, but the others sit around him absorbed with what he is doing.
There’s no internet but I have downloaded some games from him to play on it which hopefully will entertain him for a while. Sure enough the next morning he is still playing on it. I do physio with the younger kids in the morning and the older ones in the afternoon. The older ones are the crew that I’ve been working with since I first came here in 2016, how times have changed since then. 

I play various games with them to get them to stretch and strengthen without it being a chore. There is plenty of room for them to roll up and down on the crash mats and be chased around on the floor by me in a game of tag. After that everyone gets a walking frame and we set off to make a complete circumnavigation of the centre on the wonderful flat path.
They are all using posterior frames of the same spec that kids would use in the UK. We pass the old physio room, which was just a corner of a hut and was also used as the clinic. It had no facilities except some adult plastic chairs. We breeze past the school, remembering Tokiso’s first epic journey to walk there in 2017, taking him more than 20 minutes to negotiate a few hundred meters on the rough stony path. Finally we arrived back at our lovely on suite physio room, which I never would have envisaged back in 2016.
It’s time to go home and I walk back up the track to my hut. It’s finally stopped raining and I risk doing some washing in the torrent that is gushing down the hill. The outside tap has miraculously come on and I have drinking water. The electricity is also on and I have an extension cable so I can charge my laptop and heat up some beans at the same time. I also now have some candles which brighten up my dark hut as I write this blog.
Outside the orphaned kids are running around screaming and chasing each other. The boys are half wild while the young girls are already responsible adults, collecting water and nurturing the toddlers. Tomorrow school opens again after the Easter break and they will become school kids again. I guess in the UK we would call them young carers, here with so many thousands of orphans, it’s just what happens. Later I hear a group of the girls singing completely unconsciously with beautiful harmonies. It’s been another day well spent and my blessings are many.   



Thursday 18 April 2019

Blog 34: The last roll of the dice ?


Less than 5 months since my last visit in November I’m back again in Lesotho. Events have conspired in a certain way that mean I am standing at the airport at the end of a long que where one official is hand writing various details from everyone’s passport and then scanning their eyes with a hand held thing which looks like a laser gun. It takes an age but doesn’t matter because it takes the ground staff the same amount of time to unload the plane, wheel the luggage inside and chuck it on the floor.

I grab mine and am thankful that somehow my bag has managed to negotiate Paris and Johannesburg and arrive unscathed in Maseru. The next hurdle is to get through luggage search, and I decide to act innocently and see if I can avoid it, and head straight out the door. A plane clothed security man points crossly back to the baggage search, while another man studies my passport. He sees all the previous Lesotho stamps and the word “voluntary work”, decides I’m legit and finally I get the all clear to leave the building.

Outside I look for the taxi driver, Sabbath, and find him standing on the pavement looking rather magnificent in a day glow green shirt and beret. “Mme Jan how are you?” he says with a big beaming smile, giving me a hug.

“Great thanks, I love your outfit. What happened to your car?” I ask him, staring at a rather battered grey vehicle he’s piling my luggage in.  Sabbath fills me in on a rather alarming episode he had in Bloemfontein when he was chased by potential hijackers trying to steal the former flash taxi he owned. After that he decided discretion necessitated getting rid of his stand out car and to seek the safety afforded by grey anonymity. I can’t say I blame him, and his clothes certainly make up for the motors drab appearance.

After some shopping for some supplies, we pick up Justice from town and head back to my accommodation at his guest house. It’s undergone a revamp and now has all mod cons and is a very comfortable abode. I have a meal with Justice and his wife, Thato and discuss the state of the nation, the state of his family and the state of Saint Angela’s.

Since I first came here in 2016, I have been disappointed with the organisations ability to sustain the work I have done. I am now going to run a 3-day training course, with a follow up day in May, called “Introduction to working with children with disabilities in the community”. The intention is to try and instigate some community support for Saint Angela’s and look at ways the community can become involved and contribute towards the children’s welfare. I feel it’s the last roll of the dice in trying to sustain physiotherapy here.   

It’s a small pilot course with 4 teachers, a local parent of a child with disabilities and Thato, Justice’s wife, who has qualifications and previous work experience in the community. I’ve been trying to organise it from back in Wales with pre course questionnaires, schedule and reading. The course starts the following afternoon and I spend the morning running around trying to organise the set up and check the arrival of the equipment which I sent out with Action Ireland last November. It all seems to have arrived safely, except  a filing cabinet, which I suspect is still back in the warehouse in Ireland.

The course starts, nearly on time. We are two teachers down but have gained a retired physiotherapist, the first physiotherapist I have ever met in Lesotho! She tells me she thinks there are probably only 7 qualified physiotherapists in the whole of the country, mostly based around the capital Maseru. The two teachers that have turned up are from the adjoining high school, and one is the Principle. The other two candidates are Nka, who is the mother of a child with disabilities and Thato. I am happy, better to have 5 enthusiastic candidates than 20 indifferent ones. Workshops are a bit of a culture in Lesotho, normally with nothing to show at the end except the consumption of a free lunch and refreshments.

At the end of an afternoon of classroom teaching we go across to the physiotherapy room to look at the facilities and meet the children. There are 32 children at Saint Angela’s and most of them are trying to get into the physiotherapy room at the same time…its chaos! At one point there are 3 children balancing on therapy balls in the parallel bars and 6 sitting astride rolls, another 6 on the floor building Lego, while others are lifting weights and playing floor football.

The retired physiotherapist looks in shock and even I am a little taken back as I realise I’ve never met half the children before. Anyway, I roll with it and at least the course delegates get to meet most of the children and get an idea of the range of disabilities the children have at Saint Angela’s. It’s been a day of learning for us all.  

The next morning, I call on Nka and meet her daughter Khothi and her aunty. The three of them share a typical Lesotho one room shack, with a tin roof. Everything the three of them need to exist is piled high around the walls of one small room. Their home is just around the corner from Saint Angela’s and aunty looks after Khothi when Nka is away.

Khothi has an engaging smile and can crawl and sits outside with me on the step enjoying the sunshine and watching the herdsman tend his cattle. She can’t talk but can understand what her mother says. Nka prepares some food to show me the problems she has feeding Khothi. Before she eats Khothi presses her hands together, indicating we should all pray before she eats her meal.

I am amazed how Nka has overcome so many problems to provide for her daughter over the last 25 years. As a single mother living in poverty the quality of care she has provided is astounding and something I doubt something I could provide living in her circumstances. There is little professional advice I can add to what she already provides, except to tell her what a great job she is doing.

We meet up again for the afternoon  training session which is mostly physiotherapy orientated. Two more teachers who were supposed to be on the course turn up, but I tell them they are a day and a half too late and there is little point in them joining us, especially as one says she must leave early to go to the bank!

We carry on without them and have a rather amusing session with me trying to teach basic core stability, joint range of movement, and stretches, before the trainee’s test drive their knowledge on a few students. Over a dozen disappointed students wait hopefully outside the physio room, but I simple can’t let them in while I am trying to concentrate and teach. It’s such a short time to pass on a lot of knowledge but the trainees are enthusiastic and picking up things fast.  

The third day dawns and starts with a brief look at epilepsy. It turns out the teachers sometimes have children fitting in the class but don’t know what to do. People have heard theory’s ranging from putting a spoon in the child’s mouth to calling a priest. It’s not uncommon in Lesotho to  think someone having a fit has been cursed.

We go through simple do’s and don’t and everyone practices the recovery position. I suggest to the Principle that she does   training with her teachers and every class teacher knows who is epileptic in their class and what to do. Also, that the children are encouraged to tell their teacher if they feel a fit coming on. It is very useful that the Principle is on this course and can train the rest of the school. She is very grateful to have the information, as she is supposed to be the lead on this matter, and up to now hasn’t known what to do.

After this we take the hazardous journey to school using wheelchair and crutches. The ground is very rough and the ramps too steep and everyone is amazed at the hard work  the children must do every day, maybe several times as they have to go back to Saint Angela’s if they want to use the toilet.

The Principle  thanks me for the experience just before she has an accident and tips backwards out of her wheelchair and hits her head on the ground. It could have been a lot worse but fortunately she is wearing a thick hair piece which absorbs most of the impact. After lunch and two paracetamol she’s ready for the afternoon session.   

I decide to go easy on them and do some diaphragmatic breathing and relaxation therapy. A ten-minute chill and its back to working with another student, trying to assess her difficulties and come up with a plan. It’s a tough one as the girl said she could walk up to the age of 12 then had a fall, broke her arm and can no longer walk. The doctors say its arthritis, which I doubt, but I have no idea why her ankles are fixed, and someone has operated on both her achilles tendons.

We come up with a simple plan and then I call it a day. It’s been a course of information overload which is why I won’t review it with them until the follow up date of the 14th May. In the next few weeks I challenge them to action their knowledge and run some physiotherapy sessions. For now, I’m happy with the way things have gone and the candidate’s response. In May I’ll find out if they’ve learnt anything and what happened after I left.

Now its time to pack up because I’m going to Phelisanong tomorrow.  Another children’s centre, another challenge.