Blog 48: Diagnostic Dilemmas

I take a thorough history and assess the boy; we are at the high school and Thato is translating for me. He remembers his troubles began in primary school when walking became difficult. Over the years things became more problematic and eventually he had to use crutches and leave his local school as the grounds and toilet facilities became too testing for his ability and the teachers believed he was being lazy. He came to Saint Angela, where disabled facilities made his life easier, and the high school is only a few hundred metres away. He still had to get up very early so he wouldn’t be late for school, as even this short distance was taking him over 40 minutes to cover using his crutches. Gradually it became too much for him and this year he had to start using a wheelchair and needs someone push him as he can’t self-propel. 

 He says he can’t self-propel because he hasn’t learned how to yet. He says can’t independently transfer because he hasn’t learnt how to yet. There is a desperation in his conclusion that he only needs someone to teach him and he will be able to do these things one day, but I know he can’t be taught. His legs and arms that can’t even lift their own body weight will never be able to do these things. His progressive weakness and fatigue, his problems with breathing, heart palpations, enlarged calf muscles, history of onset can only lead to one conclusion, he has muscular dystrophy.

 

Muscular dystrophy is a progressive muscle wasting disease caused by a genetic mutation, usually passed on by the mother to their sons. There are many different kinds but from his history I suspect he has the most common type, Duchenne’s (DMD). I ask him if he knows what is wrong with him and he says he doesn’t know and he doesn’t understand why he can’t do things anymore and is getting worse. He has tears in his eyes and hangs his head. I tell him we will come out to visit him at home and discuss his problems with his parents. It’s a dilemma because I am going to take away any hope he has of getting better and replace it with the bleak realities of a progressive disease in country which offers him and his family little assistance to get through the toughest of times. 

 

In the UK expert medical specialists and therapists are available to support patients with muscular dystrophy, together with power chairs, hoists, support groups, counselling, respite care, disability transport and all manner of things to try and ease the burden of this tragic disease. Here in Lesotho the boy tells us he has received some vitamin supplements and told to go to physiotherapy and do some exercises. This stopped back in 2019 and now the family are basically on their own and must find the strength to support each other as best they can. Easter weekend is coming so the boy will be going home. Thato calls his mum and arranges an appointment, and we head out on Good Friday. 

 

The rough road gets muddier and eventually I park rather than risk getting stuck in a bog. The boys brother comes out to meet us and guide us on foot to the house, I regret I have put on my best trainers, while Thato regrets she has put on her white shoes. The house is in the middle of a row of one room buildings with tin roofs, typical of the housing poorer people live in Lesotho. In this one room all family life takes place. We knock on the door and mum invites us in. There is a double bed taking up most of the space on which the two teenage boys sit. The rest of the room is crammed with a wardrobe, a kitchen cabinet, a table with a washing up bowl and a two ring gas burner on it, boxes of clothes, tubs of maize and various food stuffs, a wheelbarrow and spade, a spare door propped against the wall with a picture of Jesus and an Angel stuck to it, vegetables and beans spread on sacks the floor and a bench on which Thato, and I are invited to sit. 

 

The mother sits opposite us, a slim woman, her face tired and drawn, a cross around her neck and clasping a battered straw hat in one hand. We introduce ourselves and Thato translates for me and explains why we are here. I ask if they have the Bukana, the boy’s medical book, unfortunately it has been left at Saint Angela, so I ask her to tell us about his medical history and what has happened over the years. As the mother recalls everything slow tears of desolation run down her cheeks and continue for most of the two hours we are there. She picks up a flannel and uses it to occasionally wipe her face when the tears get too much. I want to reach across and try to console her but feel that is culturally not the right thing to do and might embarrass her and the boys. 

 

The boy sits on the bed with his head down pretending to read a newspaper but taking it all in. His mother’s moment of greatest despair comes when she tries to explain how she has to carry him down the muddy track to the long drop toilet, I can’t imagine how terrible it is for her or her 16-year-old son. He has no wheelchair, no independence, no dignity, and she must watch her boy slowly losing the most basic of capabilities. She says the doctors have told her he has a disease passed on in the family and that he would end up in a wheelchair. She says she has tried to get a wheelchair, but to no avail. He is borrowing one from Saint Angela when he is at school, but he can’t bring it home and anyway it’s too small for him and hurts his legs. 

 

I try to gently explain about the nature of DMD and how the progressive muscle weakness affects not only a person’s mobility but also the heart and respiratory muscles. I suggest to her some of the practical things she can do to help her son, some passive stretches to keep his joints from stiffening up, posture awareness so he can breathe more easily, good nutrition and help with activities of daily living so he can preserve his energy, as even small amounts of activity quickly exhaust him. For his part I encourage the boy to do some deep breathing exercises to keep his lungs fit and try to reassure him that it is not his fault, it’s not that he’s being lazy, or not trying hard enough. 

 

The boy also needs additional help with his activities of daily living when he stays at Saint Angela so he can save his energy for school, but the care staff are over worked and underpaid and unable to give him more time. Sister dropped him off at his last hospital appointment and left him there alone for half a day. Without being able to self-propel he was totally stuck for four hours, long after the examination was completed. His mum is concerned that any complaints about this lack of care will result in his expulsion, and he will never have a chance to complete his schooling. She begs us not to say anything, however inadequate the care is at Saint Angela it’s all there is for him, and he needs to keep his place there.  

 

For our part I pledge as much support as we can give both practically and emotionally. I add him to my wheelchair list when I go South Africa next week. Once he has a wheelchair we can bring it back with him from Saint Angela during the holidays so he can use it at home. Perhaps we can improve the path to the toilet to make it more accessible. He has a check-up due in July and I want to go with him to see about the possibility of him getting steroids to maintain his strength to complete his schooling. He likes school, his favourite subject is maths, and he has one more year to complete and graduate. It would be a goal for him and give him purpose, but without more medical help I’m not sure if he will make it. The alternative of giving up school and spending the rest of his time in this one room hut would be too crushing for him and the family. I hope somehow, we can help to keep this small glimmer of hope alive for him and offer him a realistic prospect for his immediate future to focus on. Beyond this possible dream the bridges which lie ahead will have to be crossed when he reaches them.

 

The mother escorts us back to the car, she has stopped crying and seems a little brighter, maybe because someone has taken the time to listen to her troubles and maybe because we have promised some practical support. We wave goodbye and drive away. Thato shakes her head, “Eish, this job!” she says and doesn’t need to add anymore, we are both totally spent. 

 

On Easter Monday I go on another home visit to a boy residing at Saint Angela during term time, but mum has pick him up over the Easter weekend to stay with his grandma and uncle, who live in the Maseru district. I have assessed this smart 10-year-old boy at the primary school and diagnosed him with spastic cerebral palsy affecting his lower limbs. During the physiotherapy sessions we run at the primary school he has been an enthusiastic participate and I wanted to meet his parents to speak to them about how they could help him with his physiotherapy during the holidays. 

 

I arrive with Ntseliseng, after explaining to the family who I am and about the outreach program. I ask to see his Bukana and happily, they have it.  I flip through the pages which detail a premature birth, admitted to hospital with respiratory distress, vomiting and seizures. After assistance with breathing, infusions, and medicine to control the seizures he was discharged but at three years was still unable to walk. Sent to physiotherapy there was no progress and eventually mum was able to obtain a wheelchair for him through some organisation, but I’m not clear who. This wheelchair is now far too small for him and broken. 

There is nothing from the medical history in the Bukana to suggest he has anything other than the cerebral palsy I have already diagnosed.  There is also a physiotherapy entry in 2014 which notes in small writing, “paraparesis CP”. 

 

“So, you know your son has cerebral palsy?” I ask the mother. Ntseliseng does not need to translate as the mother speaks good English. The mother looks puzzled and says “No”, she didn’t know. I go onto explain about the causes and nature of cerebral palsy and demonstrate the stretches with the boy which will help prevent contractures of his legs and the exercises which will keep him strong for independent wheelchair transfers. The mother helps with the stretches when I invite her but looks shocked and upset. Eventually she asks to speak to me outside, she has tears in her eyes. “You are saying he will never be able to walk?” 

 

I take a deep breath, “Yes, I’m really sorry he will not be able to walk.” 

“And there is no point in me taking him to South Africa for an operation to help him to walk?

No, I’m sorry there is not an operation that can help him to walk” I say sadly. 

“And we should concentrate on these exercises and try and get him a wheelchair that fits him?” She asks with resignation. 

“Yes, I think that is the best way forward” I say quietly. 

 

The small entry in the Bukana was obviously never explained to her and I have now extinguished the hope she had that her son might walk one day. I have found that even when children do have a diagnosis from a professional health practitioner in Lesotho it is not explained in a way parents can understand or empowers them to prepare for the future. I try to soften the blow by urging her to focus on her sons schooling and developing the bright intelligence he obviously has. She goes on to tell me of her shock when she picked him up from Saint Angela this time, dirty, uncared for, itching with a rash, his wheelchair broken. She can help with his exercises at home but who will help him at Saint Angela?

 

I compound her misery further by explaining the physiotherapy room has been shut at Saint Angela for over a year and I can only see her son once a week at school. That Saint Angela is chronically understaffed and overcrowded and that the itchy rash her son has is scabies, a contagious mite passed on through close contact. We noticed several of the children had the itchy raised lumps when we saw them at school, I took pictures and sent them to the paediatrician I use to worked with back in Powys. She diagnosed scabies and sent details of the necessary treatment and cream needed to kill the mites and eggs. I explain this to mum, who looks horrified and then it dawns on her. “But if I get the cream and treat him then he will just catch it again when he gets back to Saint Angela?”

 

“Yes, all the children need to be treated to eliminate it” I concur. We agree that there is little chance of that happening and since her son is presently sleeping three in a bed she may as well leave it until he comes home for the long winter break. She asks me if I know of anywhere else she can send her son apart from Saint Angela, but I don’t know anywhere. Poor parents are in between a rock and a hard place when it comes to getting quality residential care which will allow their children to go to school in Lesotho. I add the boy to my wheelchair list for when I go to South Africa, write down the exercises for her that her son needs to do, the cream she needs to get for scabies and my What’s App number. She will start to look for somewhere else for him to have an opportunity to develop the sharp mind he undoubtedly has, but it’s a tall order.  

 

Diagnostic dilemmas continue to be a significant part of the challenge of working in Lesotho for the Physiotherapy and Outreach Program. Identifying conditions without medical background information is difficult enough, but it’s only the beginning of tackling the complex issues that surround the barren landscape of disability health care here. Trying to find a positive way to use a diagnosis which will benefit children and their families without them losing all hope is testing me to the maximum. I wish that I could offer the two boys I have seen over Easter more, but all I can do is use what we have to do the best I can. 

 

Blog 47: Repair Shops and Workshops

I go to Bloemfontein with the occupational therapist on the hunt for wheelchairs, he has stuff to pick up too so is happy to drive my car and be my guide. After a tedious interval at the border doing lateral flow tests, it’s a smooth 130 km to the city and a rather hot and not very successful foray for wheelchairs. There are plenty of chairs but only in standard adult sizes, so I only get one for the biggest boy. I also manage to get crutches, foam for seating and yoga mats for padding, so the journey is not wasted. I use donations I have been given from folks back home to buy the equipment and I have more money to make further purchases. Next time I will ensure I order wheelchairs of the correct size from the shop so they are ready to be picked up when I visit Bloemfontein. 

 

When I give the boy his new wheelchair, see his smile and the way he spins the chair on the spot the day trip is worth it, especially to alleviate the nerve damage down his arms which the old chair was causing him. Although the old chair is shocking a couple of enthusiastic teachers reckon they can bolt it back together and cut down the sides to stop it impinging the nerves under the next users arm pits. They manage to achieve this, then it’s up to me to pad it using contact adhesive and yoga mats and cut the foam down to size for cushions and a back rest. The jobs a good un, ignoring the bolts and screws sticking out at the back but these are mere aesthetics. 

 

Pleased with how the repaired chair has come together I have just the boy in mind for it who has a terrible scoliosis and is currently using a wheelchair with just a bit of plastic canvas for a seat and no back support or footplates. Unsurprisingly he has terrible back pain. Passing by Saint Angela on Saturday morning I spot him and tell him I’ll bring the wheelchair over, within a flash I am surrounded by half a dozen children asking about other possible repairs to their equipment and I come back with tools, contact glue and yoga mats. 

 

I knock on Sister’s door and tell her I am here to do some repairs. Standing on her doorstop with a rucksack full of repair bits it’s a fait accompli so she says okay! Outside in the yard it’s a bit like a TV program called The Repair Shop where people bring broken items of sentimental value to be fix by a team of experts. Actually, it’s not like the Repair Shop in that I’m not an expert, barely have any tools and the items are vital for these kids’ lives and independence rather than just of sentimental value. The only similarity is most items are broken and look worn out beyond repair. 

 

The first fix is a simple one, just replacing a crutch tip. Next, I provide a boy with shocking lower limb contractures a knee cushion, purchased in Bloemfontein with him in mind. His knees have become so locked together I’m not sure how he manages to go to the toilet or attends to any personnel hygiene. The cushion provides a soft wedge between his knees to hopefully keep things deteriorating further but his broken-down wheelchair is adding to his problems, and I must replace it as soon as I can find something more suitable.

 

Next, I pad the handles of a girl’s crutches with strips of yoga mats and contact glue. Her hands are being wrecked by the hard plastic handles of her crutches. After that I attend to the boy who is getting the recycled wheelchair. The seat and cushions are a comfortable fit but there’s something wrong with a front wheel and it’s very hard to self-propel. The boy insists we take it off, and feeling I might regret this, I oblige to see the last bit of thread holding the internal rod disintegrate in my hands. Now having only three wheels left we are joined by a couple of other children who also only have three wheels left on their wagons, so three wheelchairs with only 9 wheels between them, great!!

 

I call for help. The care worker has a bag of bits and a screwdriver. Using these additions, I take the wheel off the boy’s old chair and use any bits I can find that are less broken, I replace the shredded internal workings of the wheel from the recycled chair. Somehow it works and goes around, for how long I don’t know. 

 

“Mme Jan, I want to thank you” the boy says softly as he has watched me battling with rusty bits of metal for the last hour. He’s a teenager still at the primary school, desperate for an opportunity to read and write. His body is more battered than his old wheelchair and he is in constant pain, yet still has a smile on his face. He’s worth any help I can give him. The care worker has some oil to smooth the wheels workings and also thinks he can sort the other two cheap Chinese chairs whose wheels have fallen off. That’s a relief as without them the kids can’t get to school, but as the ground is so rutted its likely they will soon all be in bits again.

 

The environment these kids must battle with every day is ridiculous. Back at the primary school the principle shows me the disability toilets that have been built by the ministry of education. They’ve never been used as there is no access to them. The ministry said it only had money for the toilets, not paths so the toilets remain monuments to inappropriate environment they are surrounded by and the lack of thought and care about the needs of children with disabilities. The lack of planning and knowledge goes all the way to the top in the Lesotho government and to try and raise of these issues is one of the reasons for the workshop we hold with stakeholders on National Cerebral Palsy awareness day on March 25th. 

 

The build up to this day has gone on for weeks. There are certain ways of doing things in Lesotho, etiquette of the ways invitations must be sent and who must be invited. I have no idea about how to set about this, but fortunately Thato does and launches an administration marathon. There is also food and caterers to organise, as a workshop without lunch would be a disaster, sweets, things to put sweets in, notepads, pens, flip charts, the list goes on …

 

Adding to complications in the last few days we finally get an invitation from the department of trade for an interview to register as a non-profit company. Without this registration its hard to work with other organisations and government agencies. We pick up a letter from the lawyer and zoom down to department of trade and wait for an hour to be seen. It doesn’t go well. The interviewers are not impressed that we don’t have an office and even less impressed that we don’t know about article 15 of the non-profit organisation registration act. I try to move my eyeballs to look at Thato, without turning my head, to see if she has any idea how to get out of this dilemma. 

 

Thato apologies and says we will research this area a little more and rewrite our application and hand deliver it tomorrow. We add this to our list of things to do, including making a short film of a seven-year-old boy with cerebral palsy who is one of the few youngsters with CP in Lesotho with a chance to go to school. The registration letter is delivered for the second time, and the film about the boy made, despite a near catastrophe when I fall over an unnoticed potty in the corner of the classroom and nearly bring down the flimsy barrier separating his class from the adjoining class. I recover my balance in time to avoid squashing about 30 children and adding them to my physiotherapy list.    

 

The day before the workshop we go to the venue, which is at the Lesotho National Federation of Organisation of the disabled LNFOD. I’m not impressed. I thought they had a proper conference room big enough to comfortably fit 25/30 delegates, not a small room filled with boxes and a filing cabinet. It’s too late to change anything so we remove the boxes, which immediately improves things, but find they only have 15 chairs and a projector which won’t link to our laptop.  

 

We must go into town to find chairs, bottles of water and all the other last minutes things we need. The driving is a nightmare for me, even though I am now a veteran of going through red lights and tussling with local taxis drivers at free for all junctions. We find some chairs at last and all the other stuff we need but no projector. We return to LNFOD with the chairs but they are now holding a meeting in the room so we can’t go in, set up the room or test the projector again. We leave and go to Selemela, an organisation we are linked with who are blessed with a large office space, two projectors, numerous laptops, dozens of spare chairs and only one person using entire building when we enter mid-afternoon. 

 

Thato and Ntseliseng are obsessed by the chairs, which are far nicer than the ones we have hired.  I am obsessed by the two projectors, as my presentation and film need one to play. After an hour, trying both projectors and different combinations of laptops and flash sticks and the help of the guy at Selemela, nothing works. It’s gone 5 o’clock getting dark and we leave with both projectors, a laptop and a load of stress. We pick up another laptop from Ntseliseng’s friend and return to the guest house to try again. Thato’s husband, Justice, adds his projector to our stash and finally after 4 projectors, several laptops and flash sticks, we get a combination that works. 

 

Exhausted we get a few hours sleep before being up with the lark to print off programs and set the venue up before registration at 8.30am. I find that Thato and Ntseliseng have got a local driver to bring the nice chairs from Selemela and we are now blessed with more chairs that we need. It’s a frantic rush to set up everything up on time but as usual in Lesotho everyone arrives late so we need not have worried. Most people are not more than an hour late, so it’s a positive triumph and one teacher even arrives early. When I asked Thato who she is, Thato tells me she was a teacher who arrived half a day late for a training event I ran a couple of years back and I refused her admission. Obviously, this time around she was a lot keener to attend!

 

The event goes well, with quite a lot of emotion from a couple of the mothers of children with cerebral palsy who give talks, and some useful feedback from representatives of special education. Apart from my talk on understanding the medical background to cerebral palsy, most of the conference was held in Sesotho, so I don’t know the specifics of what people were saying, but for such an emotive day it was best that people expressed themselves in their first language. In terms of raising awareness of what cerebral palsy is and the problems that children and their families in Lesotho face trying to access health facilities and education the workshop was a success. Thato did a great job getting coverage from the press and TV and much to my surprise I appear on Lesotho National TV saying something reasonably coherent in terms of how the physiotherapy outreach program empowers children and parents. A practical outcome was also achieved with a resolution by stakeholders at the end of the day to work more closely together and try to resolve issues like environmental access where combined efforts are likely to be more effective. A good result all around worth all the effort.  

 

Thato, Ntseliseng and I are both physically and mentally exhausted by the time its all over. We still have to clear up and take the hired chairs back, but we are happy that everything came together in the end. Everyone turned up, eventually, and took part to make it a positive, memorable, and useful experience with the media capturing it to give national coverage. The director of Mo Rate told me it was the “happiest day of her life”. I think for me it can be summed up by one word, “relief”. I find it much more enjoyable working face to face with children and families and would rather run a repair shop than a workshop any day. Sometimes, though, you need to go beyond the local community to be an advocate and hope that such events will add a little bit more awareness at national level and policies and attitudes will eventually become more enlightened. Now it’s its back to grassroots level for April and dramas of a different kind. 

Blog 46: I pray.

It is hammering with rain, and I am with Thato going to the high school for a meeting with the principal. There is a small girl from Saint Angela’s children home sitting in the muddy school grounds in her electric wheelchair, trying to shelter under a tree. The principal has forgotten our meeting and when we come out of the office we find the girl has moved from under the tree and is now in the full force of the rain with only her umbrella to protect her. There is no one else about and I realise I know this girl from years back, she is from Phelisanong children’s centre and has brittle bones. We hurry over to her and ask her what on earth she is doing out in this weather trying to hold back the storm with only her tiny umbrella. She says she is waiting for someone to open the front gate which is locked. The school front gate is the most direct way back to Saint Angela’s and the least bumpy of routes, vital for kids in wheelchairs. If the front gate is locked, they must go all the way around the back of the school and down the rutted side path which is like a motocross route. 

 

As we stand in the monsoon trying to work out the most feasible option of getting the girl back to Saint Angela without her disappearing in the muddy quagmire and her wheelchair blowing up, Todesi and Ntseliseng appear like a mirage in the 4x4, spot us and bring the vehicle around the back of the school to rescue. Todesi scoops the girl carefully into the back of the car and then with help of Ntseliseng gets the electric wheelchair into the boot while Thato and I hold umbrellas over the working party. Five minutes later we drop the girl back at Saint Angela and its mission accomplished. 

 

It is only a few hundred metres from Saint Angela to the high school, less to the primary school, but for children who are trying to make this journey in wheelchairs across the potholed ground, it is an expedition of epic proportions. The girl we helped yesterday is the only one with an electric wheelchair which she brought from Phelisanong, the rest of the children are in manual ill-fitting broken wheelchairs, which they must self-propel. When we meet the high school principal the following day and ask her why the front gate is locked and the kids with wheelchairs can’t get back by the shortest route, she tells us that some boys entered the school grounds with knives, so the gate needs to be locked due to security. A couple of the kids have been given keys, but they keep losing them, or they aren’t around when the keys are needed. Its just another tribulation the children at Saint Angela must face when trying to get an education in Lesotho.

 

Having an impairment is one element of being disabled but as the World Health Organisation recognises the environment you live in can either add or subtract from the disability you have. The children at Saint Angela are a very small minority of children with disabilities in Lesotho who have a chance to go to school, but every moment of their day is a battle to take advantage of this opportunity. They normally start school at an older age than other children and when they get there are rarely any facilities or extra help for them. This means they are always behind at school and sometimes don’t graduate until they are in their twenties, if they have the funding to get that far. 

 

Barely a week later I am standing outside the high school again with two of the boys from Saint Angela waiting to meet an Occupational therapist (OT). This in itself is a miracle as it’s the first OT I have met in Lesotho in five years. The OT is an hour late and we take the opportunity to learn about the boys’ aspirations in life, Alex wants to become a fashion designer, Kamo a psychologist. They have both been suspended from Saint Angela’s along with other children because they were late getting back for prayers when they were attending an extra study group. This means they now can’t attend school because their homes are far away and transport is too expensive and takes too long. These are children who are already behind, and with all the school missed during covid they are struggling to pass their exams. 

 

I have known these boys for the last five years since I’ve been coming here. They are really good youngsters trying their best to get an education. They have quite severe disabilities, and their wheelchairs are shocking and barely functional. I want to get them new ones with donations I’ve been given, and there are also two other children I want reviewed in the high school as their wheelchairs are so inappropriately sized that they are suffering further injuries. The OT has wheelchair contacts I don’t have which is why I want to meet him. Kamo had already been sent back home from Saint Angela after being suspended, but Todesi fetched him early this morning so he could meet the OT.  The OT is an hour late but redeems himself by bringing a second-hand chair from the ministry of social development which fits a girl we assessed the previous week. She was in an adult wheelchair so big for her it was impossible for her to reach the wheels to self-propel and gave her no support for the scoliosis and hip deformities that twist her body. 

 

The OT has nothing for the boys, and it looks like we will now have to cross the border and go to Bloemfontein if we are to find anything that will help them. Apparently, the ministry of Social Development has admitted the whole referral system for assistive devices has broken down. This means you either have to go private, if you have the money, or hope someone dies and you can inherit their chair. The result is most of the children don’t have wheelchairs that fit them as they usually get a donated or second-hand ones. On top of this the ground is so rough the wheelchairs are quickly wrecked. The school does have ramps but not one of them is set at the correct angle which allows the children to independently self-propel up them. The ground that surrounds the schools is a mixture of rough grass and muddy potholes that make any form of travel across it an endurance test.   

 

Meanwhile the damage done to the children’s bodies in their ill-fitting wheelchairs continues every day and they have no physiotherapy to help them. There was a good physiotherapy room at Saint Angela that I set up in 2016, with equipment that had been donated to the centre but never used. When I left there last time in March 2020 Thato and Ntseliseng continued to run regular physiotherapy sessions and an outreach program, visiting the children in their homes, helping improve access with appropriately built ramps and helping build keyhole gardens to improve their diet. Sister became increasingly obstructive about the physiotherapy sessions at Saint Angela and in the end stopped them altogether, no reason was given. All the work was done absolutely free. Staff joined in a training course which I ran and was paid for by the project and during covid the project paid for the Red Cross to come into Saint Angela and run a hand hygiene and covid awareness course for them. 

 

Back in the UK I emailed Sister for an explanation, but none was given, she even said we weren’t allowed to visit children in their homes. As we pointed out she had no jurisdiction in this area and as long as the parents gave permission there was nothing to stop us, besides, why would you want to deny the children these benefits? As we no longer had access to the physiotherapy room at Saint Angela, I messaged the team to withdraw our equipment from the room and informed Sister they were coming to collect it. When they arrived the room was locked and the equipment left outside, minus 7 brand new pairs of crutches which I had paid for with donations when I was there in March 2020, apparently, they could not be found.

 

Now the physio room has been shut for over a year and the children spend all their days in broken-down ill-fitting wheelchairs. As I am staying in a guest house ten minutes from Saint Angela, I see them every day battling back and forth trying to get to school on time. Apart from a brief conversation with sister asking permission to visit Saint Angela soon after my arrival in December just to say “Hi” to the kids, I have not spoken to her. I see no point, on top of everything the child protection issues at Saint Angela are so bad I want no part of it, but I still want to help the kids.

 

The special needs teacher who was supporting the high school kids at Saint Angela with after school extra curriculum lessons approached me as to whether I could support these lessons. She has fallen out with sister after not getting paid. I agreed, but even this is not simple as the kids have to get back for prayers at 5.30pm or get suspended. They don’t finish school until 4.30pm and then have to allow at least 15/20 mins to negotiate the terrain between the high school and Saint Angela to get back in time, so only leaving about 30 mins, at best, for lessons. I don’t know if this will work out and I don’t want them to risk any more suspensions. 

 

Last week we went into the primary school after speaking to the primary school principal. They have 27 children there with disabilities, 22 of them from Saint Angela. The school is over pressed and poorly funded and on top of this they have a large cohort of children with disabilities that they have no extra help or facilities for. They are desperate for our help, but at the same time realise this could bring them into conflict with sister. The nuns are very powerful here and could make their life very difficult for the teachers and the children. 

 

We begin our assessment of the children, at the least we hope to pass on some useful information to the teachers which will allow some understanding of the problems these kids have trying to learn. At the best maybe we can run a lunch time physio club for the kids, get them out of their wheelchairs, get them a bit fitter to maintain and improve their fitness. We can also provide some of them with APT chairs to support their learning in class. If you haven’t got good seating and posture in class, it is very difficult to learn anything. Two of the girls we see have dyskinetic cerebral palsy, which is a type that causes involuntary movements all the time. These children need a good base of support to help reduce their movements and increase their ability read to write so we will supply them with appropriate chairs.  

 

The assessments are difficult as we have no medical background on these children, and the histories the children are able give us are often limited and confusing. Most don’t even know their birth dates. What we can see is that for most of them everything takes extra time and activities like going to the toilet are particularly difficult and often mean they need to go back to Saint Angela’s to use a suitable toilet.  Rather than make this trip a lot of them try not to go to the toilet all day with the obvious problems that follow. 

 

Some of the children are teenagers and are still in primary school. I speak to one girl who has upper limb weakness and poor coordination of the hands. It takes her ages to wash, dress and undress, but she has no help from the care staff at Saint Angela’s so must get up in the early hours to start preparing for school. Apparently, there are 44 children at Saint Angela’s, well beyond their bed capacity, and only 3 care staff. These staff are supposed to not only look after the children but the chickens too and have to get up in the early hours to start boiling water to sterilise it as the water has been cut off because the bill has not been paid. The showers don’t work, and the cook has no running water. 

 

Many people have tried to help with the financial crisis at Saint Angela but to no avail. Staff have left because they haven’t been paid or fallen out with Sister and projects like the greenhouses and bakery no longer operate.  Ultimately the mismanagement does not affect the nuns of Saint Angela as they live there for free, and their financial needs are catered for by their congregation. Even trying to change tact and help the kids outside of the grounds of Saint Angela is difficult because of the long obstructive arm of Sister and whatever drives her, reaches out to interfere.  

 

Some of the kids have had their specialist Shona quip wheelchairs taken by Sister and given a cheap Chinese one instead, invariably too small. I am concerned if I get the boys new wheelchairs, she will take these. I’m worried if I support the extra lessons, she will find a way to suspend the kids again, and that she will make trouble for the primary school if we try and help over there. Last year the police were called after Sister beat one of the boys so badly his ears were ringing for weeks after. Sister wasn’t in residence when they called and no follow up ever happen. Even if Sister disappeared and was replaced, I don’t think this would help as the last Sister also beat the children and was equally neglectful of their care.  

 

The ministry of social development and ministry of education appear not to care as they have no other place to put these children and don’t like dealing with the nuns. The children here don’t know any different and are just grateful to have this small opportunity to have an education. They love Saint Angela because they have friends here, at home most of them are isolated and stigmatised. When I first met the present Sister in March 2020, she seemed pleasant and caring of the children and I really hoped that Saint Angela had finally turned a corner and the children would get the care they deserved. This was all an illusion, as time passed Sister showed her true colours. All the stories I hear have common themes, Sister does not care about the children, she neglects their welfare, she has no heart, and she is obsessed by the children praying. What these prayers are for I don’t know, deliverance from suffering maybe? 

 

Some people believe that suffering on earth brings you closer to heaven. I do not believe that. Suffering is suffering and if you have the capacity to alleviate it you should. The facilities at Saint Angela should offer a great resource for children with disabilities to be supported in their education and welfare. I pray that someday this potential will be realised, and the children will not have to endure anymore needless suffering and neglect when Saint Angela could be an environment that supports a brighter future for them. Meanwhile my prayers are not enough and if there are more practical ways of supporting the children I will continue to do my best to provide this support by whatever means possible.    

  

 

 

Blog 45: A life in a week of the Physiotherapy and Outreach Program (POP).

Monday. 

Most days I am awake by 6am and after doing some necessary morning things I usually check the room where we are doing APT, turning boards over to make sure they dry on both sides, touching up paint, sweeping up mess etc. Today its not long before I need to go and do jobs in town and I leave Thato and Ntseliseng to continue with APT, battling with a small chair and table which they have just started. 

 

Todesi takes me to the British High Commission (BHC) to call Barclays bank for the fourth time to chase my money which has been missing since the 14^th of December and been back and forth to Lesotho FNB twice. I was told 10 days ago it now resides somewhere in Barclays bank but it has not yet reflected in my account. After 30 minutes waiting in a queue, I am put through to Jack from Global Payments, get very emotional and lodge a formal complaint against Barclays. Jack asks me how this complaint can be resolved, and I say by giving me my money back. Miraculously by the end of the afternoon this has happened. 

 

I am forever grateful to the BHC for their help and take the opportunity to ask the high commissioner if she should bump into the principal secretary of social development could she ask if she has had time to consider our letter of request for workshop space for APT, hand delivered 3 weeks ago. By the end of the afternoon the BHC comes through again, speaks to the minister who says no problem if the Director of Disability can produce an MOU on the matter. 

 

Next stop of the morning is a medical supply shop to pick up bags for the boy with the stoma who has been using nappies instead of bags as they are very expensive, and he has lost all his medical records and social development number which might have been able to help them be supplied with them for free. A friend has given me a donation to help him and it costs nearly £95 to buy a box of 30 bags for him. We then go to Pioneer mall to buy some necessary things like receipt books, then to Maseru Mall to pick up supplies of waste corrugated carboard from Game, before making our way back to Ha Pita. We stop at the boy’s house to deliver his bags and Todesi translates my questions. 

 

The boy lives in a one room hut with a carer who looks after him and his little sister while the mother works in South Africa. The carer is very quiet and subdued and I don’t think has any influence over the boy at all. Most of the room is taken up by a double bed. I ask the boy how he has been getting on and if he has been taken his medicines. The boy is evasive, and I ask to see his medicines. It is apparent from the quantity left he hasn’t been taking them. I ask to see the wound in his foot, which looks as bad as before, a deep hole surrounded by necrotic tissue. The boy says its much better. I ask him about his stoma and how he is getting on using the bags. The boy is evasive again. I ask him how many bags he has left he shows me a bag of 10 which was how many bags we left him. 

 

I ask him why he is not using the bags, and he can’t give me any answer that makes any sense. Then he suddenly decides to use a stoma bag, cuts a hole in it of the appropriate size, lifts his shirt, unties the tatty piece of string around his waist which is holding the nappy in place and shows us his stoma, a large piece of gut protruding out of his side. He seals it with the bag and the job is done. I have a word with Todesi and he agrees that he will check on him every day from now on to make sure he is using the bags, taking his medicine and has the best chance of healing his wounds by the time we take him for his medical review in couple of weeks’ time.

 

I don’t know what is going on inside the boy’s head but feel he must be severely traumatised by everything that has happened to him and maybe he is in complete denial. Previous encounters with the medical profession have resulted in major operations, removal of body parts, loss of function and independence. I doubt if any of this makes any sense to him and feel that presently he does not have the capacity of making decisions in his best interest and we must try and provide some guidance for him. By the time we get back the best part of the afternoon has gone and after doing a bit of APT is time to drop Ntseliseng off and take Todesi to where he can catch a bus, before going back home to join in with grandma’s birthday celebrations, eat some cake and test out some dodgy dance moves.     

 

Tuesday. 

I wake with great relief knowing that I no longer need to factor into my life any more battles with Barclays bank. We spend most of the morning doing APT, myself and Todesi making the large boards out of three layers of corrugated cardboard, glued together with flour and water, while Thato and Ntseileng continue with the current chair in production. As we don’t have a proper workshop with a workbench, cutting pieces out accurately often seems to go wrong, or maybe it’s just we need more experience in the processes.

 

In the afternoon we leave Thato writing a letter to the Director of Disability while Todesi, Ntseliseng and I go on visits. The first two children we visit have quite severe physical and intellectual disabilities. Both mums are part of part of the administration of the Lesotho cerebral palsy group, Mo-Rate, that we are working with. We have brought a sample APT chair to demonstrate what we can make and sit the children in to measure them up for their own bespoke chair. 

 

The mums are impressed and hopefully if we can get a proper workshop space they can come to training for APT and help make a chair for their own child. Their children will both need a reclining seat, due to low muscle tone and lack of head support. We have only made chairs at 90 degrees up till now am I unclear about the processes needed to build a reclining chair which looks a lot more complicated. 

 

We finish our visits with a review of a seven-year-old boy who is very smart, and I enjoy having a bit of a banter with. He might not be able to walk but his intellectual ability is way above the average seven year. He speaks fluent English to me and tests out some French and Chinese with me as well as showing me his prowess at maths. Its late afternoon when we get back, I have something to eat, do my notes and it’s time for bed. 

 

Wednesday 

Thato and I quickly send some necessary emails before setting off on some follow-up visits to children in Morija. We were last there in December and the roads were bad then but now they are even worse after some brutal downpours leaving potholes and deep ruts filled with water. I’m so glad we now have the 4x4 which makes relatively light work of the off-road situation. 

 

The first child we see has cerebral palsy, microcephalus, epilepsy, and bipolar disorder. She is looked after by grandma who last time was concerned by the child’s frequent episodes of constipation. As the girl spends most of her time reclining or lying, she has no help from gravity with her bowel movements, so I suggested grandma spend some time each day supporting the girl in a standing position to see if that might help. It has done, which is not only gratifying for the girl but also for us and grandma as by following advice from us grandma has been empowered to treat the girl herself without medicine. 

 

The next girl we see was having respiratory problems last time we saw her. Mum was particularly concerned at night when the girl was struggling to breath. When I examined the girl, she certainly had significant secretions in her lungs and a very weak cough which did nothing to help clear the secretions. Since the child had a long history of these problems, I thought it possible she might have cystic fibrosis or bronchiectasis. I taught the mother some simple chest physio and postural drainage techniques to carry out every day. Now the child is much better and produces a strong cough capable of clearing the mucus with much better expansion of the lungs. 

 

Passing on knowledge and empowering parents to look after their own child is what the outreach program is all about and whatever happens to the project in the future the parents we have empowered will always carry this knowledge with them. We move on to the next child. I haven’t seen him before and Thato tells me he has hydrocephalus and a shunt and is normally mobile, the family is very poor and struggles to put food on the table. We arrive and Thato goes to speak to the mum. She returns and says the boy is ill. I go and look through the door and see a half-naked boy with an enormous head rolling around on a bed moaning in obvious distress. The mother says he has constipation and can’t walk. I ask how long he has had constipation and she says two weeks. I ask if she has been to a doctor, and she says no.  

 

The boy is clearly very ill, constipation can cause problems with children who have a shunt as it can raise intercranial pressure. Children have shunts in the UK and require careful medical management. I never see children in the UK with the size of head this boy has, but in Lesotho children must go to South Africa to have a shunt inserted and management of their condition tends to be poor due to logistics, distance, and cost. I step back out the door and speak to Thato. One reason the mother may not have gone to the doctors is the cost. Thato thinks it will cost about 150 maloti to see the doctor and get medicine (about £7). We offer to pay that and take them to hospital. 

 

The mother doesn’t want to go to hospital as she says they always give the boy the same medicine which doesn’t work. She would rather go to see a nurse who runs a local pharmacy, which will be open later in the evening. We give her the 150 maloti and depart. Thato calls the secretary of Mo-Rate to follow up what happens with the mother and the need for a scan to review the shunt. Last year Thato tried to help another boy with hydrocephalus living in a difficult family situation. The boy died before he could get to South Africa for the treatment he needed.  

 

On the drive home Thato tells me that besides the money the reason the mother didn’t want to go to the hospital is the discrimination that parents of children face from hospital workers. Often their attitude to parents is along the lines of “Why are you bothering us. Your child is going to have a short life and die anyway so go away”. I am shocked and think how intimidating this would be for someone with little education or money, you would never take your child to hospital when faced with such attitudes. It’s a sobering drive home    

  

 

Thursday

In the morning we have a meeting with the director of the Lesotho National Federation of Organisations of the Disabled (LFOD). We want to raise awareness of Cerebral Palsy with them and try to get a national platform to increase knowledge of cerebral palsy, change attitudes and ultimately bring pressure for policy changes in health, education, and social care (always best to aim high) 

 

We take our prototype APT chair with us to throw that into the mix too, and because it travels everywhere with us. Its presence eases us into the meeting being a brightly coloured inanimate object of no political leaning. The Director of LNFOD is blind, so I lift it onto the table for him to feel and he seems impressed by its sturdy construction. This done we move onto the more delicate subject of the LNFOD meeting with Mo-Rate the previous year which went rather pear shaped. Several political hand grades go off and we take cover before it is decided the fault lay with the minister of social development, who is not in the room to defend their actions. Previously she directed Mo Rate to have a meeting with the intellectual disability branch of LNFORD, Mo-Rate rightly pointed out that Cerebral Palsy is a movement disorder, and the meeting went sour after that point. 

 

Once the dust has settled, I try to explain that Cerebral Palsy is a movement disorder although there are sometimes other associated disorders like an intellectual disability, but these kids can also be very bright. Happily, I have the recording of the very smart seven-year-old on my phone, made the previous day and the point is succinctly made. It is agreed it might be best to raise the understanding of cerebral palsy in relevant parties and give a talk with members of Mo-Rate to raise the capacity of LNFOD, Minister of Social Development, Education, and Health, influential doctors and nurses etc 

 

The hopeful outcome of this will be that Mo Rate will be invited into the fold of LNFOD, the health system will educate its workers and change attitudes towards cerebral palsy, the political, social and education environment for people with cerebral palsy will improve and the association of witchcraft and curses with cerebral palsy will be a thing of the past. We can but dream…

 

We get back do more APT and then Thato and I have a meeting with Kathy, the CEO of Glasswaters on google chat, the Canadian charity who are supporting the outreach program. We are trying to put together a strategic plan which will then inform the budget for the next financial year. Sometimes strategic plans are difficult to align with all the variables that are happening on the ground, but boards need to be presented with this kind of information. We do our best to put something together that will inform the work we are doing, plans for the future and expenditure needed to support our goals.    

 

Friday

A frustrating morning trying to work out the measurement for a reclining APT chair.  Thato seems to have some sort of plan in mind, and I leave her a Ntseliseng to it while I make boards with Todesi, finish the first newspaper covering of one chair, paint and varnish another.   After throwing together a late lunch of peanut butter sandwiches for everyone I remind Thato and Ntseileng we have a meeting with Mo-Rate in town late afternoon. Thato has become obsessed with the reclining chair, and I have to drag her away so we make the meeting on time. 

 

The ladies of Mo-Rate are excited by our progress and future plans for APT but even more thrilled by our meeting with LNFOD the previous day and a chance for a way forward and future representation with the organisation. We agree that March 25 might be a good date as March is national cerebral palsy awareness month. The ladies tell us more horror stories of the way children with cerebral palsy and their parents are treated in hospital.  The lack of knowledge medical and health staff have of this condition is shocking, so the need for national platform to disseminate information is great. We depart for the weekend

 

 

Saturday 

First thing in the morning I can’t resist a fiddle with the reclining chair but before I get carried away Thato tells me the Director of Disability has sent an email saying they can’t do an MOU with us because we are not a register organisation. We try to instigate some rapid action on this matter, as we urgently need a workshop for APT, but we need a lawyer for registration and it’s not straight forward. 

 

I then decide to start a power point presentation for LNFOD in March, before realising it’s been so long since I have done a power point presentation, I can’t remember how to do it. Microsoft add to my problems by sending me a message telling me I need to renew my subscription. I try to do this, but it doesn’t work because Microsoft are confused by me being in Lesotho. I give up and do APT in the afternoon while trying to keep up to date with the text feed for six nations rugby. 

 

Sunday   

I try again with my PowerPoint presentation before getting called away by a boy arriving from Saint Angela who I talked to in December about getting a new wheelchair as his is being held together by strands of wire. Thato helps me measure him up then I return to the power point presentation, with better success. 

 

In the afternoon I get drawn back to the problem of the reclining chair and try to stabilise it with paper rods and cardboard brackets. I can’t believe I used to order high spec chairs that would miraculously recline to any desired angle at the press of a button. Still, they did cost around £2000 to achieve this feat. Altogether it hasn’t been a very relaxing weekend as there’s been too much going on with work, hopefully next week we will get on top of some of the ongoing administration issues and be able to focus more on the outreach program. The sun sets and I go to bed, dreaming of mountains of cardboard slowly transforming into beautiful chairs… 

 

Blog 44: Sixty !

Its January 28^th, it’s my birthday and I am sixty years old. I look back on my life and I’m amazed I’ve made it this far and that I’m lucky enough to be in Lesotho and in a position to build on the work I have been doing for the last five years to make a difference to the lives of children with disabilities here.

 

The previous day I arrived at Morija guest house late in the afternoon after a meeting with a lady called Tasha who is part of a recycling plastics project and works as a volunteer with a youth project called the Hub. Morija is the hip and happening place in Lesotho where artisans and interesting people hang out and futurist projects happen. I meet Tasha because I’m hoping that her recycling plastics can be widened to include cereal packets and thin card packaging. We need it to make brackets and rods to strengthen the cardboard furniture we are making for supportive equipment for children with disabilities, but I’ve something on my mind too. 

 

Making APT equipment is very time consuming and although I need to learn the processes involved it is not the best use of my time, I need to pass APT skills on to other people so I can spend my time focusing on physiotherapy, assessing, and treating children and training carers and people involved with the project. I would like Tasha and her associates to set up an APT workshop, so we can send in orders and measurements as required and parents with children with disabilities can buy the furniture. It fits with Tasha’s and the Hub’s ethos of recycling and raising environmental awareness, as well as being a potential business opportunity for them as APT can be used to make many products. If I can also raise awareness of children with disabilities and the issues surrounding this in Lesotho it’s a win, win all around.

 

Tasha gets it immediately and is interested, besides already having collected a load of thin cardboard for me. It is such a relief to get a positive response from someone with ideas of how they can help. We are still waiting for the ministry of social development to get back to us after requesting workshop space from them. It’s an empty building and all they need to do is say yes, but so far there has been no response to our letter of request hand delivered. These things take time and with the present space we are using being part of a building site for new accommodation, time is something we don’t have. Tasha says she will see if she can press some buttons with the contacts she has. 

 

After meeting Tasha, I go five minutes up the road to the lodge I am staying at and meet the owner Bridget and have an evening meal with her. Soon we are talking about APT and the protype chair I am carrying about joins us for the meal while Bridget enthusiastically dives into her recycling bin and tries to find cereal boxes for me. After setting up the lodge here over thirty years ago with her late husband she knows exactly the trials and tribulations faced when with working with any government organisations here. Doing voluntary youth work herself and with relatives working for NGO’s she also knows the stresses faced when trying to justify budgets to project supporters and produce statistics for strategic plans which tell nothing of the individual stories or unforeseen obstacles encountered every day. 

 

I discuss with her the case of a boy with a seriously infected foot that we have taken for private medical care. On route in the car, trying to take a medical history, I discover he also has a stoma, after an operation went wrong and left him with no bladder and bowel function. Only he doesn’t have any bags for his stoma and is trying to use a nappy instead so also has an infection around the stoma site as well as his foot. His mother is in working in South Africa and seems to have virtually abandoned him, he has no money to go to school, secondary education must be paid for in Lesotho, unless you can get help from the ministry of social development and for that you need a case number, which he doesn’t appear to have. In fact, he doesn’t appear to have any medical records despite having two major operations, having already had one leg amputated and a stoma. He has lost his bokana (a small medical records book issued at birth) and apparently, Maseru hospital, where he had his operations has lost most of its electronic records. The government hospital was in partnership with a private medical group, but the relationship went wrong, and the group pulled out with all the computers and the medical records which went with them. 

 

After spending all morning at the private clinic getting his wounds cleaned, we go to buy him some bags for his stoma. They are relatively expensive at 62 M each, hence why the boy is trying to make do with nappies. He could apply to the ministry of social development for help, but he doesn’t have a case number (see above). We buy him some bags and the following week go to the ministry of social development to see if they will supply him with bags or have a record of him, as originally he was supplied with bags by them. 

 

My heart sinks at the endless queue of people outside waiting hopefully to be seen, fortunately Thato says something magical to the man on the door and we go straight through to see a very bored looking administrator who looks like she has been welded to her seat for the last five years. She doesn’t bother checking her computer for any records and says we will need to get a birth certificate for him if we are to get him a social development number. This seems unlikely to happen even if the mother does return from South Africa in December and decides to become more proactive in getting him the care he should be entitled to. 

 

On top of all his physical needs this boy needs social and psychological support. He didn’t tell anybody about the wound in his foot because he was worried his leg would be amputated and he has been equally reluctant about sharing the problems with his stoma because he is a teenage boy and how can he share such matters? Brigitte nods, the story is not unusual she and says she has a friend in the village who had an accident and needed a stoma, and his bags are now paid for by a friend in America. So often these tales are the same, if you have no means and can’t get outside help you are doomed. 

 

I wake in the morning wondering about how to get APT workshops set up, how to help the boy with the stoma and how on earth I can see at 70 families by the end of the year and give them any quality on care or follow up visits with all the other things I need to do. 70 was the figure I was pressed into giving in a strategic plan, having already said that 100 families was unrealistic. Brigitte just laughed when I told her last night and thought I was being ambitious trying to cover 30 families in Maseru and set up APT workshops. 

 

One thing that has recently happened to assist with these with these unrealistic forecasts is earlier this week I finally purchased a car. This has been a long running saga when money I transferred out here from my Barclays account on December 13^th was sent back by First National Bank (FNB) because I incorrectly transferred it in Rand rather than Sterling. The money has never been retuned to me since. The matter has been complicated by trying to contact Barclays from abroad on a mobile phone which I need to top up with scratch cards and so by the time I have been waiting in a queue for at least 20 minutes I’ve either run out of credit or signal. FNB consistently said that they returned the money on December 14^th but eventually after many visits and phone calls I find out they didn’t return it to the 29^th of December. 

 

The British High Commission (BHC) help me out with the use of their phones to call Barclays at the beginning of January and Barclays say they will launch an investigation. The following week I am back down the BHC and speak to Barclays again who said FNB has sent it back, but it was in a “holding bank” and should be returned to me soon. On the back of these reassures I send out a second lot of money to buy a vehicle. 

 

The following week I go back down at the BHC again and Barclays inform me my money has been returned but they have sent my money back to FNB because something was wrong with the reference detail. I don’t know whether to laugh or cry. “After waiting nearly 6 weeks for my money you have sent it back to FNB?” I say incredulously. Kevin from global payments updates my case and then informs me my money has now been sent back from FNB and resides in Barclay’s back office and legally should be sent back to me within 6 days. I wonder why an electronic transfer can’t happen immediately as whenever I make a payment on my Barclays Visa card in Lesotho it reflects in my Barclays account within a minute. Kevin says he doesn’t know but will call me and check the money has been reflected next week.

 

Meanwhile the second lot of money I have send out arrives within 3 days, I purchase a 4 x 4 which has good ground clearance, tyres with tread on them, brakes that work, doors that you can open, no strange under carriage noises and most magnificently aircon. We can finally visit children in a degree of comfort and safety, without feeling utterly battered by a local taxi that is unfit to drive on tarmac, let alone off road. I also feel liberated by having my own transport again, even if I am not yet brave enough to face downtown Maseru traffic as the Honda CRV is somewhat wider than I would prefer to drive with a detached retinae in my left eye. I feel so good don’t get completely stressed out by not hearing again from Kevin and not having my money reflected into my account from Barclays as promised. It looks like next week once again, I will have to return to the BHC, borrow their phones, and continue the saga of trying to get my money back from Barclays. Another stress and another draw on my time. 

 

Anyway, as it’s my sixtieth birthday I try and put all these things aside, go for a hike to see some amazing dinosaur prints, take a swim in a rockpool, realise I have lost my sunglasses, hear a thunderstorm approaching but think I have enough time to go back up to the prints and see if I left my sunglasses there. The storm hits me as I arrive back at the prints and my life is in danger, lightening is serious business here with over 250 people estimated to die a year in lightning strikes in this part of Southern Africa. I realise plastic sunglasses are not worth dying for and run for my life back to the lodge. I dry off and recover for a dinner with Bridget, a couple of friends from the village and a couple of young guests. After a tasty and convivial meal, I get my sax out and we have a magical moment of musical connection and fun as people join in banging and shaking whatever they can find to make a rhythm section. Deep conversations follow about the joy of music and art. I go to bed very happy. I won’t forget my sixtieth birthday. Tomorrows another day and battles with Barclays and the ministry of social development can be put on hold for a short while as I mark a significant milestone in my life with a little celebration   

Blog 43: Of Covid and Cardboard

It’s the week before Christmas and I’m crawling around on the floor with Thato trying to stick bits of carboard together. I’m feeling rough and it’s not helping that the flour glue we have made is not working and looks nothing like the man on the You Tube video says it should. I’ve had enough, it will have to do, I spread the glue over the boards with my hands, slap them together and go and lie down before I fall down. This appropriate paper technology (APT) is in theory simple and certainly cost effective but is going to take some working out if we are going to be able to use it.

 

APT has been successfully introduced in a number of low-income countries as a means of producing bespoke furniture and equipment for children with disabilities. In my previous job working with young people with disabilities in Powys teaching Health Board, I spent a lot of my time ordering specialist equipment for clients, especially chairs and standing frames. Such equipment is vital for children who need postural support to sit and stand up. It costs thousands of pounds but if it can be clinically justified it is normally provided by the health board. What I didn’t do was make it myself, I’d get a rep in to demonstrate the equipment, measure up the client and suggest various options and accessories.  

 

In the past I have managed to bring in some specialist equipment into Lesotho, but ultimately this is not sustainable, especially as children get bigger and grow out of it. Many of the children with cerebral palsy we have been visiting around Maseru cannot sit up without support. This means they are left either lying on the floor, or they are propped up with cushions in slumped positions which don’t support their spines, enable them to socialise, or allow them to be stable enough to use their hands. We need to find a way to make cheap and effective furniture out of flour, water, carboard and paper that will breach this gap, hence the present preoccupation with APT. 

 

The first step is to make boards by sticking corrugated cardboard together with flour glue to make a board about 2 cm thick. Each layer of corrugations is set at across the grain of the previous layer so when its dry two or three days later, you have something strong that you can start to make furniture out of. The client is measured, the various parts needed to make the item of furniture cut out, sewn, stuck together, carboard brackets and rods added and then the whole thing covered with a couple of layers of paper. Head rests, removable tables, foot raises, and various accessories can be added, seat and chair backs tilted and adjusted as needed. Finally, you should end up with a very robust, specialised piece of furniture for the cost of some flour. 

 

The next day we finally manage to solve the glue problem, chuck away the previous days cardboard away, which hasn’t stuck, and start again, this time with much better results. We leave our boards weighed down with various boxes to dry. My throats on fire and I decided to take a covid lateral flow test. I’ve brought a bunch with me after taking them twice a week for the last 18 months as an NHS worker, always with negative results. 

 

I’m not surprised that within a few seconds it shows I’m positive. Over the last 3 weeks I’ve visited 17 families, been to various meetings and events and shared numerous local taxis. People do wear masks and the major shops and businesses are very keen on hand sanitiser, but there is little testing here, few are vaccinated and basically people carry on with life regardless of any covid symptoms. There is little option when you live in poverty and there is no such thing as a furlough scheme. 

 

Considering I’ve had my injections and booster I am surprised how ill I feel, especially as my immune system is normally pretty good. For at least a week I feel wretched with a sore throat, cough, cold, loss of appetite and no energy. I can only conclude that after nearly two years of living a fairly sanitised life in the UK with numerous lock downs, social distancing and PPE, my immune system has gone to sleep. Eventually it remembers what it must do and fights back with the assistance of various plants and potions from the garden and a Lesotho cough mixture.  

 

Left feeling rather ragged from the experience I go away at new year to recover my fitness and get back my mojo. It’s no good starting the year feeling like a limp rag doll. Reinvigorated by the mountains and rivers I return to get to grips with APT so we can work with families with children with cerebral palsy to provide them with the furniture their children so desperately need. We have made a useful contact with the director of disability which will hopefully lead to being provided with workshop space in Maseru to set up an APT workshop, that’s the plan for 2022. With covid now behind me it’s now all about the cardboard, happy new year ! 