Friday 11 February 2022

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 14th 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…