We have been driving down a corrugated dirt track for a couple of kilometres before we park and start to walk up a slope between some trees. The family we are going to see have apparently run away from the witches of Thaba Tseka and are hiding in the hills. They have done a good job finding this secluded spot, but we finally locate them in a small group of mud huts with the carcass of a cow lying outside. They are planning to eat the meat, but I’m not sure if that’s a good idea as it looks like it’s been lying in the sun for days and is more like biltong than meat.
The five-year-old boy is quite disabled but at least well-nourished and with no contractures. I am relieved, I have seen some heart-breaking cases of neglect and severe malnutrition during my visits in Leribe over the last 6 weeks. I have now visited dozens of families, guided by Mme Maja, I don’t know what I would have done without her help. The families are widely dispersed, and she is a genius at getting them to trek into central locations to meet us so we can be more efficient with travelling time. Having a child with cerebral palsy herself and from a humble background she has a grass roots connection with these families and an empathetic understanding that I can never replicate.
From September Mme Maja will be joining the physiotherapy and outreach team as the care facilitator for the Leribe district. She will continue to run a weekly carer to carer clinic from Motebang hospital for mothers with children with cerebral palsy (CP) and hydrocephalus, following them up with community visits. As CP is a lifelong condition this provides vital support for families, training them to provide the best quality care possible for their children and help them to avoid secondary complications as they grow older. Not only are there more children in Lesotho with CP, than in a higher income country, but they tend to be at the severe end of the disability spectrum and are therefore more at greater risk of contractures, dislocated hips, pressure sores and scoliosis. With few health care resources to help them their families need to have the knowledge to provide what home care they can for their children for the rest of their lives.
Mme Maja is one of the kindest people I have ever met, totally reliable, getting up at 5am every morning so she can wash and feed her son before we hit the road first thing. Her quiet guidance has got me through some dark hours and accepting sometimes there is nothing you can do except share a parent’s grief. A couple of weeks back we were huddled on the floor of a house around a paraffin heater trying to console the mother of a six-year-old, ravished by TB, emaciated, with only one lung functioning trying to sustain him with tiny gasps of breath, I doubt if he even weighed 8 kg. He was hanging onto life by a thread and sadly there was nothing we could do but share the mother’s sorrow, a week later he passed.
It is not always like this and there are many children who somehow beat the odds and many inspiring parents, grandparents and guardians who provide the best they can in the poorest of circumstances. I am uplifted by their dedication and the opportunity to help them with advice, treatment and equipment that really does make a difference to these children’s lives. Last week I was back in South Africa buying wheelchairs and crutches with donations from the folks back home. With covid restrictions now lifted in South Africa we crossed the border in record time. Coming back through customs was still problematic, but fortunately I had Ntate Ntsukunyane, the OT, with me who can smooth things over with the customs people who are always looking to make life awkward and get a bribe.
Ntate Ntsukunyane will now be joining the team in Maseru for two days a week to provide his professional expertise as Thato, the POP team leader, now leaves for a year’s study in Ireland to do her MSc. We will miss her advocacy for children with disabilities, project skills and connections. Thato has always been much better than me at the administration and presenting ideas in a way that is more likely to get them accepted. Recently she finely honed a bid for a grant from the British High Commission (BHC) for an initiative to improve the supply of assistive devices in Lesotho. This application is to set up a workshop and skills base for APT furniture at Abia high school. This is the high school where the children from Saint Angela go and where we have built a relationship with the principal and staff to support children with disabilities.
Hopefully building a workshop at Abia will prove a sustainable project by training the teachers and students to do APT, as well as providing the children with skills that they can use when they leave school. While it seems like the BHC is keen to support this initiative nothing is straight forward, as all small grants are presently on hold until the UK’s prime minister’s replacement has been elected. Fortunately, Glasswaters Foundation has stepped into the breech, and it looks like whatever happens this project will go ahead, and this year will see the building of an APT centre at Abia high school and the training of teachers and students with disabilities to produce bespoke cardboard furniture for children who need supportive seating.
Trying to support this development, while also moving to Holste in Leribe at the end of June life, means that life has been frenetic for me. I have now visited over 60 families in the district on the outreach program and assessed their children. On top of that I have had to return to Maseru 3 times for administrative matters, a two-day training program, visits to the schools and an equipment run to South Africa. I think things will now get easier as I have broken the back of the work in Leribe and from September I will be making follow up visits, which are always a bit easier than first assessments.
I am very happy with the way work has gone in Leribe. With Mme Maja’s help we have got into a good routine of visits and covered a lot of ground. Overall, the families I have visited in Leribe have been poorer than in Maseru, the children younger and the terrain more remote. As you can imagine working in the community in Lesotho is very different to my former job working in the community in Powys teaching health board and has taken some adjustment for me to learn what realistically can be offered to families and children that will benefit them.
I have made some useful local contacts and been able to draw on their skills to help families. The Motebang hospital OT is a prescriber for mental health and has been able to assist with some of the deficiencies of epilepsy medication here. Last week he joined us on a visit to a family we saw back in July, a very poor family with a son and daughter both with CP, whose parents are convinced they have been cursed by witches.
Their older son has severe contractures and spends his life hidden in the hut lying on a mattress. When I examined him on the previous visit, his hips were dislocated, he had open pressure sores on his buttocks and uncontrolled epilepsy, as like many children here once they get too big to take to clinic the medication stops. When we approach the hut, we all stand in amazement. Sitting outside is the daughter in a brand-new wheelchair, not only that but it’s a good quality one and fits her! Such a thing I have never seen before.
When the parents explain how this miracle came about it turns out that somehow, they have made a connection with the first Lady’s office, and it is her office that is responsible for donating the wheelchair. As national elections approach in Lesotho I cynically assume it is a gift designed to show the benevolence of the government to its people. After admiring the wheelchair and the daughter’s efforts to self-propel it, we examine the son. Thankfully his pressure sores have improved since I last saw him, and the OT is able to reinforce the education I gave to the parents and give a prescription to the mother for the boy’s epilepsy. She can now take the prescription to clinic without having to take the boy and obtain the medication he vitally needs.
The visit has been a success, hopefully the prescription will improve things for the whole family as they all sleep in the single room hut and boy normally has several large seizures every night which should now be controlled. As I gaze up from the mud huts to the distant Maloti mountains the vista is how I always imagined the outreach program would look. The condition of the children and what I had to offer them with few available resources was more of an unknown quantity. After nine months experience out here, I feel in a much better position to contribute advice and action that will bring about positive outcomes for children with disabilities and their families and change their lives for the better. We say goodbye and walk back up the hill to move on to the next visit, the next challenge…
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