September 2022 circular: News of partnerships, community work, and the death of a worker
Matayo Katongole (Matthew). Compound attendant and workshop assistant. 25.4 1991 - 2.8 2022
We've lost a member of our Acheru family. As a boy, Matthew, a haemophiliac, was treated at Cherub. He was later employed at Acheru to take care of the compound and assist in the workshop.
There are 'high profile' jobs at Acheru, and also more 'ordinary' tasks which are nevertheless important. With all that goes on the compound could become very untidy so cleaning is an issue, and we are keen that everyone working there, whatever their job, can identify with the work and feel they are part of it. Many of the patients will be playing outside too, and staff working in the compound can interact and get to know them, all these different elements adding together to in effect make Acheru greater than the sum of its parts. In the workshop, Matthew assisted Harriet with production of various disability appliances and furniture.
He recently had several spells in hospital with complications arising from septic arthritis, being admitted to Mulago (the main government hospital) for several weeks in June, and following discharge he seemed to be recovering back at Acheru. He then had to be admitted to Mukono Hospital (our local partner) for a short time, but died soon after returning to Acheru. His septic arthritis had caused complications with the heart, liver, and kidneys. He leaves behind his wife and two small children, five year old Owen and three year old Denise.
Acheru is a small unit so all the staff get to know each other very well, with most living on site, and Matthew's loss is keenly felt.

Matayo Katongole - Compound cleaner Feb 2021

Matayo also works at the workshop Feb 2021

Matthew with his children
There has been more progress in our developing partnership with Rapha hospital. The aim is to raise awareness of disability throughout the target area and to reach those children who need help. To do this effectively means involving local community leaders to inform them of the partnership, its objectives, and the expected benefits. A joint meeting has now been held with the Rapha staff, local leaders and government officials, and our team from Acheru. A total of 51 representatives attended for what was referred to as orientation training. The sessions went on all day and Joyce reports that it was amazing to have people tell her that this is the first of its kind. Many people continue to be ignorant about disabilities and how they can be prevented or managed. Those attending asked that the training be extended to other parts of the district.
The Rapha staff are now working on a detailed report and we'll then consider the next step. Based on previous experience that will probably be the organisation of rural outreaches and clinics where people can be instructed in health care and prevention of certain conditions. Children can also be brought for assessment, following up with advice, local outpatient treatment, or referral for treatment at Rapha hospital. Where appropriate, children can also be brought back to Acheru for treatment there or at CoRSU.
It wasn't a surprise to hear that there was so little understanding of disability, this is what we found in other areas, sometimes even relatively close to large population centres and hospitals.
When Joyce and Harriet visited Rapha a few months ago to discuss the possibility of working together they saw two month old Alexa, born with club feet. They were able to bring her back to Acheru for treatment, and you can see her progress in the photos.

Community leaders at Rapha

Community leaders learning about disability at Rapha

Joyce giving instruction at Rapha

The first child brought to Acheru from Rapha

Alexa undergoing treatment with Steenbeek foot abduction braces

Alexa, now 5 months old
Report from Joyce on community work:
'Community work takes place two or three times very week, the CBR team working in collaboration with the medical team. They visit former patients and also assess patients seen for the first time. They go to villages in the following districts: Mukono, Kampala, Kayunga, Wakiso, Buikwe, Jinja, Iganga, Luweero, Mpigi, Gomba, Nakasongola, Soroti, Karangara. In the north, CBR is done in Gulu, Oyam, Apac, and Lira among others.
Harriet and Rose are directly involved. If it is a community outreach, the physio, the orthopaedic officer, the driver and I get involved. Where surgeons request particular patients to be followed, they also get involved. The twin cab pickup is used for this work, four wheel drive is necessary for many of the roads. We still have a problem with Covid restrictions limiting the numbers who attend rural outreaches.
Community work is different from outreach clinics. It involves home visits especially where patients stay further apart. An outreach can be made at churches, medical facilities and other public places. Home visits are conducted two or three days each week with up to 20 homes visited in a day. Health education clinics are also scheduled with the help of community organizers and local leaders.
The team work with local leaders, volunteers from universities, former patients and guardians, village health teams, church leaders. These help to organise outreaches, refer patients and promote the work during local council meetings. The team assures everyone that we treat and God heals, they share prayer with the family. People with conditions which cannot be managed at ACHERU are directed to places which can help them, and they can also be given counselling and guidance. The team finds many people are ignorant about disability, they have different perceptions about the true roots and causes of disabilities and there may be a need to make further visits.
There is great need, many children are out there with no information on where units like ACHERU are located and they have no idea that their deformities can be treated. There is a plan of making more distant follow ups and outreaches.'
What Joyce doesn't mention here is the very demanding conditions the team has to work in. Remote areas, very difficult access on mud roads and tracks, people living in squalor and deprivation. They must then make difficult choices about who can be helped. As the situation for disabled children improves in some areas, we are trying to use our experience and connections to move into 'new' areas where we seem to be needed. We don't only work among the poor. Among the better off we find the same problems of tradition, superstition, witchcraft, and a reluctance to spend money on the treatment of a disabled child believed to have no value.

Kitwe primary school

Rakai outreach

Timothy speaking about CP August 2022

Ronald speaking about Acheru August 2022

Harriet handing over bicycle on a community visit

Timothy speaking about CP
The North:
It's been several years now since we have fully staffed our Minakulu unit outside Gulu. Working closely with the nearby government health centre means that their staff are now fully aware of what can be done at Acheru, so can help to make referrals. What we needed at Minakulu was the minimum of staff necessary to provide follow up care when children returned to the north after treatment at Acheru or surgery at Corsu. This usually meant having a physiotherapist and a nurse. There were problems with the last physiotherapist who left around a year ago, and since then we have 'shared' a physio with the government health centre. Now there is a new Acheru appointment and Okwir Barnabas, after a period at Acheru to familiarise himself with the work, has gone to Minakulu with responsibility for community work, management, and physiotherapy.
This may be temporary as discussions continue with the Ministry of Health's District Health Officer who would like to see us move eastwards to a different area. There's a lot of ground to cover in the north, with limited medical facilities for a very wide area. Now that the link between Acheru and the government services at Minakulu is well established it might make sense to move, the suggestion being that we could help cover part of Karamoja and Soroti - very needy areas. This would mean establishing a base, possibly at Anyike where children can be brought for outpatient treatment or referral, with a full Acheru team visiting several times each year to conduct rural clinics and outreaches over a wide area.
For my part, I would be very happy to see this assuming the costs are manageable as it's our aim to work where we're needed most. The numbers we treat are unlikely to be large, but for those we do the results can be life changing, and there's also the more difficult to quantify aspect of community education aimed at prevention or early intervention. So much that we see, including some of the most challenging conditions, could so easily have been prevented or at least greatly mitigated through early intervention - this means education, both on identifying medical conditions, and an awareness of the interventions available in comparison with potentially dangerous 'local' attitudes and misguided attempts at treatment.
We've had links with some medical organisations in the north which haven't worked out well (some can be inward looking, focused only on their own work and failing to understand how cooperation works) but our present relationship with charities and health services there are working out well, and we want to consider the possibility of a move very carefully.

Atipe outreach in the north

Recent Acheru patients

Setting off for the north with Okwir Barnabas

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