Good news and new challenges in Uganda

In most African countries there is no such thing as a welfare state. Families try hard to give their children a good education, with the hope that they will get well paid jobs and take over the support of the younger children – particularly the payment of school fees. 

Jane is the only girl in her family, the eldest of eight – seven brothers! She did well at secondary school, and with the hopes of her parents invested in her, she achieved a degree in accounting at Makerere, Uganda’s top university.

Jane got a job at a high performing accountancy firm. She was able to pay the school fees for her brothers, and to take good care of her parents. She thought she could now aim higher, and set out to gain a postgraduate diploma.

At this point when Jane’s life appeared to be going very well, she experienced some stress and her mood began to go down. She lost concentration and both her work and her studies suffered.

Then came a dramatic change in mood, which went up to way above normal, too active and overtalkative. When she became irritable and argumentative, that did it: she was immediately fired from her job.

“When someone has physical pain, they can go to the hospital and tell the doctor that I have pain here, but my challenge is that I had pain but it was not physical. I lacked the person to talk to, it was killing me silently” she says.

Bipolar disorder is a serious mental illness common all over the world. You can control the moods to some extent with medication, but talking about the illness and learning how to manage it is one of the crucial treatments. The mental health team at Mukono Hospital, supported by Jamie’s Fund, are great at offering time to talk as well as giving out the right pills.

Jane’s family didn’t seek treatment at first because they didn’t even know that what was happening with her was a mental problem that could be treated. They just looked on and when she was out of control, they locked her inside the house.

 “We saw it as an embarrassment in our family and we didn’t ever want the community to know about it” her mother says.

“It was only when a family friend told us about the initiation of mental health services that we went to Mukono Church of Uganda Hospital.”

Jane and her mother

As Jane eagerly agreed to treatment, so mum readily agreed to become an ambassador for mental health in her community, happily celebrating her daughter’s new life. 

After just two months there was a clear improvement and Jane was happy and well. She was continuing to attend the hospital for her regular treatment sessions, but as with most patients who live some distance from the hospital, it’s likely that the lockdown conditions will have prevented her getting her treatment at times. 

All of the teams supported by Jamie’s Fund face huge challenges in supporting their patients and enabling them to continue with their treatment. Not so many people in rural areas have access to phones – for on-line psychotherapy! – and they normally receive their medication from the team in the clinics at the hospital or village health centre. The results of the virus and especially the very strict lockdown, may be far reaching and far more damaging than anyone will be able to measure. 

Please remember people with mental illness and epilepsy in Uganda, and the teams who care for them with so much love and devotion. 

Lamet Jawotho and Mo Wilkinson

Crossing the line on the 200×100 Challenge

Well!

Thank goodness that Challenge is over (at least I speak for myself).  32 individuals or teams worked really hard during September to cycle 200 miles.  Everyone has completed the challenge and for the most part everyone enjoyed the experience.  I don’t know what the total mileage eventually completed was, but that’s rather less important than the total amount contributed to the work of Jamie’s Fund.  Over £18,000 has so far been donated, every penny of which will go towards the work in Uganda.

Three generations

The Challengers (the cyclists) completed their miles in many different ways.  Some did a few long trips while others tried to do a bit every day.  Some were on the latest racing or touring bikes while some did their miles in the gym or at home.  It really didn’t matter because the important thing was doing the Challenge in order to raise funds.

Many of the Challengers are not people I have met personally or even heard of before the Challenge but, nevertheless, I feel that we have somehow come together in our shared endeavour.  I was tempted to say “shared pain” but that would suggest that others found it as hard as I did which I suspect they didn’t.  For this old codger it was certainly an interesting experience labouring “up hill and down dale”. Actually one of the advantages for those who cycled outdoors (over those on a fixed bike) was that the pain of climbing hills was at least compensated for to some extent by the down-hill sections.  The longest non-pedalling stretch I achieved was about 2.5 miles, slowing only for the photo when going past a speed camera!  That was a glorious experience that made up for the climb to the top.  It will long be remembered.  No doubt each of the others will carry their own memories of the Challenge.

Some Welsh hills

As far as I can tell, everyone who took part enjoyed the experience and for a number of us it has been an opportunity not only to get back on a bicycle but also to continue to ride beyond the Challenge.

But we also remember WHY we did the Challenge which was to help people on the far side of the world who need help with their mental health.  With the support of so many generous donors, also from all over the world, Jamie’s Fund is able to continue the work through the hospitals and health centres who work with us.

And so:

To the cyclists (The Challengers) a huge THANK YOU.

To the donors who have given so generously an even bigger THANK YOU.

To the partners of Jamie’s Fund in Uganda who do work with those who are mentally ill goes the biggest THANK YOU of all.  You are the stars who make the difference to the lives of others.

Hugh Burgess

Chair of Jamie’s Fund

 If you would like to donate to the work we are doing,  please click HERE.

Flash floods at Kisiizi Hospital

Following the flooding at Kisiizi in 2017  and the preventive that was undertaken, we were very sorry to hear that there have again been floods affecting Kisiizi Hospital.  Although the Power House (which is next to the Ahamuza Center which Jamie’s Fund sponsored) and the Children’s Ward were again hit, we are pleased to report that the Ahamuza Centre was unaffected.  This flash flood which overwhelmed the defences put in after the 2017 flood and some of the concrete and stone defences around the powerhouse were washed away.  Not only was the power supply affected but also the water supply, as the pipes bringing clean water to the hospital were bent and broken.

Fortunately no-one was hurt and Kisiizi were quick to get the clean up underway.  This was not a pleasant job as lots of mud was deposited as the waters receded.

In one of the pictures sent by Kisiizi, we can see the flood water stretching out towards the Ahamuza Centre in the background.  You can also see the banda (the round hut with the red roof to the right of the picture) which was paid for last year by Jamie’s Fund as a place for patients to shelter from the sun (or the rain)

 

All hospitals in Uganda are very much challenged by the lockdown for Covid19 and Kisiizi Hospital is no exception so the last thing the hospital needed was the additional costs associated with this flood.  We all wish the team well at Kisiizi as they work to bring everything back into service.

Hugh Burgess

Up and Down – Reflections on a cycle ride!

As a very “part-time” cyclist it has been an interesting experience trying to find time to do the promised miles but when the time has been found it’s also been an interesting time for reflection.

As I have cycled the leafy lanes of North Wales, I have been reminded of the challenge that many mental health patients face in Uganda.  Where I can simply jump in a car and go and see someone (or at least I could if things were “normal”), many people in Uganda simply have to walk.  This is true especially for those going to hospital or to a health centre.

For those seeking help with their mental health, this is a cost not only for them but also for anyone who accompanies them because it takes them away from any sort of economic activity.  When you add in the cost of treatment as well, it becomes an almost impossible burden for many families – and that’s where Jamie’s Fund makes a difference.  By encouraging hospitals to go TO the patient we are able to remove many of the costs for the family and have enabled the changing of many lives.

A well loaded bike

As I labour up the next interminable hill, I think of the people taking their bananas to market to earn a few shillings.  I’ve used a picture  of some of these people on my fundraising page partly because it shows bicycles in Uganda but more because it reminds me that whatever pain I’m going through they have to do this day in and day out.  Cycling is not a leisure activity but an essential means to sustain life.

 

And then, reaching the top of the hill and levelling out for a few hundred yards I fall into a reverie until a loud “PLOP” on the road in front of me wakes me abruptly and my heart pounds.  My initial reaction is that a very large bird has just passed over, but I then realise that it’s a squirrel that has fallen out of a tree – no doubt itself woken by the sound of my laboured breathing!  And then I’m further startled as the squirrel scuttles back up the tree. Again, I’m reminded of the contrast between the UK and Uganda.  Here, in our relatively rich country, we have many small animals, some beautiful birds and even large animals like deer – but it’s nothing compared to Uganda.  While Uganda has little wealth and many people live on the edge, the country itself is rich in wildlife although much is endangered: beautiful birds, amazing butterflies and of course some incredible large animals, elephant, hippo, zebra, lion and my favourite, gorillas.

 

And that only makes me reflect on encounters with some wonderful people I’ve met, ill with mental health issues and often speaking languages I can’t understand.  In contrast to them, I have everything I need (and more), live in relative comfort, have access to health services and supermarkets, have many more than one change of clothes, have cash in my pocket and a car on the drive (as well as a bicycle in the garage). But as we exchange glances and perhaps communicate through one of the nurses, it is another special moment as our common humanity comes through: Yes, we a separated by geography, language and material wealth but we are both human and that makes us very much the same and I’m pleased that everyone who has been involved with Jamie’s Fund over nearly ten years has made a difference to the lives of other people in an often forgotten corner of the world.

 

And at last, home!  Safe! With a few more miles under my belt (what a silly expression!) and after a shower and a sleep ready to do it all over again – or maybe I’ll just take a walk before bed!

Hugh Burgess

STARTING – AND THEN PAUSING – PCO TRAINING

Miria’s Story

Miria is one of three nurses currently being sponsored by Jamie’s Fund to train as a Psychiatric Clinical Officer (PCO). This course is only offered at the Butabika training school, part of the national psychiatric hospital, near Kampala. This is about four hours by bus from her home where her husband has to care for 3 children in her absence. Miria is part way through her first year of the three year course.

In a country with few psychiatrists and clinical psychologists, local mental health services are usually developed and led by PCOs. After training, these Jamie’s Fund PCOs will go back to their hospitals and get working to develop services in their communities!

As has been the case for many in education across the world, Miria feels frustrated that government restrictions to limit the spread of Covid 19 in Uganda have meant that all the universities and training schools have been closed since March this year. Like many other students and trainees, she has been sent home with lecture notes to study and course work to complete. Yet her tutors have been unable to offer any support and guidance. Access to reliable internet is another challenge, made worse by the increased demand on mobile data systems by all those trying to work or study from home. Add to that the familiar situation of trying to meet the needs of the whole family whilst everyone is confined to home. Not easy.

When I spoke to Miria in July, she was still praying to return to her course, but had no word on when that might be possible.

Q: What inspired you to do this training? – It was the mhGAP* course in 2018, it inspired me very much. Although I already tried to help when I saw patients with mental illness, I had no training and did not know what should be done. After mhGAP my colleague Patrick and I really understood a lot more, and we told the hospital management how the staff should pick out and handle these cases! And now we have trained other staff at the hospital in mhGAP.

Q: What have been the challenges? – It is hard to be far from my family. I miss my children. My husband has had to become mummy and daddy. But they all support me, always. My first born prays for me when I am away, ‘Let mummy pass her exams’…And the food is not good, only posho (maize meal with a dough-like consistency) and beans!…I felt lost when I first went there, but I have been getting good results in the tests, and now I am more confident.

Q: What has been good about the training? – There were no surprises, really, I was already used to these patients. I like working with people with depression, especially with risk of suicide, I have the heart for these people. I am proud to have been helping the inpatients, and learning new skills too. I have made new friends among the other students. We mostly help each other, and we relax together.

Q: Anything else? – Only that I feel bad about losing all this time. Studying at home is not the same, you do not have the same motivation, and there is nobody to ask if you do not understand.

Linda Shuttleworth. 6 August 2020.

*mhGAP is a World Health Organisation (WHO) programme to train non-specialist health staff to identify and treat the common presentations of mental ill health. Jamie’s Fund has been supporting the roll out of this training since 2018.

 

Dr Maureen Wilkinson and the three nurses.

Maliba Outreach Clinic and the contribution of Psychiatric Clinical Officers

 

In mid-March, just before the Covid 19 internal travel restrictions were imposed in Uganda, the mental health team from Kagando Hospital went out by motorbike to hold an outreach clinic at Maliba, about 25 miles away. Joseph, the Psychiatric Clinical Officer (PCO) led the clinic, Rachel, one of the regular MH nurses was helping, and Bisiah, a newly qualified PCO, volunteered to gain experience.

 

Between them, they saw and treated over 70 local people with epilepsy and psychosis. Some 55 of these were expected returnees, and the rest, although less reliable attenders, were mostly somewhat familiar to the staff. As mental healthcare services based at hospitals such as Kagando, Bwindi and Kisiizi have established themselves and grown over time, one of the important things they do, is to maintain vulnerable people on treatment, keeping them well and productive in their communities.

Psychiatric Clinical Officers are usually the leaders of mental health services in Uganda. They work at a level between experienced nurses and junior doctors, having undergone a three-year training in the management of mental illness. Jamie’s Fund is sponsoring the training of more PCOs, to enable hospitals without staff trained in psychiatry to develop one of their own staff as a mental health service leader and so develop mental health services at their hospital. This is a real partnership, as Jamie’s Fund meets the fees and other immediate costs of the training, while the hospital continues to pay the trainee’s salary, and bonds that person to return to work there for a period of time after qualification.

We have 3 individuals training currently at the PCO School at Butabika in Kampala. Many more are needed as most hospitals don’t have a PCO. The current cost met by Jamie’s Fund is about £1,300 per person each year. Could you, your organisation, your family, or a group of friends sponsor one person for one year’s training, or see them through to qualification as a PCO over the three years? Please get in touch if you would like to discuss this further.

Linda Shuttleworth

Health Care Challenges

As much of the world has been engaged in coping with the Covid 19 pandemic, we have been keeping in touch with our partner hospitals in Uganda. We were keen to understand the challenges they have been facing, and how they have been responding. Towards the end of May, we contacted all our active partners, and soon had replies from nearly half of them.

Empty waiting rooms

 

 

All hospitals have faced reduced income, because their training schools have been closed, and fewer patients are coming for treatment. In some cases, numbers attending are 25% of what they were. The barriers for patients are lack of money and lack of transport as public transport had been banned for some time, only now beginning to be allowed again, with increased spacing.

The hospitals have the frustration of seeing drugs in their pharmacy being wasted as they go past their expiry dates.

 

 

 

Mental ill health is on the increase, not only because people are unable to access treatment. Poverty and isolation can tip vulnerable people into mental ill health, as anxiety, depression, and suspicious beliefs run unchecked. And hospitals are noticing an increase in domestic and gender-based violence, drug and alcohol misuse, and teenage pregnancies.

Fewer patients

 

General health is suffering too, as people are less able to access child immunisation programmes and regular HIV clinics or access emergency treatment. As people delay seeking treatment in the early stages of illness, they are more often becoming severely ill and less likely to recover.  The number of deaths from Covid has thankfully been low, but many people have suffered in other ways due to the virus and wider impact of the lockdown both on health and on the economy.

 

 

 

Despite having a fraction of the resources available to us, hospitals have done their best to respond to the crisis. They have provided transport and temporary accommodation for their staff to enable them to be at work. The mental health teams have reached out to their communities with phone calls and radio broadcasts, encouraging people to come in for treatment. They have set up informal helplines. They have gone out to bring people in who were at risk of becoming mentally unwell. And they have done their best to keep everyone safe, with social distance and available PPE.

Uganda has its Healthcare Heroes too!

 

Linda Shuttleworth

Covid 19 “Lockdown” affects many aspects of life.

A village road (prior to lock down)

“Esther”, one of the three women we are sponsoring to train as a psychiatric clinical officer sent a message telling us how things aren’t working for her in Uganda.

They were sent home from the training school in Kampala when all institutions were closed by the Government. They were told that when they came back they will have to sit exams on what they would have been taught, had they been in school. They have been given the teaching notes on their computers, so they are expected to work from those.

She lives at home with her parents, some miles from the hospital. She hoped to be able to work in the hospital once she was home, but because of the ban on public transport she can’t get there. Not even the ubiquitous boda bodas, the motorbike taxis, are allowed to move.

Consequently, Esther is working with her parents on their small farm during the day, so they have some food to eat, and she studies as best she can in the evenings.

Many people in Uganda only earn enough to live on for a day or two at a time. This lockdown is causing severe problems, especially for the poorest who have no reserves.

It is possible that the lockdown will be lifted on 5th May.

Ewan Wilkinson

A life changing story of an 8-year-old is worth sharing.

Our friend and colleague Lamet is a clinical officer in the Church of Uganda Hospital in Mukono, a township a few miles outside Kampala. He thought this story worth sharing: we think he’s right!

Here is his account.

Suleiman, just 8 years old, lived with a disabling illness for 6 years until Mukono Church of Uganda Hospital (MCOUH) with Jamie’s Fund offered him a new life. His mother lights up with much joy as she looks back and the realisation of how her son’s life has been changed for the best.

Their story

Teopista and Henry, Suleiman’s parents, are peasant farmers in a rural remote area of Uganda. They could barely afford any resources to save the life of their child.

They were blindfolded by their traditional beliefs into accepting that Suleiman’s situation was permanent, not knowing that this was an illness that could be treated.

“Suleiman has been a survivor and strong fighter. I have had nine children, five of whom have passed on, leaving me with four”, his mother says.

Teopista goes on to say in agony that her son had been born at home instead of in hospital because the closest health facility was 75km away.

At the tender age of two, Suleiman started experiencing a lot of painful attacks characterised by loss of consciousness and stiffness of the body. The attacks became more frequent every now and then and began to endanger Suleiman’s life.

Teopista, Suleiman’s mother giving history about the son’s illness

This illness is known as “Ensimbu” by local people, and associated with evil spirits. Suleiman’s parents first ignored it until he turned three years.

Teopista says, “The village elders advised us that the only way we could get our son healed was to please the ancestors through making sacrifices because this illness was a sign that they are unhappy about us.”

This condition was assumed to be a curse on their family and so they continued seeking ancestral guidance and healing through sacrifices for the following 4 years. But there was no improvement but rather increased severity of the attacks.

” My son was increasingly deteriorating both mentally and physically, thus I gave up”

At the age of 8, even though Suleiman’s condition had not resolved, his mother tried to enrol him into a nearby private school so that he could at least learn how to write his name and to read a few little things.

However, this became expensive, and most of Teopista’s income was coming just from her small garden. There was no help from her husband whose only work then was drinking alcohol from morning to sunset.

While at school, Suleiman’s major challenge was stigma from both the teachers and his fellow learners. They kept on laughing and calling him unpleasant names like “possession child”. They would not associate with him because they thought that his illness could spread to them.

After just a month, Suleiman had a terrible attack while at school that almost cost his life. He spent about 4 hours unconscious. “The next day, he refused to go back to school mainly because of the insults and humiliation” mother said.

The turning point

“It was a Sunday around 9:30 am. A team from MCOUH visited our church to health educate us about mental health services at the hospital.” Teopista reports.
She added “I seldom went with my son to church due to fear of embarrassment, but that day I was the happiest person to receive such information, I was so humbled and will never forget that day in my life”

Teopista says that day the light of hope dawned in her family.

At the hospital

Lamet takes up the story: “It was a Friday morning; I saw a worried, humble woman holding a very weak child in her hands. The child had a big scar on the right leg. I found out later on that he had at one time fallen into the fire in their home.”

On thorough assessment, Suleiman had long been battling with epilepsy. Unfortunately, in the middle of the interview he went into ‘status epilepticus’, and the fits kept coming continuously. He was reported to have had multiple attacks over the previous days.”

I admitted Suleiman, and as we managed the seizures, so he stabilized.”

 “Whenever I reviewed this child on the ward, the mother would say “The rest of my hope lies here” and this statement made me reflect and think more deeply of how much this family had suffered with this illness.

Three days later, Suleiman was discharged home after being initiated on treatment and a review date was set. Mother left the hospital very happy.

 

On the second visit

Teopista never gave up fighting for her son’s life and not at any time did she think of doubting the team that was working on her son.

Suleiman had had just one single attack in a month while on treatment. This was amazing to both mother and son.

“My son’s dream of continuing with education has been reborn ” she said. Suleiman could not stop telling his mother of how he wants to become a doctor.

 

The new changed life of Suleiman is worth celebrating

Suleiman is attending the mental health clinic at MCOUH every first Friday of the new month. He has shown great improvement on treatment and is cooperating very well with taking the medication.

He has been re-enrolled back to school and has started his first year in a nearby school. The family is so grateful for the services supported by Jamie’s fund at MCOUH.

Every single day, we get children like Suleiman who have long been battling silently with their own lives to fit into society, especially because of the stigma associated with the illness they bear.

Thanks to Jamie’s Fund

You will probably know those friends who are perpetually there for you any time you need them. They easily sense when you need them and immediately engulf around you and turn your worst nightmares into big smiles.

It is the reason we shall continue to be most grateful to our partners – Jamie’s Fund – for supporting the mental health of our dearest communities.

Lamet Jawotho
Clinical Officer
Mukono Church of Uganda Hospital

If you would like to contribute to the work Jamie’s Fund is doing in Uganda, please click on the Donate button above.

Covid 19 Training for Ugandan colleagues

On Good Friday, Dr Nick Bass and Edmund Koboah, from the East London NHS Trust, facilitated an online presentation and Q&A session around Covid 19, for staff from some of the health facilities we work with in Uganda.

 

 

We had invited seven of the hospitals we know to participate, but some had difficulties with getting good enough access to the internet to take part. In the event, seven staff from two hospitals “zoomed” in.

Ugandan staff learning to use PPE (from A.M.R.E.F.)

 

 

They told us that they have access to some PPE, and that they have not yet had Covid training from the Ugandan Ministry of Health, so this was timely and helpful. They had questions about managing the safety of their families and communities while looking after patients with Covid.

 

 

 

We were able to forward the presentation to all seven hospitals, together with some useful documents. Nick recorded the session, and we hope to find a way to send that too. Good teamwork!

We are grateful for the generosity of East London NHS Trust who offered to share their Covid 19 training which they adapted for the Ugandan mental health staff. The training was about the safe assessment and management of mental health service patients who have or may have the coronavirus.

Linda Shuttleworth