Why is epilepsy a problem we are involved with?

Joseph outside a rural health centre.

Mental health clinics in Uganda invariably include many adults and children with epilepsy. Part of the reason for this is the lack of neurology specialists in Uganda, and little capacity within general medicine, so these patients are usually seen by mental health services.

However, it is apparent too that epilepsy just seems to be more common in Uganda than we are used to in the UK. This higher incidence of epilepsy is confirmed by several studies. In fact, epilepsy is 2 to 3 times more prevalent in Sub-Saharan Africa than in industrialised countries. This may be due to factors such as higher rates of birth defects, minor brain injuries, parasitic infections and road traffic accidents. 

Children in the village waving.

In low income countries generally, the prevalence of epilepsy is higher in rural areas than urban ones. This might be due to having less easy access to maternal and obstetric health care, as well as for head injuries, in the remote rural areas. There is also the suspicion that town relatives with epilepsy might be sent back to the village. 

A 2018 study in south west Uganda found a particularly high prevalence (20.4 in 1000) in children. This reduced with age, especially over the age of 5 years. So do some children naturally ‘grow out of it’ or are there other explanations? We don’t really know.

Just as with mental illness, in Uganda epilepsy is assumed to be due to demon possession or witchcraft. And as with mental illness, stigma is high, and it is a cause of fear and shame if your child has seizures. Many families have no idea that treatment is available and effective.

Many children with epilepsy suffer burns as they fall into the fire during a fit, as cooking is usually done on an open fire. Stigma, injuries and burns, and the reaction of others, make the life of a person with epilepsy a very difficult one.  They may be excluded from school or employment.

Whatever the causes are believed to be, mental health staff have a critical role to play. Not only in offering medication as appropriate, but importantly in helping the parents and carers of those with epilepsy to understand it better, and to know how to keep their child or relative safe.

As the mental health teams work with such families, they can sometimes make a dramatic difference. In one family, the eight year old son had frequent fits, and it was judged that the father was the agent who was bringing in the demons who were the cause. Not only was the child excluded from school, but the father was sent away from the village. With treatment, the boy’s fits ceased and he was allowed to return to school. The team from Bwindi Community Church of Uganda Hospital helped the family and local people to see an alternative explanation, and the father was restored to his place in the home and in the community.

Linda Shuttleworth

Children waiting to collect water.

Looking after those in need.

From time-to-time we are reminded that Covid19 is not the only story in town and even more importantly that there are good news stories that have nothing to do with Corona virus.  A recent story from Georgious Orishaba, the psychiatric clinical officer at Kisiizi Hospital is a case in point.

In September, 2019 a lady was picked up from the side of the road by a passing well-wisher and brought to Kisiizi Hospital.  Here we call her Mary (not her real name).  Mary was 34 years old and suffering from a mental illness that meant that she was unable to tell the staff very little about herself, her family or where she came from.  What little she did know kept changing.

Later Mary remembered that she had worked a time for a member of staff from Kisiizi Hospital and so a little information about Mary became known.  She was also diagnosed with a range of issues including depression and psychosis associated with HIV as well as a number of other conditions. 

Over time and with treatment it became clear that Mary had been abused as a child from an early age and had not only lost one child but had also had two others.  As a result of this she had been blamed by both her parents and her employer and so it was she was eventually found at the side of the road.

Although Kisiizi is a not-for-profit hospitals, patients are normally expected to contribute towards their medical costs and to provide their own food.  For Mary this was a non-starter since she had no resources to meet any of the costs.  However, Kisiizi Hospital stepped in and supported Mary from September, 2019 until her eventual discharge in July, 2020.  After 10 months of treatment members of her family were finally found.  Unfortunately both her parents had died but we are pleased to report that Mary has finally become settled with her aunt.

At Jamie’s Fund, we are always delighted to hear stories about patients who have come through challenging times and are very pleased that, through the Jamie’s Fund investment in the Ahamuza Centre, Kisiizi is able to provide a certain amount of long-term care of this kind.  We are also aware, however, that the cost to the hospital of providing both medical and nutritional care is significant.  

There are many stories like this and Jamie’s Fund is pleased to support work with patients like Mary.  If you would like to contribute towards the work with people with mental health in Uganda, please click here.

Hugh Burgess.

Kilembe Mines Hospital; a Story of Resilience

Maureen and Simon with Sister Teopista, Amon, and Joseph Wakabi.

It seems like another world, but just over a year ago, as part of our last visit to Uganda, Maureen Wilkinson and Simon Tavernor visited a hospital in the foothills of the Rwenzori Mountains.  Kilembe Mines Hospital was keen to develop mental health care, recognising this as a largely unmet need locally. It was agreed that Jamie’s Fund would do what it could to support this. 

The Hospital was established back in 1951 to serve the staff of the Kilembe Mining Company and the local community. (Copper and Cobalt are the minerals extracted and processed here) It is now a joint venture between the Company, the Government of Uganda and Uganda Catholic Medical Bureau. It sits in the flood-prone Nyamwamba River valley, over 50 miles away from the nearest Regional Referral Hospital at Fort Portal.

in May, we heard that the hospital had been destroyed by a torrent of water, mud and boulders, washed down when the river higher in the mountains had burst its banks after unusually heavy rains. Buildings, medical stores and equipment had been washed away, as had the homes of staff and villagers. People were evacuated to temporary shelters.

We heard no more for a long time, and assumed that sadly that was the end of this hospital. However, just as we were commissioning the next mhGAP Train the Trainer workshop (to be run at Butabika before the end of the year) there was news. Kilembe Hospital had temporarily relocated to buildings in the nearest town, Kasese, and was up and running again!! Not only that, but they were eager to send two of their staff to attend the training and begin the process of expanding their mental health care service. 

We stand in awe of their spirit and resilience. 

Dr Diana Atwine and colleagues visiting the damaged hospital

Dr Diana Atwine, Permanent Secretary at the Ministry of Health, visited the site in October , and committed that the hospital would be rebuilt in a safer location.

Linda Shuttleworth

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