WHO WOULD HAVE THOUGHT IT!

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A group of six trustees and volunteer clinicians visited Uganda in February, the first time this has been possible since September 2019. It was a trip full of challenges and surprises, but it was a joy to see old friends and colleagues again, and be able to share news first hand. Some of the hospitals we support have really struggled during the pandemic, due to the impact of hard extended lockdowns, as well as that of sickness and bereavement. Others have, well, surprised us!

At Uganda Martyrs Hospital in Ibanda, over towards the west of the country, the response to our first visit was to take up the opportunity to send two staff to become mhGAP trainers. These two then rolled out the training to 25 general trained health staff, who have brought their mental health skills to wards, outpatients departments, and local Health Centres. They now offer regular mental health care in the hospital. 

But what came out of the mhGAP training that we hadn’t expected, was a peer-supported residential mental health centre!  Senior Nursing Officer Sister Flora and Certificate Mental Health Nurse Innocent hired a building nearby and set up a centre for people recovering from mental ill health! Led by Innocent and Flora, various mhGAP trained members of the hospital staff voluntarily work in support, and the Bishop has assigned one of the priests to act as patron and chaplain. They have recently successfully registered the ‘Tumuka Mental Health Epicentre’ as an NGO. When we called, there were twelve people resident, all pleased to be able to talk to us about their difficulties, and the ways in which they contribute to their community. 

For example, C. looks after Reception; he had been head of a secondary school before psychosis got the better of him. His parents believed this was caused by witchcraft, a spiritual attack, and took him to shrines and healers. He was hurt by his treatment, and seemed to fare little better at Butabika, the national government psychiatric hospital. Now he is improving, hopeful, life is better, and he wants to make up for lost years. B. runs weekly AA meetings at the centre, drawing on his own experience of recovering from alcoholism. Other residents have epilepsy, dementia, depression, stories of loss, mistreatment and disadvantage. Their testimonies give powerful witness to the possibility of recovering to become useful and valued members of society. 

There are regular talks and activities for centre residents, who contribute what they can, but it is a hand to mouth existence. There is a flat screen TV, but not quite enough beds at the moment! Local people help with food and firewood; a supportive local leader lives close by and keeps an eye out for them. One of the nurses has opened a small pharmacy on the premises; sales of common medicines to people living nearby generate a little income. 

The energy, enthusiasm and self-belief in this place is palpable. Innocent’s parting message was ‘People should not fear to start!’ Even if the task seems impossibly big, it is better to start something, somehow…

Linda Shuttleworth, 12 March 2022.

World Mental Health Day at Lubaga Hospital, Kampala.

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Lubaga Hospital in Kampala is a large busy hospital.  They are working hard to develop a mental health service.  They have had a visiting psychiatrist for some years, but they have become aware that there is a wider need for mental health care which they are not yet meeting.

 The hospital has already run two mhGAP courses training 46 members of staff.  As a result of the training a mental health team has been established in the hospital which meets regularly to discuss how to improve support in the different hospital departments.  They have also set a programme of quarterly continuing medical education session on mental health topics. Recently the hospital appointed two certificate mental health nurses, which is likely to speed up the integration of mental health care into all their services. They are also sending a member of staff this year to train at Butabika as a psychiatric clinical officer.

World Mental Health Day in October is dedicated to promoting the understanding of mental health education, awareness and advocacy across the world.  Sister Lilian Nakayiza and colleagues thought marking this day would be a good opportunity to raise the awareness of mental ill-health in the hospital and for staff to talk about the work they were involved in.

The week before the main event a series of mental health education talks were held in different departments for patients and their visiting relatives. Over 300 people heard the talks about the common mental illnesses, including epilepsy and alcohol and substance abuse.

A group from the mental health team went out to a suburb of Kampala to hold a meeting in the community about mental ill health.  25 people came, including 5 village health volunteers.  These volunteers can have an important role in sharing information in their communities.  

On the 14th of October a celebration for World Mental Health Day was held in the hospital with the theme “Mental Health for all, leaving no one behind”.  The aim was to raise awareness of mental ill health and also to mark one year of working with Jamie’s Fund.  Just imagine all those members of the mental health team wearing their new team T shirts, now their uniform, which illustrate the partnership between the hospital and Jamie’s Fund. 

 Dr Hafsa, the lead for mental health in the Ministry of Health addressed the group and others spoke of the work that was being done and some of the plans for the coming year.  Ewan and Maureen Wilkinson were delighted to attend by Zoom! A cake was cut and refreshments served in a gathering decorated with cheerful balloons.

The clinic attendance figures for the past 12 months were reviewed.  Over 800 patients were seen who were diagnosed with mental illness.  Over half of these were diagnosed with anxiety, some of which were related to problems due to the Covid situation.

One of the presentations ended with the message:

Let’s speak; let’s act; and let’s walk the talk!

Ewan Wilkinson, and Sister Lilian Nakayiza, DPNO Clinical Operations 

The boy in the drain.

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For many charities, the pandemic has brought huge challenges. We at Jamie’s Fund are so grateful that the way we work means that training and service development in Uganda continues to make progress even though we have not been able to visit. And happily, we are hearing of wonderful results in some of the church hospitals

One medical director told us that since the training which JF supported, his ward rounds have changed significantly. “Now I hear all about the patient’s mental health as well as their physical symptoms. And so we can treat them properly.” 

We are thrilled that the training is really making a difference. Ewan and I were at a recent celebration of World Mental Health Day at one of our Kampala partners, Lubaga Hospital. There were lots of balloons! We were on Zoom, of course. But we were glad to see Joshua, our chief mhGAP trainer for Jamie’s Fund in the church hospitals. He was able to be present in person at the celebration, and we heard his lovely speech praising the team for doing so well with their training, remembering it, and best of all, really putting it into practice and changing patients’ lives for the better. 

Kisiizi Hospital, way down in the south west of Uganda, was our first partner when we started JF. We recently received a moving story of how the mental health team there puts the hospital’s witness to “care for the vulnerable” into action. In much of Africa, people with epilepsy are cared for (if at all) by mental health services.

Justus, found in a drain.

It was early December. Fourteen year-old Justus (not his real name) was found by the police in a drainage ditch in the rain. He kept having epileptic fits and no one knew who he was.  

The police brought him to Kisiizi Hospital, where the mental health team cared for him in every way possible – he was very weak, unable to sit up or feed himself at first. He needed medication for his seizures. And the team needed to find his family. 

Many people with epilepsy throughout Africa don’t get the medical treatment they need. Usually the seizures are believed to be due to evil spirits or witchcraft, so the person is taken to the traditional healer or a religious healer who will try performing exorcism, often for hours at a time. If they do find their way to a modern hospital, supplies of the right medication may not even be available. 

Justus was lovingly cared for by Orishaba Georgious, the Psychiatric Clinical Officer, and the team at Kisiizi. He responded well to medication, and began to eat and gain strength. 

But how to reunite him with his family? I’ve been surprised and impressed at how this works in rural African communities. If the person themselves has no information or is unable to give any details, you begin by asking in the neighbourhood of where they were found. Then networks of neighbours, local councils, village workers, parish members and council leaders are all brought into action. 

Some of the information thus gained may be a bit doubtful – for example that “there used to be a boy with seizures in the village on that hill over there”. But steadily and patiently the team made the connections for Justus. On 25th February, finally, they found his family. 

One of the many effects of the pandemic has been transport – not just for patients, but also for the medicines needed to treat them. Getting supplies of medication for patients with epilepsy has been a real challenge for many of the hospitals we support.

Kisiizi’s mission is to ensure that their patients can return to “Life in all its fullness”.

For one vulnerable teenager, now back at home with his family and still under the care of the mental health team, that vision can begin to be fulfilled.

Maureen Wilkinson

with Orishaba Georgious 

Getting the message out

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Our latest programme in Jamie’s Fund is called Community Leaders’ Sensitisation.  This is bringing those who are seen as leaders together in a group of about 30 for a day to raise their awareness of the signs and symptoms of mental ill-health and epilepsy.  

We developed the material to be used based on World Health Organisation programmes. Bwindi Community Hospital were one of the first places to pilot it for us.

Kuule Yusuf, the leader of the mental health service, set up two days and invited about 60 local leaders to attend.  Many of these were church leaders, with some policemen as well.  The two traditional healers who were invited didn’t attend, which is a pity.

There were a lot of discussions as people heard about how mental illness can manifest itself. The church leaders responded saying ‘but we get people coming to see us with these problems and we don’t know how to help them”.  The police similarly realised that some of the disturbed people who come to their attention also had some of these symptoms, and that perhaps the hospital would be able to help more effectively.

One of the church leaders asked: what is the difference between a “spiritual” illness and a “mental” illness?   A good question.  Kuule asked them what were the signs of the two kinds of illness and made a list of each.  It became apparent that the signs were very much the same, and they all agreed that help from the hospital could be appropriate.

Both sessions were felt to be helpful by everyone. Since then the local police have referred two people with possible mental illness and there has been a steady stream sent by the church leaders, including one person who has been disturbed for about 6 years and now has started on treatment.  

Kuule says they were very helpful but the number of people they were able to train is small compared to the size of the district.

We have now contacted all the hospitals we work with, inviting them to hold these sensitisation days. We need to ensure that the message is taken out into the communities.

It only costs about £20 for a local leader to attend one of these sessions.  If you would like to support this work please click here. 

Ewan Wilkinson and Kuule Yusuf

Developing mental health care at Lubaga Hospital in Kampala.

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Lubaga hospital is one of the largest private-not-for-profit hospitals in Kampala. It is a busy general hospital in the centre of Uganda’s capital city. Lubaga also have outreach clinics in some of the poorer parts of the city.

They are working toward becoming a regional referral hospital and so they are looking to increase the specialities in the hospital. This will include psychiatry.

Some of us from Jamie’s Fund visited the hospital in November 2019. We were given a wonderfully warm welcome by the senior staff, who were all there to meet us, together with an array of refreshments. We were impressed by the thoughtful and compassionate leadership of the hospital. They really wanted to develop an effective mental health service, but were uncertain how to go about it. How good it is for Jamie’s Fund to be partnered with such an enthusiastic group. 

Following our visit, the management team were keen to run an mhGAP workshop, which we were pleased to fund. Two of the senior staff attended the “training the trainers” workshop run by our colleague, Joshua Ssebunnya.   Their hospital workshop was very well organised by deputy Principal Nursing Officer Lilian Nakayiza, and they trained 30 general staff from the hospital. 

As part of the follow up, they set up a group in the hospital which meets monthly to discuss how mental health care is progressing.  An outcome from one of their meetings was the realisation that there were still many staff in the hospital who were not really aware of mental illness.  They asked If we could please fund another mhGAP workshop, so that more staff could be trained.  We were happy to support this training as well, and they trained another 30 members of staff.

Jamie’s Fund has been aware for some time that there is a need to do more to sensitise the leaders in the local communities about mental illness and epilepsy.  This is so that they become aware that these illnesses are not infectious or due to demon possession, and – importantly – that they can be treated.  Working with our colleagues in Uganda we have developed a one-day course for leaders in the community such as local government leaders, religious leaders, teachers, and health volunteers.

The staff at Lubaga Hospital were keen to pilot this new training.  They asked if they could run three courses, as they had identified 90 people who were in leaders in the surrounding communities.  The courses ran well and there was much discussion about different aspects of mental illness and how it affects people they know.  Inevitably there wasn’t enough time to cover all the different aspects of mental ill health and epilepsy, but the participants greatly appreciated the information and the opportunity to discuss the issues.

As a result of these workshops, staff from the hospital have been requested to talk to other groups about mental ill health and its treatment.

We very much appreciate the interest and support of the hospital management team in developing mental health care.  This support is such a key element of service development, and makes it much more likely that the new services will succeed and grow. Excitingly, there are plans to send one of the staff to train as a psychiatric clinical officer, which will increase the skills and capacity for good mental health care in the hospital.

Lilian Nakayiza and Ewan Wilkinson

More Than 700 people trained in mhGAP, with your support.

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Setting The Scene

Have you ever watched “Our Yorkshire Farm” on BBC TV?  Ravenseat is a remote farm at the top of Swaledale in the Yorkshire Dales, 30 miles or so from the nearest hospital where farmers Owen and Amanda have brought up their nine children.  Although remote, the family have the vehicles to get to the nearest shop or even to the hospital if necessary, except perhaps in the depths of winter. Even so, I am often left wondering what would it be like to be stranded in such a place without transport or access to highly qualified medical care?  What would it be like if most of the country was in this situation?

This is the challenge for much of rural Uganda, where patients with all kinds of medical needs not only do not have transport but are often a considerable distance from the nearest hospital. They also lack the money either to get there or to pay for treatment if they able to reach the specialists.   

For people with mental illness or epilepsy, this is an even greater challenge. With a shortage of staff with specialist mental health knowledge, patients may struggle even to get an initial diagnosis.  Even once they have a diagnosis, they will then need to access and pay for medication on a regular basis. For many individuals and their families this is almost impossible. 

What are we doing about this?

Jamie’s Fund is tackling this problem head on! By equipping non-mental health clinicians (nurses, clinical officers and doctors) with the skills to diagnose  and treat the more common mental illnesses, they are able to help those in their communities with a mental ill health in a new way.  This may allow issues to be addressed at an early stage, before they become major problems.

The training we provide is known as mhGAP* which is a course developed by the World Health Organisation (WHO), for use in low and middle income countries. Its aim is to increase the number of clinical staff who can diagnose and treat mental ill health.  

Each mhGAP Course is run at one of our partner hospitals by a small team drawn from local mental health professionals who are mainly nurses.  The team uses a mixture of teaching methods to help each trainee to recognise keys aspects of mental ill health and to follow a systematic approach to find appropriate treatments.

A Great Achievement

So far Jamie’s Fund has paid for the training of more than seven hundred people in mhGAP across about half of Uganda.  We have funded 25 courses, with each course having between 20 and 40 trainees.  This is a huge number and, where this training has been done, the impact has been significant.

Following a recent course at Nkozi Hospital, the Medical Director and CEO, Dr Criscent Tumahaise said this: “I am glad to note that there has been a sharp rise in the ‘keenness’ to identify mental health issues/needs amongst staff; and from records, I see the mental health unit getting a little busier. Today, as I performed the rounds, I was impressed by the way the nurses and the clinicians were assessing all patients for overt, subtle, or potential mental health issues, and identifying mental health needs per patient. This was really impressive and it is definitely due to the recent training. I thank you for your support.”

This story from Nkozi is far from unique, and we have seen the impact across the many hospitals where mental health issues are being recognised more quickly and dealt with more systematically and appropriately.

Training the trainers

A training course

Of course, training does not just happen: In order to train people in the hospitals, health centres and village health workers, we needed well-trained trainers.  It was also clear to us from the beginning that Ugandans should be trained by other Ugandans and so very early on in the programme we set about training some trainers.  This was done at the Ugandan national psychiatric hospital, Butabika and was organised by Joshua Ssebunnya, a good friend of Jamie’s Fund.  Three of these courses have been run and we have trained 56 psychiatric nurses  and psychiatric clinical officers from across the country to run mhGAP courses.  These nurses and PCO’s then support one another in delivering mhGAP across the various hospitals.

What next?

mhGAP now has some momentum in Uganda and hospitals are coming back to us asking for additional courses for their people.  

There is also an increasing need to introduce the wider community to some understanding of mental health.  In response, Jamie’s Fund has developed a one-day “Community Leaders Sensitisation” course to give a basic introduction to what mental illness is and to show that it can be treated.   Many people fear that mental illness is infectious and/or may be due to the ancestors or other causes.  Community Leaders Sensitisation courses are  currently being rolled out in a number of locations.  The plan is to roll the course out more widely towards the end of 2021 at hospitals where we already have a relationship.  

Why spend money on training?

A few pounds spent on the healthcare of a single patient can change that person’s life.  The same few pounds on training someone in the basics of mental health care can change many, many lives.  This is part of the philosophy of Jamie’s Fund and why we are so passionate about training.  

The more people who receive training in mental health care, the greater the impact on the medical community and the wider population.

What can you do?

Run over five days, each mhGAP course can cost between £3000 and £5000 and a Community Leaders Sensitisation course is around £20 per person trained.  Would you be willing to donate towards this work?  Even a few pounds can make a big difference to a lot of lives. 

If you would like to make a donation, please click on this link.

Thank you

Hugh Burgess

*Mental Health Gap Action Programme. 

The Challenges of Covid-19

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Whilst things have been tough here in the UK over the last 16 months, spare a thought for our friends in Uganda.

A rural road – but no-one on it!

Recent news paints a difficult picture.  Uganda is in a renewed lockdown for the whole of July at least, and Covid cases and deaths have been increasing. Many people are struggling economically because so many activities have had to close temporarily.  For poorer families this can lead to a shortage even of basic foods.

One medical director told us succinctly, “The hospital ran out of beds, oxygen, human resource, drugs, and our ambulance services were highly on demand.”

There are many medical challenges:  few people have received Covid vaccinations due to lack of supply, the oxygen supply is struggling to keep up with the demand.  There are shortages of other medication as the supply chain struggles to procure and deliver drugs and protective equipment.  Shortages include psychiatric drugs which can have a significant impact on those with mental illness. Many staff have been absent due to Covid which increases the pressures on those who remain.

Staff coping with the limitations from Covid

For hospitals, and particularly those in the not-for-profit sector served by Jamie’s Fund, there are additional challenges.  Hospital income, for example, has dropped significantly because people are putting off going to hospital, just as they did in the UK.  At the same time people are not being treated for potentially serious illnesses.  There are reports, too, of an increase in mental ill health which, again, has been seen in the UK, too.

For those with children, the challenges of home-schooling are considerable.  Although some families receive school work on-line, many families do not have access to the necessary (expensive) technology. Other schools have no equipment or skills to enable them to move on-line.

At Jamie’s Fund we are supporting where we can.  We continue to sponsor the seven Psychiatric Clinical Officers (PCO’s) that we have in training.  They have had a particularly difficult time, with their studies interrupted and other financial challenges.  

We are also considering what else we might be able to do but there is no doubt that there continues to be a huge need for mental health care in Uganda.  If you can help with a donation, of whatever size, please click here to donate.  

Taking services to those in the community

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Bwindi Community Hospital has been providing care for people with mental illness since 2012.  We were invited to visit in 2013 and JF has been working with them since then.   One of the things that has impressed us about the hospital is that it’s vision extends to the community “A healthy and productive community free from preventable disease and with excellent health services accessible to all.” 

At Bwindi, they don’t just care for those who come to the hospital, as it is in some hospitals, but they are reaching out into the community to seek to enable everyone to be healthy and productive. This is a true public health approach.

The population around Bwindi are mainly poor subsistence farmers. Some are able to sell tea to the local factories, and the tourists coming to see the gorillas in the forest bring in some money. But in general, there is little cash in the local economy. People live on what they grow or sell in the market. Raising enough money for school or hospital fees is almost always a challenge. 

The mental health team, under the leadership of Kuule Yusuf, have been working out how to take mental health care to people who can’t get to hospital, for whatever reason.  Public transport is limited by the bad roads and the fact the hospital is literally at the end of the road, so there is no through traffic. There is little money available to pay for transport to clinic or hospital. 

There are 17 parishes for the population of around 70,000 and these were used as the basis of the new service.  Initially a monthly clinic was set up in each parish.  This was enabled by funding from Jamie’s Fund which provided a motor bike and protective gear, and also paid for extra staff.  This has meant staff spent quite a bit of time in community, staying out in two peripheral centres, when it was too far to travel back home each night, particularly when the roads are very muddy.  The result of the increased work in the community, the number of people attending clinics at least twice has increased from 288 to 693 per year

However, this model of care was dependent on staff from the hospital going out.  Kuule wanted the care to be available all the time, not just when staff were visiting.  Kuule asked JF to fund an mhGAP rollout workshop.  He trained staff from each of the health centres in the basics of diagnosis and treatment of mental illnesses.  

Waiting for the clinic

Kuule is completing an evaluation of the service, which we expect will be published.  This shows that the numbers attending clinics at least twice for mental illness have increased again to 839, since the training of the staff in the health centres.  This is very encouraging.

It has also show two issues which they are now working to address.  One is that only a few of the health centres are doing most of the work in mental health.  Some of staff who were trained have been moved to new postings, which means their expertise is lost to that community, others have not really engaged – sometime due to a lack of the appropriate medication.  The second issue is that about 40% of people attending a mental health clinic only attend once.  This needs further review to understand why this is and if it is appropriate.

Those in mental health leadership in the Ministry of Health in Kampala are very interested in this model of getting mental health care out into the community, as it could be replicated in other areas at relatively low cost.  

All credit to Kuule and his team for the services they are providing.

Jamie’s July Lifestyle Challenge.

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Jamie

July 2021 is significant because it sees the 10th anniversary since our beautiful Jamie died.

In those 10 years we have continued to be inspired by his lovely, adventurous, playful nature. It is fitting therefore that we mark this poignant milestone with a fun lifestyle challenge that everyone can join, doing as much or as little as you wish or are able.

Over the last ten years Jamie’s legacy has extended far beyond our family and has touched many lives, particularly in Uganda. Jamie’s Fund, set up in Jamie’s memory continues the work in his name. We would like to encourage you, either as an individual or as a family, to join the Challenge and to aim to raise £200 or more. 

The Challenge will run through the whole of July. For the more active among us there will be some specific challenges that you can sign up to which have set targets  (such as walking 50 miles during the month, running 50 miles, swimming 10 miles or cycling 200 miles). These can be attempted individually or as a family or team of friends where each person banks some miles into the overall pot. If the set targets aren’t for you then we invite you to set your own target and we will cheer you on  (such as walking round the block every day for the 31 days of July, learning to swim, doing ‘dry’ July, losing half a stone or something else entirely).

Jamie’s Fund continues to provide amazing support for mental health in Uganda and with your help we are hoping to raise enough to continue to develop community mental health projects over the coming two years.

To join us in the Challenge, go to Jamie’s July Lifestyle Challenge Facebook page, and learn all about the ways you can get involved. Some of the challenges are listed under “Events”.

Avril Devaney

Why is epilepsy a problem we are involved with?

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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.