CASUAL ENCOUNTERS OF THE USEFUL KIND

Travelling often brings us into close contact with strangers for a time; sometimes with unexpected connections made, and opportunities to tell the story of the reason for our journey.

Last November, flying to Uganda, I sat beside Liz Boonabanna, who talked about her work for the Belgian aid agency, Enabel. This was to build HR capacity in the public services of health and education. So we had an interesting conversation about the challenges and solutions of her work. (The man on the other side of me was a Ugandan professional footballer in the Norway premier league; interesting in a different way!) Once in Uganda, and visiting Kagando Hospital, I picked out the word Enabel in the list of partner and donor organisations to the hospital.

A bit bleary-eyed over breakfast in the guest house on our first morning in Uganda, a fellow guest, Fiona Beckerlegge, talked about how she had started a small child development centre, Kayaninga, in Fort Portal, to support parents and others meet the needs of their disabled children. She was a physiotherapist, who had initially come to Uganda to work for one family with a disabled child, and saw the lack of any help for the many children with physical and learning disabilities.

Later, at Bwindi Hospital, the mental health service lead, Kuule, asked us if we knew of any UK physiotherapists who might be willing to come to Bwindi for a short time to train the parents of children with cerebral palsy. We did, but we also immediately thought of the resource on the doorstep, Kayaninga, and put them in touch.

Leaving again for Uganda in two days, I wonder who I will encounter this time…

Linda Shuttleworth

A sad 16-year old

Enock was just one year old when he had his first epileptic fit. Now 16, his whole life has been affected by the fits and the responses of local people to both him and his family.

In most of Africa the traditional understanding of epilepsy is the same as for mental illness. There is a widespread belief that these problems are caused by demons, evil spirits who enter the person and cause the abnormal behaviour. Another explanation might be that someone else is jealous and has organised the local “witchdoctor” to put a spell or curse on the person who then develops what we know as epilepsy. Sometimes it is thought that the ancestors are angry with the family or community, and have chosen this person to become sick to demonstrate their displeasure.

Modern medicine has shown that epilepsy is caused by an abnormality in the brain, which we can see and measure through brain wave recordings and brain scans. We understand a lot about the cause, and we can treat the illness very well with the right tablets. However, people in the villages have little or no idea about such things.

If you believe that the problem is evil spirits, you would not think to go to a hospital for treatment, but you would naturally go to the local African church for prayers to exorcise the demons. Sometimes these prayers can go on all night, even for days and nights, giving the person no sleep.

Enock’s mum was left a widow with her two boys. They have tried traditional medicine and prayers. They have also sometimes come to their local health centre where they can get modern medicine for the epilepsy. However, sometimes the medicine has been out of stock. Over the years Enock’s treatment has been very erratic. In addition, the health centre staff who treated him forgot that a little boy becoming a teenager would need bigger doses of medicine as he grew up. For all these reasons his fits have not been well controlled.

People in the villages of Uganda are very afraid when they see someone behaving strangely. There is a fear that if the “possessed” person comes too close, the demons might enter them too! People with mental illness and epilepsy are also widely regarded as “useless”. The children at Enock’s school often taunted and mistreated him. He attended just one year of primary schooling before he gave up.

If you keep having fits, people in the community can treat you cruelly. And continuing fits do further harm to your brain, with the results that in in the end you can’t think very clearly or learn very easily. There are other possible harms as well, if you go on having fits, and you may come to physical as well as mental harm. This has happened to Enock who suffered a really serious accident.

Ugandan houses in the villages often have an open fire in the main room where everyone lives, cooks and eats. Recently Enock fell into the fire in a fit, and his arm was burnt to the bone. His mum delayed bringing him for treatment so the injury got infected, and Enock has now had to be admitted to hospital and has needed complicated surgery to start repairing the damage.

When we met Enock and his mum, I was struck by how sad he looked. He has little to do at home, a few household chores maybe, or making simple bricks. But many employers would never think of employing someone with epilepsy or mental illness. Who knows what might happen if the strange behaviour started when this person was at work?

We discovered that Enock has all the signs of depression, and we weren’t surprised. The mental health team will now get to know him better, and try to get his medication properly sorted out. They will talk with him, so that he can begin to feel better about himself.

We’d like to get him and his mum some support from the village health team worker. The team might even be able to help him with some work therapy. As with many of the Bwindi team’s patients, getting them into the kind of employment that earns regular money helps them gain some self-respect. And the community also learns that these people are certainly not useless.

Maybe some conversations with the local community could help too. In another town, the mental health team has worked really hard at telling people about modern treatment for both epilepsy and mental illness. Of the hundreds of people who heard this message, almost no-one knew there was such a treatment. However, if people could be encouraged to come for modern medicines and treatment, there might be much more hope for Enock and people like him.

We asked mum and Enock how they would feel about us taking a photo, explaining that we wanted others to understand what it is like for them, having to deal with these problems every day. They agreed. As we showed him his photograph, Enock smiled for the first time that day.

Maureen Wilkinson

If you would like to support us in bringing help to people like Enock, please click on the Donate button and make a donation, today.  All donations, large and small are welcome. Thank you

New Friends and New Skills – continuing the Professional Development

Arriving at the post-graduate centre at Butabika

They came from the east of Uganda, within a few miles of the Kenyan border. They came from the west of Uganda, from within a couple of miles of the border with Congo, They came from the northwest corner of Uganda just over the border into the Congo. Some we have been working with for up to six years. Some we had met for the first time only the week before, and they didn’t really know what Jamie’s Fund was trying to do.

In the end, thirty one people came together at the postgraduate centre at Butabika, the national psychiatric hospital in Kampala, for a time of professional development, under the leadership of psychiatric staff from Butabika, and supported by some of the team from Jamie’s Fund.

We had three great days together with laughter, sharing ideas, teaching and learning. There were challenges at different levels; there was no water for the whole hospital including the accommodation where they were staying. Some of the teachers turned up very late and weren’t as interesting as they could have been; time keeping to begin with wasn’t great; but we improved that significantly.

Dr Hafsa

We were delighted that Dr. Hafsa, the government’s mental health lead came to open our workshop. She was very appreciative and encouraging about the developments that Jamie’s Fund is supporting.

The three day workshop covered a range of topics that included psychotherapy skills training, management of emergencies such as agitated or suicidal patients, and rehabilitation of patients with longer term illness.

Sessions on service development were particularly well received, because delegates had begun to catch the vision of what might be possible if they could bring services to the very villages where their patients live. Where people can attend their local health centre they don’t have to pay transport to get to the hospital, and the health centre staff can get to know them and their families. The Bwindi team started this kind of community service first and so provided a very helpful model for others to think about, imagining what they might develop in their own settings. We also heard about their alcohol harm reduction service: an important challenge all over Uganda.

Some of the audience

Service development needs excellent leadership and good teamwork, topics that provoked a lively interaction. We included discussion on the well-being of professionals working in mental health, which can bring particular pressures and certainly carries its own stigma.

One of the recurrent themes became almost a running joke: Don’t forget to collect the data! We all need data to discover the impact of any new developments. And Jamie’s Fund needs that information if we are to advocate for more resources.

Over the three days everyone worked hard but it wasn’t all work and, towards the end of the workshop, we all went out for a celebration dinner at a nearby hotel where we enjoyed having time to talk with each other about life apart from work. The challenges that some people had overcome in order to reach their current position were inspiring. One older man told me how, when he went to secondary school, he had to walk all the way, some 70 kilometres in 2 days, carrying his belongings in a wooden case on his head and on top of that was his mattress that he slept on. Others were beneficiaries of the sacrifices that the families had made to fund their education.

Dr Basangwa, the executive director of Butabika came to close the workshop. He had taught many of the people on the course and he was treated with respect and affection. It was impressive that he still knew many of their names.

A group photo with Dr Basangwa

 

Too soon it was over. People departed clutching their attendance certificates and bags printed with the Jamie’s Fund logo. The appreciation and gratitude of everyone involved was touching. Other than the learning and skills training, one of the great benefits of the workshop is the mutual encouragement to aim even higher: One delegate said he came thinking that his hospital was doing well: he then discovered there was so much more they could do, and he left full of plans for the future.

A participant receiving her certificate

We intend to organise another workshop next year, as we believe it is valuable for people to come together to compare experiences of the challenge of working in mental health, an area in which the staff share the stigma felt by their patients. In their own workplaces they are often isolated and unsupported. These days proved a very worthwhile time together.

As you will appreciate there is a not insignificant cost to bringing people together in this way. The benefits, however, far outweigh the cost as students are energised to try new approaches, encouraged by the stories of what is happening in other areas and supported by the new friends and colleagues made. The investment in these committed people is already benefitting large numbers of people across Uganda. If you are able to support this initiative, or other work in which Jamie’s Fund is involved, please go to the Donate site now

Participants with their bags

Ewan Wilkinson

We are off to a mental health Professional Development Workshop in Kampala!

On-going professional development is hugely important in any profession and perhaps even more so when those professionals often feel isolated by working alone and far from others. Bringing practitioners together allows not only the development of knowledge, skills and understanding but also the building of new support networks.

Jamie’s Fund is proud to again be sponsoring a professional development workshop in at the National Psychiatric Hospital at Butabika in Kampala in September 2019. This follows last year’s very successful inaugural workshop.  This is a helpful location as it is reasonably central and also some of the tutors will also be from the government services.  The programme is being led by Joshua Ssebunnya. Joshua is a well-known psychologist with many publications to his name, and he is based at Butabika.  We are fortunate to have his support.

We are greatly encouraged that so far, we have 28 people coming from 17 different hospitals or health centres, across Uganda.  We are also delighted to be welcoming one isolated member of staff just over the north-western border from Arua in the Democratic Republic of Congo.  Many of those attending are staff we have been working with over the past few years, but others we will be meeting for the first time.

Generous donations have covered about three quarters of the cost of the workshop, but we are still looking for a further thousand pounds or so.  If you are able to contribute please either e-mail info@jamiesfund.co.uk or go to the donation page and say your donation is for the workshop.

While we are in Uganda we intend to make the most of being there and to visit as many hospitals and health centres as we can.  This will enable us to see where people are based, to understand local issues and concerns and to develop relationships.  Also, and perhaps most importantly, it is encouraging for staff who can feel isolated to be encouraged and affirmed in the vital work they are doing.  Excitingly, the number of hospitals and health centres to visit has doubled as we have recently been made welcome to build the relationships with those run by the Catholic church in addition to the 12 we already work with affiliated to the Anglican Church of Uganda.

This increase in the number of locations will further stretch our slim resources but it will also means that we are supporting a much wider network of hospitals and health centres. This will further strengthen the support network that is already developing. We believe that as the network develops the hospitals and mental health staff in each area can do more to support and encourage each other.  Please click for a map of all the places we are in contact with.

Three of the Jamie’s Fund team are going to Uganda on this occasion: Linda Shuttleworth & Maureen and Ewan Wilkinson.  We are also delighted to be joined by Dr Simon Tavernor, a consultant psychiatrist in the UK who is considering working with Jamie’s Fund.

Maureen and Ewan Wilkinson will be writing a blog during their visit to Uganda and you are welcome to follow what they are up to here.

Ewan Wilkinson

A LEGEND RETIRES!

Nancy Mwebesa

Psychiatric Clinical Officer Nancy Mwebesa was given a memorable send-off by her friends and colleagues at Kisiizi Hospital at the end of June. After a lifetime working in Ugandan healthcare, Nancy is taking a well-deserved retirement. She won’t be going too far away, however, as we hear that she is going to make her home in Mbarara town, a couple of hours up the road. When we spoke with Nancy about retirement plans during our recent November visit, she was looking forward to the next phase in life, and having more time for her church, her garden, for friends, and for her handicrafts.

Some of us have known Nancy since 2010, our first trip to Kisiizi, to explore the possibility of a mental health partnership between Kisiizi Hospital and Cheshire and Wirral Partnership NHS Trust.

At that time, Nancy began to tell us something of her story, which began with how she had come to undertake Psychiatric Clinical Officer training at Butabika, the National Mental Hospital in Kampala. She had completed it 3 years previously, which allowed the first PCO, Yusufu Kuule, to leave for Kampala to study Community Psychology at Makerere University. Nancy had started work as a young woman as a Nursing Assistant, but soon realised that she was capable of more, and trained as an enrolled nurse, and then as a registered general nurse. Her compassion for the mentally ill led her to further training and she finally qualified as a Registered Mental Health Nurse. Training is individually costly in time, effort and money, and she had hoped that was an end of it, but was persuaded that there was a need for her to train as a PCO. Reluctantly, she uprooted to Kampala with her children, to live in a rented room in the city for the two years, in very impoverished circumstances. However, she embraced every training opportunity offered with enthusiasm, and was obviously appreciated by her tutors for her ability and motivation.

As we got to know each other better, later in the visit, she told us of the earlier difficulties she had had to overcome in her long journey. She had 4 children, the middle ones being twins, and when the youngest was very small, her husband left her to take up a relationship with a much younger cousin, with whom he has remained and now has 9 children by. Nancy and he separated. Nancy was devastated, almost wanting to vanish from the face of the earth.

Later, she further told us of how as a child she used to blame her parents for her weak leg, but eventually realised they had done their best to seek treatment for her. (An injection for a skin infection had gone wrong and caused a wasting paralysis of the limb, which never fully recovered.) She did not start school until she was 12, through her parents’ worry and protectiveness of her. They feared that the long walk to school would be too much for her. Her father didn’t expect her to attend beyond Primary 3, but Nancy’s determination took her much further. Even at retirement, she also credits her father’s pride, love and encouragement for what she has achieved in life.

Nancy has talked to us about her willingness to tell her story. She says that it shows others that they are not alone, that recovery is possible, and that it is good not to dwell on or blame the past, but to find ways of moving on. An inspiring woman, Nancy Mwebesa.

Community Outreach

The value of mental health outreach into the communities of rural Uganda was demonstrated again this week as the team from Kagando Hospital, led by PCO Joseph Wakabo, held an outreach clinic at Kinyamaseke, supported by Jamie’s Fund.

Kinyamaseke is 12km from Kagando Hospital which can take up to an hour, travelling by car on local roads. This community is located just north of the Queen Elizabeth National Park in the East Africa Rift Valley and is about 45km south west of the district capital of Kasese.

The team, consisting of Joseph Wakabi psychiatric clinical officer, and Robert Baluku a mental health nurse as well as the driver, held an outdoor clinic and were able to meet 43 patients during the visit. This is highly significant given that most of these people would otherwise have had to walk to the hospital to meet the team to collect the regular medication upon which they depend or to receive an initial diagnosis for their condition.

Crops growing near the clinic

Of the 43 patients, just over half live with epilepsy, a condition that is treated by mental health teams in Uganda and in much of Africa. Of the remaining patients, there were a number of conditions including psychosis and one person with possible Parkinsons disease. All the patients will be seen again on the 30th May provided that they can again get to the clinic. The majority of patients live in the sub-countyof Munkunyu and the maximum distance patients had to walk to the clinic was about 5km.

 

Last month two men who had been shackled because of their mental disturbance were started on treatment and we are very pleased to hear that it was now safe for them to have the shackles removed. This will enable them to return to being constructive members of the community.

The cost of providing a clinic like the one at Kinyamaseke may be as little as £50, but it can transform lives. Jamie’s Fund is pleased to support this work but it depends on your generosity and support. Please donate today, if you can.

Concert raises over a thousand pounds

The Castle Singers raising money for Jamie’s Fund

The Castle Singers, a Heswall choir, gave a concert in support of Jamie’s Fund in Heswall URC Church at the end of April. It was an enjoyable evening with a light and varied programme
including the old Flanders and Swan song “The Gas Man Cometh” and a spirited modern rendition of “To God be the Glory”. There was a good turn out with people coming from North Wales and Liverpool as well as Wirral.

Some people had donated generous prizes for the raffle. The first prize was for afternoon tea for 6, provided in your own home.

Overall one thousand and fifty pounds were raised. This will fund the training of seven people on the mhGAP courses we are organising in Uganda. Warm thanks to the Castle Singers, to all who helped on the evening and to those who supported the event.

Home Visiting

In the UK we occasionally ask the doctor to visit us at home, if we are particularly ill. In Uganda a home visit from the doctor would be very unusual, certainly outside a city. In rural areas your options are limited. There may be a local traditional healer but if you want to use “so-called” […]

Living with Poverty

A recent UN report from the Human Rights Council (2017) focused on mental health provision around the world, and stated that public policies continue to neglect the importance of the conditions that lead to poor mental health. These include violence, disempowerment, social exclusion and isolation, breakdown of communities, and poverty.

Health care in general can make a big difference to how countries grow their economies. A commission by “The Lancet” medical journal concluded that countries received £10 benefit for every £1 invested in health care and prevention of disease. But many countries have only a small proportion of the population paying tax, so governments have little money to spend on health.

Poverty is often made worse by corruption. In Uganda, fertiliser can make a big difference to the amount of a crop harvested. But it can be impossible to know if the fertiliser on sale is genuine or not. Do you spend your small amount of money on what may be fake, and risk wasting your money, or risk a smaller harvest and have less to sell, to pay school fees etc? Hard decisions all the time when you have so little.

In the news, we sometimes see extreme poverty, hunger and need, perhaps caused by conflict or natural disaster. Everyday poverty is often overlooked, and yet it is a gruelling part of life for so many people. In Uganda, about a third of the population still exists on less than £1 a day, and lacks access to sanitation and clean water. This is true in towns and cities as well as the rural areas.

One of the challenges the medical services we support face is that people with mental illness and epilepsy often have to pay for their medication. The government supplies are not adequate for whatever reason, and the non-government units have to charge. We are exploring a “community drug bank” which has worked elsewhere in Uganda. In this a community group all contribute and buy their drugs at cost. It is still hard, when you have so little money.

Many visitors to rural Africa are challenged by the fact that many local people living in poverty enjoy life, in a way that we in rich countries could learn from. They are also willing to share the little they have in ways that we, with so much more, are not always willing to do.

Ruth’s Story

 

Ruth – who had just completed a night shift at Butabika and travelled for 4 hours to meet us

To mark International Women’s Day here is Ruth’s story. She is one of many committed
nurses working in rural areas in Uganda, with limited resources and doing the best they can.
Ruth Nanteza is an enrolled nurse at Rushere Community Hospital. The hospital is in rural
south west Uganda and is an hour’s drive from any other hospital. Ruth is the only member
of staff who has any specialised mental health training, and so she is the one her colleagues
turn to when their patients are mentally distressed.
This can mean that she is the person called to the General Ward to talk with someone who
has tried to take his own life by swallowing cattle pesticides. Ruth does her best to
understand what has brought him to this desperate action and to help him to realise that
there are other solutions to his problems. She will also make a follow up appointment after
he is discharged. Sometimes quite simple things like having an appointment can make the
difference in keeping someone alive.
Ruth is also asked to help when patients on the general or maternity wards are recognised
as having depression, or mental ill health associated with HIV/AIDS. Sometimes she is asked
by the police or the courts to decide whether someone has the mental capacity to stand
trial; this can include for very serious and capital offences, which is a heavy responsibility to
bear.
Ruth usually holds regular mental health Out Patient clinics in the hospital. At the moment,
however, she is being supported by the hospital to undertake further training at the
Butabika Government Psychiatric Hospital near Kampala. This takes 2 years of studying. This
will enable her to qualify as a Registered Mental Health Nurse, and return to Rushere with
more skills and knowledge.
Not that she has ever really gone away. In every break in her training, she returns to
Rushere to work at the hospital. Not only that, but on the day we visited, she came off a
night shift at Butabika and made a 3 to 4 hour bus journey, especially to meet with us. Now
that’s commitment!