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

 

FRONTLINE MENTAL HEALTH STAFF OVERCOME COVID 19 RESTRICTIONS, THANKS TO mhGAP!

PCO* Joseph Wakabi, who leads the mental health team at Kagando Hospital, often gets in touch with encouraging photos and information about the clinics they have just held in the more remote villages.

However, the Ugandan Government, like many others, last week imposed movement restrictions to try to curb the spread of the coronavirus. This means that the team is unable to continue their usual programme of outreach clinics.

But…Joseph has just told us that they have been able to send supplies of medication to the outlying Health Centres. Not only that, because a staff member from each Health Centre was trained in the course of Kagando’s mhGAP roll-out programme, the Health Centres have been able to carry on treating and caring for those with mental illness, even under lockdown.

Lake Katwe outreach

 

And the regular Tuesday mental health clinic at the hospital still runs as normal; 40 people came for treatment yesterday.

Great work, Joseph and the Kagando team!

 

 

 

 

 

 

*A PCO is a Psychiatric Clinical Officer; these staff usually lead mental health services in Uganda.
Kagando Hospital lies to the west of Uganda, almost on the border with Congo.

Linda Shuttleworth, JF Trustee.

KAGANDO HOSPITAL MEETS THE GROWING NEED FOR MENTAL HEALTH CARE

 

Joseph Wakabi, a psychiatric clinical officer, and his small team of mental health staff used to hold their monthly outreach clinics at Kitabu and Kyarumba on the same day. The numbers of people coming for treatment have increased, so that now they visit Kitabu on a Monday and Kyarumba on a Thursday.

At Kitabu, patients such as James are seen at home to continue the treatment to improve their mental health. As the community begins to hear about the service, and understand more about mental ill health, and the possibilities for treatment, more families are asking for help.

 

 

 

This second man, newly started on treatment, has been shackled at home for more than a year, because his family did not know what else to do. these shackles are made from bent steel bar so they are on his legs permanently. Can you work out how to change his trousers – it can be done but not easily! Try and imagine living with these shackles. But with treatment we expect he will return to a more normal life and have the shackles removed with the agreement of his community

 

At Kyarumba Health Centre this week, 40 people were seen and treated for conditions such as psychosis and epilepsy.
Jamie’s Fund supports the work of Joseph and his colleagues, enabling them to take mental health care out to remote parts of the community where it is most needed.

Linda Shuttleworth, 13.03.2020

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

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!