Derrick Kizza
It will be very helpful because when you find time to read, you will see where we came from, the history. You will see the history. You can even see our first board, the very old people now, some of them are elderly, and some of whom have crossed the border. Most of the history about our humble beginning in “Shackling Mental Health in Uganda”, a publication about our 20 year history.
Kasumi Ito
Yes.
Derrick Kizza
Unshackling mental health in Uganda. It will tell you where we have come from.
Kasumi Ito
Okay, so nice. Thank you.
Derrick Kizza
My name is Derrick Kizza. I am the Executive Director. First, MHU started in 1997 as a very small community-based organization, but registered as national structured organization started in 2001. That's when we were registered with the National NGO Board as a national NGO to work start registering local district chapters all over the country.
Kasumi Ito
Registered legally?
Derrick Kizza
Yes, registered.
Kasumi Ito
Okay.
Derrick Kizza
Registered as a National NGO in 2001. But we held a mini general assembly to give an interim board the mandate to run the organisation. In most of the material (Unshackling Mental Health in Uganda), it's in there. That's what we are. It's a membership organization. What happens is that we have people who meet once every five years. These are members that come from the local district associations. The district associations nominate people to the district assembly. There is the district general assembly. It the district assembly that nominates people who come as delegates in the National General Assembly, which meets once every five years.
What happens is that the General Assembly then elects board members.
Kasumi Ito
Yes, from the representatives.
Derrick Kizza
Yes, from the representatives from the district. What happens is that, among the 9 board members, seven of these are people with a lived experience of mental health problems while the other two are representative of carers (family member or concerned community person) and psychiatrist or psychiatric clinical officer.
Kasumi Ito
Nine.
Derrick Kizza
You have the Chairperson, you have the Vice Chairperson, you have the General Secretary, you have the Treasurer, so those are four. You have the youth representative, those are five. You have the male representative.
Kasumi Ito
Male?
Derrick Kizza
Male.
Kasumi Ito
A male, yes.
Derrick Kizza
Yes, male representative. You have female representative. Those are seven. The other two positions, you must be a caretaker, a family member, just a family member taking care of the person with a mental health issue. Then, the last position is taken by the people who treat a psychiatrist or a clinician or something like that. That's how we are designed as an organization.
What happens is that the board oversees the work of the Secretariat. They recruit people who come to the Secretariat to work here, but they also oversee. What happens is that the Secretariat reports to the board, and we have board meetings that are quarterly, so every three months, which is a quarter, when we have a board meeting. The board does the monitoring work, but also does the approval of budgets, work plans, and reports, or any adjustments, whatever. That's what the board does. They do the oversee, and they report back to the General Assembly five years after that this is what we have been able to achieve in the five years. This is what we were not able to achieve.
That's what the board does. We have members based in the districts. They are like the local chapters, the district local chapters. What we do here, involves membership mobilization, and local fundraising. We do a lot of partnership, both at national level, but also support partnerships at the local chapters. We do a lot of advocacy. We are largely an advocacy organization.
In the process we hold government responsible, accountable to commit funding, improve services, access to drugs, and on some of the commitments it has made, both international but also local.
Kasumi Ito
Drug?
Derrick Kizza
Medication.
Kasumi Ito
Medication, yes.
Derrick Kizza
Yes, but also other social aspects; employment, access to information, access to adequate standard of living, access to rehabilitation. Access to justice, is also very important. Those are some things that we do kind of push for quite a bit here.
We have staff here at secretariat, about 22 now. We also have a national helpline, which has about seven staff behind the calls. One of them is a psychiatric nurse.
What happens is that we do report to the board quarterly, but we also kind of share a lot of information with our membership through the website, through Facebook, Twitter, and other social media avenues. But also, meetings, we might have national meetings here in Kampala, but also through the board because the board comes from the district. They are not a part of the people who move around Kampala. These are people who are elected from the membership, so they kind of bring issues but also report back to the membership.
I do not know if I have said enough about it, but you can ask maybe.
Kasumi Ito
Yes. I’d just ask you, who is your main fund supporter or financial supporter?
Derrick Kizza
For the last 20 years, the main funder has been Danida…
Kasumi Ito
Danida?
Derrick Kizza
The Danish government.
Kasumi Ito
Okay.
Derrick Kizza
What happens is that it's kind of a sequence. Let me just draw something here. You have the Danish government, which is Danida here. What happens is that Danida gives money to The Disability People's Organization of Denmark, which is the umbrella of disabled people's organizations in Denmark. Then, under the Disability People's Organization of Denmark, they have members. One of them is SIND Mental Health. SIND means mind. SIND Mental Health Denmark then applies for money from DPOD. MHU and SIND work together to apply money from here. Then, they implement the projects.
Money comes from Danida to DPOD to SIND, then to Mental Health.
But even in Norway, I can tell you. It’s the same. Money comes from NORAD, then Atlas, then Mental Health Youth, then MHU. It's the same structure as in Denmark. Money comes from NORAD, which is the Norwegian government. Then, it comes to the umbrella. Their umbrella is Atlas Alliance. Then, from Atlas Alliance then it comes to Mental Health Youth Norway, which is the same as SIND here. Mental Health Youth Norway.
Mental Health Youth Norway and MHU apply money and get it from Atlas Alliance. SIND Mental Health and MHU apply for money and get it from DPOD. DPOD gets from Danida. Atlas Alliance gets from NORAD.
Originally, the money comes from both the Norwegian and the Danish government. I think they are the ones who have had that long interest a lot in disability work.
The Japanese government have supported disabled people especially in area of education but MHU have not been able to access money from them. They are more into scholarships education and then they have that. But they have not been much more pronounced in funding charity work.
Kasumi Ito
Yes. I think you have strong connection with Denmark SIND and how did you get the connection with Norway organization of persons with disabilities?
Derrick Kizza
In Denmark organization, if you will read the first pages of our publication and see the history.
Now, in 2015, I met the head of Atlas Alliance. He was on a trip here in Uganda.
Kasumi Ito
Oh, really?
Derrick Kizza
He asked whether there was an organization that was working with people with mental health problems. When he asked in the disability movement, they referred him to us. He came and visited. He was very impressed. He was happy that there was an organization. He said let's keep the conversation. But later on, I knew that he had had lived with a mental health problem. He had a mental health issue. He was a survivor, in a kind of a way. I met him and he was very impressed. We started the conversation.
Then, in 2018, he wrote to me in February, telling me that they are organizing a Mental Health Conference in Norway. He wanted MHU to make a presentation. I traveled to Norway, in November 2018, made a presentation. While in Norway, on the sidelines, we were also discussing partnership. He told me that the system is NORAD at last, then there must be someone here in the middle to work with MHU.
For them, they could not jump the queue and then work with MHU. There should be a member. He introduced me to Mental Health Youth Norway while in Norway. The young people were very energetic. They said we want to go south, and then start. That's how our partnership started. They come here. They paid a pre-visit in 2019. Then, we wrote the proposal together. Then, they submitted it. Then, in September 2020, we had our grant. That's how the partnership started.
Kasumi Ito
Okay, thank you. How long did you work as the Executive Director here?
Derrick Kizza
From October 2013.
Kasumi Ito
2013.
Derrick Kizza
But before, I had been a Project Officer, then a Program Head, then I became Executive Director. For me, it has been a move through the ranks.
Kasumi Ito
Okay.
Derrick Kizza
Coming from down. Initially, in 2000, I was at university. I started working with MHU as a volunteer. Then, later on, I was involved on a project. Then, Program Head, then Executive Director.
Kasumi Ito
Which year did you work with the Mental Health Uganda?
Derrick Kizza
When I started?
Kasumi Ito
Yes.
Derrick Kizza
2002.
Kasumi Ito
2002, oh, so it is 20 years.
Derrick Kizza
Yes, so in 2002, I joined partly as a volunteer. Then, later on, I became a Project Manager. Then, later on, in 2007 I think, I became a program person where I worked for six years before I became Executive Director in 2013.
Kasumi Ito
Okay. Yes, thank you.
Derrick Kizza
I am the only one here who still holds the institutional memory. Also, David who was talking to you…
Kasumi Ito
Yes.
Derrick Kizza
Yes, it was David.
Kasumi Ito
Later, can I ask the memory of institution?
Derrick Kizza
Institutional Memory.
Kasumi Ito
Yes.
Derrick Kizza
Let me pick some cup of coffee.
Kasumi Ito
Yes.
Kasumi Ito
How do you do election of the board member? Do all members have the voting rights?
Derrick Kizza
No. Voting right? What happens is that in the General Assembly, you have people with the lived experience of mental health problem, people who have a mental health problem. You have a caregiver. Caregivers are people who are from the family. They are also nominated from the district assembly. You have the user of service who is the person with mental health problem. You have caregiver. You have also psychiatrist or clinician or doctors.
What happens is that for the seven positions, the ones I talked about, for you to vote, you must be a user of service. You must be a user of psychiatric service. You must be a person with a mental health problem. The caregivers are elected by only caregivers. The psychiatrists are elected by only doctors. Because they are actually selecting someone who are representatives.
Kasumi Ito
Yes, it's okay.
Derrick Kizza
That's how they are elected. The voting rights for the seven positions, you must be a user because they are the primary target of the organization.
Kasumi Ito
Okay. Also, you told that there is 22 staff and member of helpline. They are paid by Mental Health Uganda.
Derrick Kizza
Yes. The staff are paid by the projects.
Kasumi Ito
Project? Project money, it came from Danida?
Derrick Kizza
Danida and NORAD.
Kasumi Ito
NORAD.
Derrick Kizza
Norwegian government.
Kasumi Ito
Yes. Board members are also paid.
Derrick Kizza
They are not paid. But they are facilitated to come for board meetings with travel, and accommodation while they are here. the money to facilitate this comes from the project.
Kasumi Ito
Okay. Executive Director is not member of the board member?
Derrick Kizza
No. He is ex-officio on the board. He is the one who reports about the work on the Secretariat. He is the one who gives the feedback. He is the link between the Secretariat and the board. But Director doesn't vote. If they want to vote on an issue, the Director doesn't vote.
Kasumi Ito
Okay.
Derrick Kizza
Actually, when they are writing minutes, they write, these are the members who attended and then they say in attendance was the Executive Director. You are just attending. You are not a member of the board.
Kasumi Ito
Okay. Can I go back to the institutional memory?
Derrick Kizza
Yes, no problem. You want to know about the…?
Kasumi Ito
How did you start?
Derrick Kizza
Now, the issue was, there was Dr. Florence Baingana. Dr. Florence Baingana was the Head of Mental Health at the Ministry of Health. A group of people who were taking medication at one of the districts here in the local, decided to meet her. They had a conversation first, was that they could have had issues around drugs. But they were also facing other challenges, especially in social protection. Access to employment, access to other health services, besides just medication for mental health. They had problems with the other social aspects like access to food, paying school fees for your children etc.
They said that it is important to take the discussion beyond just medicine, if we are to achieve our aims and goals.
But also secondly, there were still human rights abuses, people being beaten in the communities because they had mental health problems. Because they had this need, then they decided to meet Dr. Baingana, working at the Ministry of Health. She was the one who was the person coordinating. Right now, she is outside Uganda. She is working as the WHO Advisor for Africa. She is the Mental Health Advisor for Africa.
Then, Dr. Baingana said, okay, I have some contacts in Denmark. I will try to initiate this conversation. That's how this journey we have moved, we then started. Contact is made with the organization SIND in Denmark. Then, we start. You will be able to read some of the smaller membership mobilization. It's something that we have done. We have good support from Denmark over the years now and all the clout we have in the media, and it has been largely because of those first 20 years with Danida. They have been very supportive, yes.
I mean, setting up structures, general assembly, having a board, having a national office. These are things that have been supported a lot by Danida because one of their important areas of interest is governance. Governance is something that they put a lot of money in.
Kasumi Ito
Some members went to Denmark?
Derrick Kizza
Yes, a few members, exchange visit to Denmark.
Kasumi Ito
Before establishing the…
Derrick Kizza
Yes, before establishing. Just to know each other. Because people were coming from the other side to visit, so they thought these ones should also go and visit because SIND is a membership organization like ours.
Kasumi Ito
Okay. Can I go to the international activities? I think Mental Health Uganda held a meeting in 2009 in Kampala. Is there some document or something like that, relating to that? I think, how did you hold the meeting? That is I want to know.
Derrick Kizza
First was the World Network of Users and Survivors of Psychiatry. That's the one we hosted in 2006 first. In 2009, we hosted the Pan African Network. That was the founding session of the PANUSP, what they call PANUSP. The intention was to have representation at the African continent. That's not just the world network but we could also have a body on the African continent that supports, that brings us together. That's how PANUSP was born. PANUSP was born here in Uganda. It was kind of a general assembly, like kind of an assembly but also founding session. Collaboration, how will we collaborate better?
What could we do? Maybe support, because one of the key goals of PANUSP was also to support the organizations of our nature in the countries that they were not existing. The reason why it came here, because MHU was more organized compared to other people on the continent. We were already funded. We had the membership organizations, so many countries did not have local chapters. They had individuals, but then they didn't have the institutional structure.
First was to learn from Mental Health Uganda, what are they doing? Then, second was to how do we support each other.
In the countries where they have some individuals, how do they have such structures? But also, how do you transfer this model to other countries where you don't have structures completed? A part of that was also to visit some of the districts nearby to see what the members were doing, just to get inspiration.
Kasumi Ito
How many days takes the General Assembly?
Derrick Kizza
The General Assembly that we hold here?
Kasumi Ito
Yes.
Derrick Kizza
Every five years, or the one, the PANUSP?
Kasumi Ito
Yes.
Derrick Kizza
It was, I think, two active days.
Kasumi Ito
Two.
Derrick Kizza
Two active days.
Kasumi Ito
Yes. Which local district they went to see?
Derrick Kizza
Mpigi, it's just nearby, about 65 kilometers from here.
Kasumi Ito
Okay. Is it the Kampala office?
Derrick Kizza
It was the founding association.
Kasumi Ito
Of the branch of the…
Derrick Kizza
No, that's where Mental Health Uganda started. Mental Health Uganda did not start here in Kampala. It started in Mpigi. It's about 60 kilometers from here.
Kasumi Ito
Okay. How did you help the other countries to establish the organization like this? How did you help other country activists to establish the organization?
Derrick Kizza
Who, I?
Kasumi Ito
Yes.
Derrick Kizza
As a person?
Kasumi Ito
Yes.
Derrick Kizza
I supported a lot in membership mobilization, because that has been our backbone to make sure that we have members that are registered, but are also more organized, and can be able to provide that unified voice that you need when you are doing advocacy. Because sometimes, when you are doing advocacy, it's important also for people to know, the ones you are pushing, that they are numbers, so you are not doing it as an individual. But they are also numbers that are much more involved. That was something that I did.
But I was also involved a lot in research and documentation, especially of the social aspects around the mental health, they have poverty in their homes. What is the livelihood needs of people with mental health problems, but also their families, documenting them because this is what largely informed the broader disability agenda, especially around social protection?
Kasumi Ito
How did you do research? How did you find the…?
Derrick Kizza
You go and meet members and then you pick information from them. What are the situations they are going to do? You could do home visits. What are the situations they are going through? How do they want to be helped? It supported our fundraising with Denmark and other sources. But it was also helping us to engage the government on how to integrate people with mental health problems in their strategy.
Kasumi Ito
So…
Derrick Kizza
It's unfortunate, we don't have an activity there. If we had an activity there, we would have driven there and then you'll see. There is even a Mental Health House.
Kasumi Ito
Mental Health House.
Derrick Kizza
The group was very strong, and they even constructed a Mental Health House. You read about it here in Uganda.
Kasumi Ito
Okay. It's the starting place of the…
Derrick Kizza
Yes. That's where Mental Health Uganda was born. If you are interested a lot in institutional memory, it would have been quite important to visit them.
Kasumi Ito
Okay. Yes, I’d like to visit. Mental Health House means the institution on the hospital? Is Mental Health House in room of hospital?
Derrick Kizza
It is outside.
Kasumi Ito
Outside.
Derrick Kizza
Where Mental Health Uganda office or structure was built was outside the hospital, but on the hospital land. It's the Hospital Director who gave them the space to construct.
Kasumi Ito
Okay. I would like to know more about local branch. How many local branches are in Mental Health Uganda?
Derrick Kizza
Currently, about 41.
Kasumi Ito
Forty-one?
Derrick Kizza
What happens is that some of them are cross regional. I do not know whether you understand that. You might have a district like Mbale. But then you have Sironko. You have Budaka. You have Manafwa. You have a lot of districts surrounding Mbale. But then, you hold this as the local chapter. But then, you have members coming from here. They like to associate themselves under Mbale because Mbale was the mother district. It was the original mother district here. Otherwise, if we were to count the districts where our members come from, then the chapters would be much more. But for us, it's not just about the expansion. It's also expanding, but in a systematic way.
Kasumi Ito
The 41 representatives will come at the General Assembly of Mental Health Uganda.
Derrick Kizza
Yes.
Kasumi Ito
Okay.
Derrick Kizza
That's where the representatives come from. They might come from just those local chapters. But then, when you count the districts where they come from, they are even much more than the local chapters. Only I have told you that some of these people prefer to belong to one bigger entity. Like if someone says, no, I don't want to be part of the town outside Tokyo. I would like to be part of Tokyo, even though I am coming from the neighborhood.
Kasumi Ito
Okay.
Derrick Kizza
Yes. Tokyo becomes the mother district. All the representatives come from there. Even those local chapters I am talking about, each of them has the leadership. They have the Chairperson. They have the Vice. They have the General Secretary. They have the Treasurer. They have the youth representative. They have the male and female. Then, they have a caregiver. I mean, the same way the structure is nationally within board is the same that is at the local chapter. For them, they meet monthly.
Kasumi Ito
Monthly, oh really?
Derrick Kizza
Usually, their meetings are organized on a day that they are also going to get drugs. They find a day when they have to be at the clinic. Then, after the clinic, they have all got their drugs, then they sit down, and then have a meeting. There must be a meeting once every month in the district chapters while for the board members, it is quarterly.
How do they survive?
They usually survive on the local chapter membership fees. There are some annual subscription fees that local members pay just to support the running of the Executive Committees. During the meeting, they read for the members the minutes of the previous meeting. First, they have an agenda. Then, they approve the agenda, they read the minutes. Then, you have reporting from the Executive. Then, the Treasurer is saying this is what we have got from membership fee or other revenues. This is what we have used then. But also, a lot of work around fundraising because there is some money that government puts at local governments. It's called the District Disability Grant.
Kasumi Ito
The Danish government or Norwegian government does not support the local activities.
Derrick Kizza
It supports them through MHU.
Kasumi Ito
Okay.
Derrick Kizza
It is MHU that writes. Together with the local authorities, they write the application for the grant, and then, the donor monitors, and oversee the utilization of the grant. We are the ones who account it back. But they can also come from abroad every year. They usually come to visit, to get in touch with the beneficiaries of their grants.
Kasumi Ito
Okay. I would like to go back to the Pan African Network. Danish government also supported to hold the…
Derrick Kizza
No.
Kasumi Ito
No?
Derrick Kizza
No.
Kasumi Ito
How did you find the financial support?
Derrick Kizza
Usually, it is the people attending who supported the delegates from these countries. Some of the delegates from the countries had the resources. But I don't remember. We also got some funding from some of the donors. I don't remember them exactly. But there were some donors who supported us the most. There was some co-funding. But also, some money came from the delegates themselves. They could get money from back home. Yes, something from government for them to attend the session and has also had some few donors who were supporting their initial work. Then, they supported them to travel. It was case-by-case basis. If you don't, then we could call support.
Kasumi Ito
How did you mobilize the people from other countries?
Derrick Kizza
When we started, and then, we were doing, many people reached out to us after knowing that a group had started, they are registered as a national NGO here in Uganda. People started to write to us directly. Others went through the umbrella, NUDIPU, the National Union of Disabled Persons of Uganda. Others went through the DPOD in Denmark. Others went through Danida. Then, they kept referring them to us. In the process of our interaction, we were also asking them to help us reach out to other people. It's kind of a network. But we had initially a website. We were also attending meetings, regional meetings, talking about MHUs, then people picked interest.
Kasumi Ito
You already had website at that time.
Derrick Kizza
Yes, we had but a very local website it was. I think it was fitting at that standard at the time. Our website is even more vibrant now.
Kasumi Ito
Yes. I would like to go to the General Assembly of World Network.
Derrick Kizza
In 2006, it was hosted here. I think it was the first of its kind in Africa.
Kasumi Ito
Yes.
Derrick Kizza
I have not heard another here. But I think the intention was to reach out to Africa. But also, actually, it's from that World Network that one of the key outputs was that it is important to host the Pan African Network. That's how Mental Health Uganda then hosted it about two years later.
Kasumi Ito
Who supported financially the World Network?
Derrick Kizza
I think I remember it was the local donors, like OSIEA, The Open Society Initiative. They supported I remember, Tides Foundation.
Kasumi Ito
Tide?
Derrick Kizza
Tides, T-I-D-E-S, Tides Foundation. Some other donors, I can't scramble them off head.
Kasumi Ito
Yes. Mental Health Uganda already had connections such as International Founding or Charity organization?
Derrick Kizza
Yes, exactly. At least at that time, in 2006, we were about eight years old but also five years stronger because we had now been registered as a national NGO of about five years, from 2001. We were stronger. We hosted individuals that were working remotely in their countries, like Zambia, Ghana. I remember there were delegates from Zambia, Ghana, Nigeria. Of course, here in Uganda, but Kenya and Tanzania, Rwanda. That's how we managed to see some of the organizations. For instance, some of the organizations that are stronger are the ones that are around us here. However, I do not know their status now. But at least, I know that they might have problems with the funding, which is very critical.
It's usually one of the things that breaks down these institutions. But I remember that the Kenyan Users and Survivors of Psychiatry, USPK, started after the PANUSP here, the USPK, Users and Survivors of Psychiatry Kenya; then TUSPO in Tanzania, Tanzanian Users of Psychiatry. NOUSPR in Rwanda, National Organization of Users and Survivors of Psychiatry, of Rwanda, NOUSPR. NOUSPR, National Organization of Users and Survivors of Psychiatry, National Organization of Users and Survivors of Psychiatry, in Rwanda, NOUSPR.
That's how they started the…
Kasumi Ito
After the Pan African Network…
Derrick Kizza
After the Pan African, so there were efforts to kind of start and then you have MIND, there was MIND in Ghana which later became MEHSOG. It's the Mental Health Society of Ghana.
Kasumi Ito
Ghana.
Derrick Kizza
Yes. Then, you have another one in South Africa. I mean, it's after that that then some of the people went out to start. You have the one in Zambia. I forgot the name. MHUNZA, with Sylvester Katontoka. He is now the Chairperson of the PANUSP now. MHUNZA, it started the after the PANUSP founding session here.
Kasumi Ito
You connect through such a local organization? How did you have a connection with the Open Society Forum or the Tides?
Derrick Kizza
No, they are already working, they were already funding some small work around disability here in Uganda already.
Kasumi Ito
In Uganda, okay.
Derrick Kizza
Yes, they were working with the NUDIPU but also some other DPOs, Disabled People's Organization within Uganda. We already had the contact, so we could easily reach out to them and ask, are you interested in this role? Are you interested in that? Also, the Australian Aid, they were already doing work here. When we reached out to them, they were very interested.
Kasumi Ito
Okay. Can I go back to the Pan Africa? How board members of Pan Africa Network have the Board Member Meeting around that?
Derrick Kizza
Yes. Initially, what we had agreed is that because then the Pan African Network of Users were coming from different countries, the idea at the time was that they would meet on Skype. But if funds allow, they could meet at least once a year. The country that hosts would depend on the donor, or the size of the funding. That was the idea. But it was also agreed that they would have to meet. Initially, it was five years and then reduced to three. You would be a board member for three years.
But because of challenges around funding, PANUSP has not been as effective as it should have been. It stopped in eating the low-hanging fruits at that time, supporting organizations that were just emerging. But then, it didn't go into the long-term goals that all of us envisioned. For instance, members started meeting in smaller groups to elect the leaders of PANUSP. Then, you don't own it as many Africans. Then, it doesn't become kind of a legitimate African entity, because it's only a few members who meet and then decide. In the process, it stayed there, but then, it lost a lot of legitimacy.
I don't know whether you understand what I mean to say.
It lost that legitimacy…
Kasumi Ito
Yes, because the organization becomes small.
Derrick Kizza
Yes, the people, so you can't say that I am representing Africa. But then, you are elected by just a few people.
Kasumi Ito
Yes. It was used kind of a little bit for selfish gain. But at least we had achieved the immediate benefit of starting off smaller groups at the country level, Country Chapter. I told you that the USPK in Kenya, TUSPO in Tanzania, NOUSPR in Rwanda, Mental Health Society of Ghana, which replaced the MIND, also started MHUNZA in Zambia. Some of these groups emerged. Gede in Nigeria. Some of these groups emerged out of the PANUSP, the meeting for PANUSP.
We achieved from the immediate, the low-hanging fruits at that time, but then, we have not been able to oversee the long term. But also, this politics around the PANUSP has also been accelerated by the donors. Especially in the way like the International Disability Alliance, in trying to drag them, drag the PANUSP to achieve their aims because as donors they also have their interests. By saying that we are working with the PANUSP, then they can attract a lot of funding in their docket and in things of their liking.
Kasumi Ito
Did you have a face-to-face Board Member meeting?
Derrick Kizza
With the PANUSP?
Kasumi Ito
Yes.
Derrick Kizza
No.
Kasumi Ito
No.
Derrick Kizza
I think it was very adventurous, but we thought it would have been more. Board meetings have happened, yes, when there is money. When it relies on funding, then it becomes very tricky. It cannot be as consistent.
Kasumi Ito
Okay. Thank you very much. I think there was a General Assembly of Pan African Network in 2011. Did members of Mental Health Uganda participate in that?
Derrick Kizza
I think one attended, one or two people attended. Was that the one in South Africa?
Kasumi Ito
Yes.
Derrick Kizza
Yes.
Kasumi Ito
Also, going back to the activities in Uganda, is there a connection, other organizations of the person with mental illness, mental health condition? I think I heard there is Triumph in Jinja and the My Story Initiative. Is there a connection among these groups?
Derrick Kizza
Yes, we have a coalition.
Kasumi Ito
Coalition.
Derrick Kizza
Yes, we are into the process of now formalizing it. The lawyer is working on the terms of reference for the coalition. This coalition has been brought together by the organization, but by Mental Health Uganda, so Mental Health Uganda is the Secretariat of this coalition. Because they are organizations that work both at national level but also at the local chapters at the district level, local government. It might not necessarily be an organization of people with mental health problems. It might be an organization doing work with people with mental health problems. All of these want them to be part of the coalition.
Kasumi Ito
Okay. Yes, you say that people need not only drugs, but also other support. Is it popular to take drugs in Uganda?
Derrick Kizza
It depends. I think many communities or people in the communities or even people with mental health problems think that there is no life beyond drugs. They want to be on drugs. They think that drugs are an end in themselves, that when you have drugs, then you are sorted. It is a mindset in some members who are taking drugs, they are families, but also, the general public. But I think what has, kind of, sparked off the discussion now is bringing in the human rights movement, because the human rights movement has now opened a can of worms to now start talking about issues like access to justice, issues like information, issues around the torture of people with the mental health problems or other persons with disabilities.
The human rights angle access to other health, other than mental health, because you could be a woman, but then, you need reproductive health services, employment, access to justice, adequate standard of living, social protection, benefit from poverty eradication campaigns, which are very, very, very critical. These have empowered now people to start thinking that, okay, it's not just about drugs. Maybe people can get but also as an organization is that we are not a big fan of institutions, or a big fan of hospital. We want the hospital, but within a community mental health care model.
Because when you have community mental health care, then you have prevention, you have promotion, we have psychosocial support and counseling forums. You have awareness raising in terms of prevention. You have early detection and referral to the hospital. But also, you have the involvement of the family in the treatment and care. We want the hospital within the community, not hospital as a form of isolation, as a form of detention.
Kasumi Ito
Okay. Regarding the treatment, the situation is different among the area, among the village area or rural area or such as town area?
Derrick Kizza
Most of the medication is received at the regional referral hospital. The regional referral hospital is usually in the center of districts. But then, many people with mental health problems do not receive it. You expect them to travel here. What happens is that many stay away, because of the barriers for them to get to the hospitals. They don't have money for transport. Some don't even have money for food. Then, how do they afford money for transport? Sometimes, there are hardships in coming here. Coming from the periphery, from the countryside. But there are also systemic problems here. You come, no doctor. You come, no drugs.
When you see a doctor, but then the doctor says we don't have the drug, so you have to buy. When you come and then probably you don't find a human resource to support you. Or you are just admitted and detained here. Then, the family gets their way. There is kind of a social disconnection from your society environment, but also the family.
What happens?
Then, the people who are here, start to look for options, to stay away from medication. Someone just stays in a relapse mode. They are tied with ropes or locked up in rooms or they start to seek alternative forms of care which also draws them to the traditional healer and herbalist.
Kasumi Ito
Traditional healer and…
Derrick Kizza
Or herbalist.
Kasumi Ito
Herbalist?
Derrick Kizza
Herbalist is the one who gives the local traditional drugs, the herbs.
Kasumi Ito
Herbs, okay.
Derrick Kizza
It's the one using herbs to treat, so someone is using herbs to treat but the traditional healer can also, say, is inviting evil spirit, the spirit to come down and try to interpret the situation at hand.
Kasumi Ito
A traditional healer or herbalist treatment, their treatments are expensive.
Derrick Kizza
No, it's very cheap usually. That's why people go to them. Because here, traditional healers, now recently, many of them have started mixing some of the modern drugs…
Kasumi Ito
Mix?
Derrick Kizza
The drugs ? yes, mixing the herbs with the drugs that you find in hospital. For instance, the drugs on sedation. Do you know sedation?
Kasumi Ito
No.
Derrick Kizza
Sedation is to keep you asleep, to keep you out of action. They mix them with a local herb and then they administer to the patient. But the issue is that the hospital is here, like I showed you, I am staying this way. I am just here. But then, the traditional healer is usually here, is usually based at the neighborhood. You can go by foot.
Secondly is that the traditional healer is not using pharmacy medicine from Japan or China which is kind of expensive. He is using local herbs, which are usually around his or her house. But also, you might not have money, cash to a traditional healer. Then, you say if I treat your son or daughter, you can give me a cock or a hen. It's not just the money, it can be cash or in kind, or you can give local brew, or you can bring a harvest of maize, so in exchange for his harvest. But the biggest issue is access, they are accessible, the hospital is not accessible.
Kasumi Ito
The number of the local healers is much more than hospital doctor.
Derrick Kizza
It's not necessarily just being much. They could be much, but the difference is that they are more accessible. The terms of engagement are soft, compared to where you have to incur costs coming here. Then, you come here and then there are no drugs, or there are no doctors, or both.
Kasumi Ito
Is it popular to use rope or shackling or something like that?
Derrick Kizza
Is it what?
Kasumi Ito
Is it popular, usually, to use rope or shackling or cage?
Derrick Kizza
Oh, it is popular, especially for families that are having the first episode. They have never seen their relative behave this way. Shackling or ropes is usually the first means of bringing the person calm, either to keep the person in home, or even transporting the person to hospital. They usually bring them when they have tied them. It is very common in families that are having it as first episode. But you can also find it in families that have said that they have been engaging in these episodes over time.
Kasumi Ito
Okay. Is there some solution to end such a…?
Derrick Kizza
I think the biggest solution, the reason why these people face a lot of problems, it is usually because of what people do not know about mental health. People act out of ignorance and prejudice, because they know nothing. The see tying patients as a form of treatment. Awareness is a very important in addressing this stigma towards mental illness. You need awareness, both in the community who usually react in a hostile way. But also, awareness for the family in how do you take care of this patient. What happens? What should you do, especially when you start to detect that trouble is coming?
Many families do not have that information and yet it's very important. Keep calm. Ensure the patient that you are trying to work on a solution out. These are some. Families, they still act violently. They act aggressive. They become aggressive that you need to encounter the situation head on, which is usually a very big problem.
Kasumi Ito
Yes. What do you do in Mental Health Uganda to raise awareness?
Derrick Kizza
We use radio.
Kasumi Ito
Radio?
Derrick Kizza
Yes, a lot of radio, we have radio programs. We use TV. We write in newspapers. We call press conferences. We also use our formalized channels of communication on the website. We have a Twitter page. We have Instagram. We are on Facebook. We write also press statements. We also react. When there is a national violation of human right, we react in the press.
We are also having a lawyer now, so we can do litigation. Do you know litigation? Going to court to make sure that the person with mental health problem gets justice. We also have a model called social contact. Social contact is when a person with a mental health problem sits down to open up a conversation with a person without mental health issue. The issue is to address the stigma, those social barriers, the prejudice that many people in the communities have on mental health and people with mental health issues.
Kasumi Ito
The media, like radio, TV, or newspaper, are very welcome, very acceptive of your…
Derrick Kizza
Yes, it has taken time. It has not been a smooth ride. Many people think that mental health is just medicine. People ask what are you here to talk about other than medicine. For them, the thinking is that when you have medicine, all is well. Some people think that people with mental health problems cannot work, that when they work, they will set the building on fire, they will do crazy things, companies will lose money, they will be victims of accidents. Those prejudice, those kinds of stereotypes, those falsehoods have been a big barrier. That's the same depiction that has been in the media for a long time. But gradually, they are changing.
I think the biggest advancement has been after the COVID-19. We have now many people with a lot of mental health issues, and then they needed support.
Kasumi Ito
Also, there is an option to go to court. Is it illegal to use rope or to use cage to put people in cage?
Derrick Kizza
It is illegal, but then people use it as a desperate measure. Sometimes, they say the person was fighting, he was breaking up windows, he was beating up people. Now, the general perception is that the person is a danger to the society, to himself and everybody around the person. Then, they use it as a stopgap measure to have the person come to hospital or to control the person from causing more harm or damage, both to himself and for those people around him.
Kasumi Ito
When you go to court for litigation, what can you do?
Derrick Kizza
Because when you go to court for litigation, first of all, the person who is a victim can get justice or compensation. But also, secondly, it increases awareness because when there is a running court case, then people are reading about it, people are hearing that there is an impending case. It triggers people's attention towards issues. But also, people learn that actually it is wrong to beat up a person, to violate a human right, to assault a person with mental health issue. There are instances when you can lose a court case, however, it has a lot of benefits. It's like losing a battle. But then, you win a war.
Let me tell you an example.
We took Butabika…
Kasumi Ito
Butabika Hospital…
Derrick Kizza
The hospital to court on issues of seclusion. Seclusion are the side rooms where you have to lock up people when they are very violent. We said that they violated human rights. You enter there when you are naked. When you don't have a toilet there. Some people don't check on you. Because then you can go the whole day without food, blah-blah-blah-blah. The judge said that, for Butabika to be putting people inside rooms, for this patient, they need it for the best interest of the patient. Can you imagine a ridiculous judgment like that?
Kasumi Ito
Yes.
Derrick Kizza
For me, it's two sides. It shows that the judge does not understand the social context of the victim beyond the law.He doesn't understand the social momentum, the social aspects around legislation. He doesn't understand that even when it's in the best interest of the patient, it's first that the person is a human being. This is not an animal that you can't talk. He is not a goat or a pig or whatever that you can't have a conversation with. The judge is not aware. He was trained in law, but then he doesn't understand the social dynamics. But what happened is that ? so the judge said no, I think. It was in their best interest.
What happened is that the Butabika Hospital started working on regulations on seclusion. They said that when a person is in the room, there should be check out, there should be check on the person, after this kind of event. When the person is there, he should be given this, he should be given this, he should be given this. People must sign up that they have checked on the patient at this time. These are the needs. I have been able to do this and this and this. We lost the battle in the court. But then, Butabika started working on what we wanted them to do initially. You lose a battle, but then you win a war.
Kasumi Ito
Okay. When the litigation happened? When was the litigation - court battle?
Derrick Kizza
It was here in Kampala.
Kasumi Ito
When? In which year?
Derrick Kizza
I think it was 2019.
Kasumi Ito
Is it expensive to go to court?
Derrick Kizza
Yes, you have to have a lawyer.
Kasumi Ito
Yes. You have to…
Derrick Kizza
You have to submit. I think expensive is relative word. You have to facilitate a lawyer who works back and forth tracking on how far the court has gone? whether the court has gazetted a day for hearing. Following up all this time, but also transporting the witnesses, there could be a cost there. You might also have to provide psychosocial support counseling to the patient who is a witness in the court case. They need to stay in very good mental health on medication otherwise, then you can lose a court case based on that when the patient is not able to appear in the court anymore. Also if it's a longer process, then you need to endure the lengthy court process and also prepare the patient and other witnesses for all this.
Kasumi Ito
Yes. I think a patient cannot pay for lawyer or…
Derrick Kizza
No, often in many cases most of the patients are not in position to pay for legal services. There should be someone paying for these costs.
Kasumi Ito
Yes.
Derrick Kizza
The issue is not sometimes to win the court case, but to reawaken people who hold the power that you can be taken to court and held liable. Also, that such cases can come and appear in the court of law. They can be heard and then disposed of because some people don't think it can be, it can happen. Then, now people see it happen.
Kasumi Ito
Okay.
Derrick Kizza
Yes. Are we still going on for too long?