I Kissed the Devil & Found Myself at Mathari PT 2 #HumanRights

Here is the link to part 1 ... the devil is in part 1: https://charitymuturi.wixsite.com/read/post/ikissedthedevilfoundmyselfatmathari

My story? Not quite. No one can possibly have one story. We are pieces of stories… of love or hate… fun or fear… abundance or lack… truth or pretence… hope or despair... broken dreams or unexpected blessing. This today... is the story of my mind. The clash in what I see in Mathari Hospital against the glorified mental health conversations I hear outside it especially on matters rights. There have been tremendous changes in the last two years. The current leadership have been very receptive to challenge or suggestions and have been working on all the issues raised here. Some have been addressed fully and some in the process since some functions are still not directly under the hospital’s autonomy.

The next story will actually be of a fresh minji minji patient of Mathari which will capture the mzuri mzuri things we enjoy today. How though, will we truly appreciate the joys of present or know what future to anticipate if we do not understand the pains of the past? Views shared here are my own and do not represent Mathari as an institution or its users. Now... put on your seatbelt as we delve into my long roller-coaster of disillusionment.

I have volunteered with various prison programs since 2012, so my very first time in Mathari was actually in 2014 at the Maximum Security Unit (MSU) which hosts psychiatric patients in conflict with the law. They shared horryfying stories of their cases being stuck indefinitely. In 2018 I was finally allowed to volunteer at Mathari MSU every Tuesday, which was not easy due to the sensitivity of their cases. Their stay on Presidential Pleasure was declared unconstitutional and we have gone round in circles since. We have worked with Disability Lawyer Felicia Mburu to every office in the criminal justice system - meetings, public participation, court processes and petitions to the Cabinet Secretary, Power of Mercy Committee, National Council on Administration of Justice etc... severally. Last week I was at Makadara Law Courts following up, but this painful journey continues.

Sadly, some cases have been stuck for 30+ years. Since 2018 we have done over 100 group therapy sessions & trainings on mental health, disability rights, life skills, entrepreneurship and production of fast moving consumer goods; to prepare them for release with the Probation & Aftercare Liaison office at Mathari. I have seen our people get consistently demoralized, lose hope and sometimes relapse due to delayed justice. The good book says hope delayed dries our bones. So my greatest disillusionment is that being declared ‘guilty but insane’ in Kenya... is a never-ending nightmare.

In 2015 when I was diagnosed, I had been retrenched, but with a new private insurance cover. I had access to quality diagnostics and time with the doctor. She said in only five days I would feel the drugs lifting off the depressive phase of bipolar and I did. During admission in a posh psychiatric facility we had day schedules of therapy and assignments, physical & mental activities. We enjoyed nice ambience with modern furniture, paintings and polished wooden floorboards. Lovely greens with flowers and manicured gardens in the comfort of our own clothes. Patient conversations were mixed with missing netflix, malls, golf and fine dining.

We could wake up for a midnight snack left by the chef. Wueh! Aki the appetite triggered by some of these medicines can make you finish the leg of a grown elephant to the bone, before it is half cooked. After discharge I accessed medication for only four months before the cover ran out. Being on and off medication, without income & family financial struggles in managing my parents’ 6 Non-Communicable Diseases, I ultimately ended up in Mathari.

There was a big difference in medication. The initial injection made my head and body feel heavy and like a zombie. My family brought tablets as they visited because the hospital had none at the time. They were cheaper but I did not quite feel the effect of the drugs even three months later. Then my people at Mathari Maximum told me ‘Mwalimu tunaona kuna kamtu kanakuja. Tutashona sweater’. I was already used to being congratulated for pregnancies due to sudden weight gain. However, they were the first to notice to my swollen feet. I was sent for a test at Kenyatta which confirmed my kidneys were affected by one drug; fortunately with reversible damage.

I learned painfully that 1st generation drugs, some almost as old as the hospital are very cheap but with adverse side effects. In private care the 2nd generation drugs were costly but much more effective. Over time I have settled on a combination of a cheaper 2nd generation and a 1st generation drug. I initially used to trip a lot and sometimes fall which stopped in three months. The remaining side effect is that my mind is usually foggy and I tend to be irritable or repetitive before 10 am. So I request for meetings after 10 and take meds earlier when unavoidable.

We realised in our peer support groups that the greatest reason for non-compliance of treatment is the side effect of drugs. So we encourage patients to speak about it, to be patient and seek a change of prescription where necessary. Most importantly to find a combination with least side effects that is financially sustainable in the long term. Sometimes patients do well on 2nd generation drugs covered by NHIF on inpatient, but struggle to afford them after discharge. Some take years to find a good combination.

I have also provided peer support to over 30 families through their treatment journey at Mathari and encourage them to discuss sustainably affordable medication with the doctor as soon as possible. The longer term solution is economically empowering patients and for NHIF outpatient cover to be increased beyond the meagre 100bob a month. Additionally, to address many pending bills and the quarterly institutional cap that limits to less than half the actual claims refunded back to the hospital, leading to more out of pocket costs. The hospital is addressing these issues with NHIF.

During admissions at Mathari I had a lot of time to think. I remembered how inspired I was to change this country’s mental health by upgrading all Kenyans to afford what I saw at the private hospital. I attended many policy meetings, learnt rights language with those examples, learned relevant laws including all 30+ articles of the UN Convention of the Rights of Persons with Disabilities (UNCRPD) that Kenya ratified & adopted in our Disability Act, which qualifies mental health conditions as psychosocial disabilities.

All the rights we have as mental health patients. The right to highest attainable standard of health, access to information, liberty & security of the person, freedom from inhuman or degrading treatment, participation in culture, sports & recreation etc. How all these things had sounded like basic common sense at the time, because I had access to them. Yet with each moment I experienced at Mathari I felt further and further away from these now alien rights, principles and ideals.

I saw that the sleeping on the floor was due to overcrowding. The real capacity of our ward was 80, with 2 wards of 40 bed capacity each but one was a rarely opened store. Some patients came tied with ropes while some guards hurt them badly when trying to contain them. Most patients did not come in voluntarily. Violent patients were locked in a seclusion room with no window, sometimes without a carton mattress, blanket or bucket.

I knew that people with mental illness are rarely violent having lived with with a few and seeing others homeless living peacefully on the same street for years. So I never felt afraid of being in a mental institution. Thanks to KPA Chair Dr. Chitayi, I now know that even scientifically out of all violent offences, only 5-10% are by persons with schizophrenia -considered to have a higher likelihood of violence when untreated for a long time.

Many patients were finally brought to Mathari after failed spiritual and traditional interventions for 10-30 years. Thus the level of isolation, agitation and violence I witnessed was so much higher than at the private hospital. The level of illiteracy was high and things like therapy or support groups were not a priority to most families I talked to. I therefore realised that the solutions I had seen in private facilities and Western solutions on google, were pretty much irrelevant to public facilities.

I noticed behaviour change in one of my friends *Njoki, a warm, friendly lady with many ridiculous stories of life in Kangemi. She became irritable, then vulgar in speech and action. The harder we tried the harder it was to reason with her. Then she started running fast from something in her mind and became violent towards it. Whether she was seeing a snake or lion it was very real in her mind and her adrenaline gave her the strength of 10 soldiers. I felt afraid. We all did. We also needed to protect her from herself and from patients asleep; physically weak from the stopper or illness. The nurses struggled to put her into the seclusion room so they called the guard at the gate. When I remembered the wounds *Mwikali was still nursing I quickly called chap chap patients. We helped the nurses push her in and lock the metal door. Yaani half our adrenaline had to kick in to save the day.

After our heartbeats settled, I realised we had facilitated a gross human rights violation and it was not out of hate or ignorance. We had used what was within our resources in a crisis. Accepting the painful reality that I could be next in the same cold, dark room the next day or hour. That I would hardly fault the nurses who I had never seen do anything unreasonable. That despite their knowledge & expertise they have seen colleagues end up in wheelchairs in similar moments. That the small bodied guard was expected to preserve safety with his security company training to immobilize thieves. While his physical strength is no match for psychosis. So he would hurt before he was immobilised and dismissed from work in a day.

It then made sense why Njeri's family had initially brought her in ropes. A parent does not derive joy from tying their child with ropes or chains… even though there are exceptions in a broken world. That her violence was originally as a result of delayed treatment for almost 20 years after her first known symptoms. Unknown to us she had also stopped taking her medication in the last few days. The occupational therapist selected a few chap chap patients to go to the field once a week because they could not manage all 80 of us or even 10 agitated patients. That the doctor had less time with each patient due to the long waiting lines.

What we had all done was basic common sense because self-preservation is an automatic… primal human instinct. I tried to remember anything from google, mental health trainings or policy meetings that had prepared me for that moment. I realised I had learned a lot on what not to do... but not what T.O. D.O. I knew the relevant human rights but did not have a practical A.L.T.E.R.N.A.T.I.V.E. to the seclusion room for that level of violence and in that moment. I understood then why it was considered a solution in the first place. While it was not my decision to make, protecting another patient... and friend from possible harm by the guard was important to me.

I was in a meeting where civil society were up in arms that the Task Force Report focused on new buildings instead of community mental health. That no building is necessary. I left the room and cried bitterly. I remembered how one night I was woken by patients shouting to the nurse to open the ward because a patient had a fever. I had seen the nurses open in a calmer crisis. However the noise was unbearable with many patients banging the door and walls. The nurses tried to verbally calm us down. Some of us tried. Nurses could not assess the situation from within the ward compound because the windows were on the back side and they would need a ladder to reach the sills. (This last sentence is a result of a mixed memory following ECT, 2 years later I am unable to fully recollect the memory but will continue wo leave it as is, since many have read it already.)

I was actually worried about what could happen if they opened, with the increasing irrational behaviour. I imagined the possibility of a stampede at the door or of patients jumping over the very low ward entrance in the dead of the night with only two nurses and one guard. Yet renovating the wall inside the ward to have bars and thick windows to help them monitor patients was impossible because the building was weak at 100 years old. Probably one of the Mathari buildings condemned from human habitation by the Ministry of Works.

Are these things wrong? By all means YES! Who is to blame? I dare say... all of us. Our world, our continent, our government, our civil society, our religious and social institutions, our rural and urban communities, you and me. Why? For a century we have neglected mental health in Africa... in Kenya and these are the consequences. Western countries impose human rights guidelines to be met by the whole world in 5-10 years with repercussions for countries that do not commit. This is regardless of the lack of financial and technical capacity needed to bridge the gap for low & middle income countries including Kenya. Donors mostly approve more westernised solutions even as they ask us to contextualise locally. Choosing the familiar, while more realistic divergent views are silenced with disapproval.

For years we have had posh conversations to dignify mental health. However in the process we have over-sanitised it by failing to acknowledge the tougher realities of mental illnesses and the impact to our families & communities. While advocacy has increased, when mental health issues hit home, I get surprised by how #itsoknottobeok disappears, even for well educated families. We have a long way to go in actual behaviour change.

Kenyans countywide reported to the Task Force that our mental health infrastructure is a key driver of stigma. For me, providing decent infrastructure is retributive & restorative justice. A public acknowledgement of gross social and health injustices to us, to those before us and an attempt to right it. While we have accepted the deplorable facilities this country has given us, we deserve better. I acknowledge the tremendous efforts behind the recent ground-breaking for the new facility in Ngong. Yet still hope upon hope that the current Mathari, especially newer buildings will remain as a Nairobi County mental health facility. That what we call our State House remains while our UN is built, with reasonable county mental health infrastructure within existing health facilities.

The sad reality is that in the last 30 years, worsened by election seasons and a pandemic etc, mental illnesses have increased in number and severity. We cannot wish them away or sweep them under a carpet. They exist. As a result of our late interventions they will need psychiatric and where necessary with physical healthcare needs including my Maasai ward mate in part 1. Families will need social protection and community support to care for them because psychiatry is not a magic wand that resets minds to factory setting. Some symptoms are fully managed, some reduce and some remain.

Am I against community health? NO. Interestingly my first chosen area of training is Community Health & Development. I have lobbied for and engaged in various community mental health programs in health centres including in Makueni this week and in Kiambu next week. Even in successful community based services, there are those needing hospitalisation. Institutionalisation can and has been abused by health & family caregivers globally. However as we actively work towards reducing it, a healthy balance should progressively and sustainably achieve the ideal of community health.

I say with full confidence and without fear or favour that our Ministry of Health, specifically our Directorate of Mental Health is extremely committed to upholding human rights. They led a human rights audit of facilities countrywide and have recently conducted the WHO Quality Rights (UNCRPD) training for Mathari and some county staff. The Ministry’s push for the semi-autonomy of Mathari and all the changes happening are towards human rights compliance. The hospital now has female guards for female wards and working towards training all guards and negotiating longer contracts to avoid frequent transfers after training.

There is still a lot to be done. We have 14 poorly resourced inpatient facilities across the country and another 33 counties without mental health units. Fortunately, the new Mental Health Act guides county mental health investment with more focus on prevention and outpatient community mental health thro' primary healthcare, contextuallised to each county's needs.

The Task Force on Mental Health Report, Kenya Mental Health Policy, Action Plan, brand new Mental Health Act & Investment Case are founded on the bedrock of human rights. I greatly applaud everyone who participated in these efforts. We need to bridge our national and county resource gaps with realistic transitional plans, alternative tools and processes. Every right comes with a huge responsibility of goodwill, time, human & financial resources. Human comes before rights. So as we prioritise patients, let us support both family & professional health caregivers in enforcing them.

While rights are for all Kenyans, we need to defend the poor first as the rest can afford alternatives. I fully agree with Dr. Irungu Houghton, Director Amnesty International that ‘we cannot copy paste private solutions to public problems’. Thus, patients and staff of public facilities should be prioritised and meaningfully involved in strategy, implementation, monitoring & evaluation. With policies now in place, I challenge each of us to step up to enforce the practice... which is by far, a greater feat.

Thank you for taking time to read this. Due to length these are only half the thoughts I intended to share, but will continue to in future posts. Don’t you dare miss our next story, Mathari minji minji... Mathari mali safi! However if you continue not leaving likes, unlikes or comments… and not subscribing; Mathari bale mpya will be full of nusu nusu sentences mjijazie. Sasawa? So dear reader, what are your thoughts on this story?