When we think of health system strengthening at Partners In Health (PIH), we always refer to five key elements: staff, stuff, space, systems, and social support.
https://www.pih.org/article/pihs-five-ss-essential-elements-strong-health-systems
I didn’t want to recall our visit to SL and the PIH sites as a list or a day by day journal. For me, this trip was about accompaniment with those working and being served by PIH Sierra Leone but also with my eldest son in his first in-person experience of accompaniment. I thought I’d steal their own organizing system of the 5 S’s, though I’ve added a sixth. Under each one, I’ve recalled the ways in which I witnessed it. Take the one at a time over some days or have a go all at once, but I’d be very grateful if you accompanied me in this space, through this experience.
Spaces – the Wellbody Clinic
Lately when I think about spaces I think about liminality, of being on the boundary or the threshold of a new experience while leaving something else behind. My eldest is newly a teenager, his boyhood fading away. My youngest is in his last year of primary/elementary school and we are trying to choose where he will go next despite it not being entirely up to us.. They’re common experiences. Some small, like changing school, some much bigger, like experiencing the death of someone close to you.
At the Wellbody Clinic, founded by Dr Barrie in Kono, far eastern SL, there are the very literal waiting areas for patients. People start arriving at four in the morning, the queue opens at five. There’s a first waiting area with a sink for handwashing that flows into another where information about your visit is taken and numbers are given out. Next you go into a queue for triage if your issue requires assessment. Or to the lab. Or the pharmacy. There is also a small maternity unit for waiting to give birth. Further back, away from the queues, are three buildings that serve pregnant women who are high risk and need daily monitoring. If there was an instrument that measured liminality like a geiger counter or a metal detector, it would probably short circuit from the volume of its readings around Wellbody.
Obviously, most medical facilities are places of waiting to move on to another stage in life. Waiting to become a parent, to become a short term or long term patient based on the result of a lab test or a scan. Waiting to know if something more devastating is happening inside your body or the body of someone you care about.
But if you are waiting at Wellbody, you know one thing that a lot of other people in liminal spaces don’t know. The Brits have a great turn of phrase: it does what it says on the tin. That’s the amazing thing about Wellbody, about Partners in Health as whole really. Come inside and the people here will do everything in their power to make your body well. If that means medicine, you’ll get it; even if you can’t afford it. If it means a test, they’ll find a way to get that test done. If it means you need food and water to take your life saving medicine, they’ll make sure that happens. If it means you need mental health support too, you’ll receive it. The list is exhaustive because the motto is, ‘We are a house of Yes.’
I know all this because literally every person we met told us about some way in which they support their patients outside of ticking boxes on a form or a diagnosis. We saw all the medicines in stock. The testing machines at the ready. Beds waiting for expectant mothers. The social workers in discussion and preparation. The midwives bouncing on their heels, ready to receive a person in labor.
Wellbody wasn’t started as a PIH facility, but it was founded with the same philosophy. Which is one of many reasons Dr Paul Farmer and PIH engaged with it and Dr Barrie so seamlessly. And that philosophy almost takes the in-between of the space away. Or perhaps the extremities of it. A patient may be between life and death or something far less frightening. But the space is there – inviting, well stocked, well equipped, well supported (yes, those other Ss!) – to hold them with respect and care as they travel through the clinic to the next space where, if it’s at all possible, they will be well.
Systems – Let Me Believe It
Let’s talk in brief about the system by which a patient receives treatment for an illness in the Global North.
Patients go to a medical provider with a complaint or concern. They are, usually, heard and tested or evaluated, either there or at a nearby specialized place. They might require further testing, which they can get either through a government or private provider or they put up a Go-Fund-Me, the universal health provider of America, to raise funds to get the necessary testing. If they are in need of treatment, the same options are available for getting it and are frequently successful in bringing about a cure (I’m setting aside health care debt issues in America and waiting times in the UK for the sake of our sanity)
John Green, in this video, contrasts the survival rates for treated and untreated Hodgkins Lymphoma. He talks about Mondeh Mansaray’s long journey from misdiagnosis to being seen by a PIH doctor to treatment and remission. John communicates Mondeh’s story so beautifully, but he leaves out something I think is really important in favor of keeping the narrative completely positive. PIH didn’t have to send Mondeh and his father from Freetown, Sierra Leone to their cancer treatment center in Rwanda.
When PIH talks about Systems, they’re often imagining that pipeline I described above; the typical experience in the Global North which should, and would that PIH were in charge, be the norm everywhere. But the system I see when I hear Mondeh’s story is the system of not giving up. It’s not an accident. It’s a system that is built into PIH.
Mondeh’s father said ‘Let me believe’ across his son’s treatment journey whenever anyone challenged his belief that his son would recover. Dr Paul Farmer’s criticism of the way the world treats poor people was that they failed to imagine a better future. Partners in Health don’t just believe in and imagine better. They make it happen, full stop. When a patient like Monedeh comes to start cancer care in Freetown and then needs more than Sierra Leone’s facilities can provide, another organization would say to themselves – if we send this person abroad to get the care they need, we’ll have to send everyone. Can we afford that? Is one life the best use of funds that could go to many later? Partners in Health says – if we can save the life of the person in front of us seeking aid and we don’t do it, we aren’t just failing to imagine a better future, we are failing in our humanity and our duty of care. So they do it. Injustice has a cure, but it takes more than imagination. It needs action.
Staff – In Small Things there is Everything
I could honestly and effusively speak about every single person we met, every person who helped and guided us the moment we decided to make the journey. But to avoid a TLDR situation I will describe, in brief, three people who unknowingly made a personal impact on me. One was Hawa Baryoh, a quality control manager at the Maternal Centre of Excellence (MCOE) construction site. When we arrived at the MCOE and sat at a table to talk over what’s been going on, Hawa brought out the blueprints and explained to my son and I how much more (yay!) space there would be. That was my kid’s first interaction with blueprints and later with a building site. It was a Black woman who showed him all that. My husband is an electrical engineer and I often feel I’m falling down on making sure my sons know that women can do this stuff too because it is not at all my forte. Hawa illustrated the reality brilliantly because as much as Isata Dumbuya and Dr Barrie told my son he should be a doctor, he’s far more likely to be an engineer of some kind!
The other two staff who unknowingly made significant contributions to my experience personally are Christmas Konomaymi, our driver during the trip, and Sabrina Hassan, who came with us and works for PIH at the SL Psychiatric Teaching Hospital. Christmas is from Kono and from Koidu specifically. We didn’t have a lot of conversations because he had an important job that I didn’t want to distract him from, but I observed him a lot. He brought me a lot of joy as went around because he knew someone everywhere we went. In Koidu especially, he told us about where we were and greeted friends and family alike as we went. It reminded me of the feeling of going home, of being welcomed. I don’t live where I grew up and when I go home, I love being greeted in places I rarely get to visit. Greetings are important in Sierra Leone. Sabrina told me this at the SLPTH just after my son and I were introduced to a room full of current (just one) and future (at least six!) psychiatrists. As it was our first first visit anywhere, it took me some time to warm up to that idea, in part because we were being led around and spoken to as we went. The people we witnessed were always introduced, but we didn’t always get the chance to say for ourselves who we were. But every time I introduced myself to someone their demeanor changed. They went from a sketch outline to technicolor live action human, usually a very proud person, doing a job they enjoy. I kept trying to make myself do it everywhere we went with more or less success. I’m grateful to Christmas and Sabrina for the cultural lessons and the feeling of welcome I felt in return.
Social Supports
My youngest child is autistic. That’s one reason our Sierra Leone visit wasn’t a full family trip. Without seeing it and experiencing it myself, I couldn’t prepare him for such a journey. Therefore, I was naturally very interested in the child service unit of the Psychiatric Teaching Hospital. In the UK, young people’s mental health is handled by CAMHS (Child Adolescent Mental Health Services), so when I saw a poster in the unit with the same letters and meaning, I was taken aback for a moment in that way privilege people often are when they see their life mirrored unexpectedly in a place where ours bias tells us that’s less likely.
In the unit, we met four mental health workers. They were gathered around child sized tables like I’m used to seeing my elementary school teacher friends sitting at, looking at files, typing into a laptop, discussing their patients. Sheriff, our guide, and Dr Barrie told us who they were and what the unit does. One of the women came forward and described their week by listing each day with a task or theme, such as occupational therapy on Fridays.
This was our first site visit and I wasn’t confident in my part as a visitor, so I had a million questions for them that I didn’t ask. But I did manage to articulate one. I asked what their favorite day was. Their posture changed, their smiles grew. It was an easy and immediate answer. Wednesday. The day they say see their patients. Perfect answer.
But why is this description under social supports? Well, because mental health issues almost always bring a friend. It can be a friend like dual diagnosis, for example, people who are autistic often have an additional learning difficulty like dyspraxia or ADHD. It can be something more difficult to disentangle like depression and drug addiction. I’m sure this is why PIH, in addition to Community Health Workers, also has Community Mental Health Workers. It’s also why the workers at SLPTH love the day they see their patients. Not just for treatment purposes or handing out a prescription. A day where you can do the real work of mental health professionals, supporting your patients by seeing them in person, like social creatures we all at our core.
Stuff – Here are the Tests
I don’t want this to sound like a complaint, but people could not stop telling us about their stuff. Every lab tech and pharmacist. Every community and social worker. I am not a medical professional and half of these things were just words that I didn’t understand, but my goodness were they happy about the stuff they’ve got.
One way to look at that is to assume it’s because people wanted to let me know that donor money is well spent. There are probably donors out there who need and want that reassurance, perhaps because they’ve had bad experiences in the past or their unconscious bias is telling them they need to check up on any resources shared with poor people.
There is however one form of stuff that I was and remain interested in and that’s the multidrug-resistant tuberculosis (MDRTB) tests and the machine that uses them. Some readers of this will be well aware of the #TimeFor5 campaign to get the cost of these tests reduced to $5 per test from $15 per test, which is, depending on whom you ask, somewhere between a 300%-500% profit .
These tests are the difference between following a treatment plan that will cure your TB and one that can ravage your body while the TB you have is still killing you. Over a million and half people needlessly die from TB every year solely because of lack of access to the right tests and medication. By ‘access’ I don’t mean transportation or the ability of a medical facility to handle the tests nor do I mean that not enough tests exist. The resources physically exist. They simply aren’t available to everyone who needs them because a pharmaceutical company decided that the poor people of the world were the right folks to squeeze knowing they don’t have many voices to fight for them.
If you don’t know about it, it’s because most of your exposure, no pun intended, to TB as an illness probably comes from historical fiction and you, like many, think of TB as a disease of the past and/or something that affects only a small handful of people in tiny, isolated places. Let me point out that a ‘population’ of 1.6 million dead is far from small and that the vast majority of cases occur within a day’s transport of an international airport.
The most recent successes in getting test and drug prices reduced have come from social pressure in the form of tweets, letters to representatives, and direct contact with the companies themselves to let them know that gross profiteering off the lives of vulnerable people is unacceptable. See the TBFighters for more information or look to Doctors without Borders or PIH .
Same
My journey home to England began on an overnight flight to Paris and after a busy week, I went to sleep quickly if not for very long. When I woke up, various parts of my body had fallen asleep and were painfully reminding me to lean the other way in my seat. I shifted and let my mind drift.
I’m one of those people who thinks a lot in images, like a movie running in my head. I wanted to remind myself of what I’d seen at the MCOE site so I could solidify it and be able to report to the wider Nerdfighter community as well as my friends and family who’ve become regular donors (and vocal supporters even if they lack the funds). I recalled walking into the South Ward and seeing the nearly complete nurses station in the center of the first room. At that moment, I gasped because I could see the virtual fly-through that Build Health International had shared two years ago lay itself over to blend with the reality in front of me. On the plane, in my semi-dreaming state, that image became more real. I could see the room complete with beds and those plastic sided baby cots. Then I could see Sierra Leonean people and babies in those beds with nurses moving around them.
Suddenly, I started to cry, something I had not done all week during any facility visit despite thinking I would. I was crying because it looked the same as the ward my sons and I were on in America. It looked the same as the ones where I visited my sister-in-law in England. The same. It should look the same. The women of Kono, of greater Sierra Leone, of every place in the world regardless of poverty, deserve no less.
Dr Barrie told us, and we heard it from others too, that Dr Paul Farmer wanted this same-ness. He wanted the hospitals serving the poor to be beautiful because why should the poor be in a stark, barren or ugly environment just because they are poor. He wanted the staff and the stuff, particularly the medicines and treatments, to be the same. Everyone at Partners in Health wants the systems and the social supports to be the same, and in some cases better when you compare them to a for-profit system. People in poverty do not deserve less because they are poor. No one deserves less than total access to the human right of full and complete medical care.
I want to return to the MCOE at some point, either when it’s complete or not long thereafter, so I can see my vision from the plane in reality. They better have some tissues handy.
C J Gold 