Building bridges to care: Patient Coordinator Clement Ofosuhemeng
Patient Coordinator Clement talks about Operation Smile Ghana’s vital work to find patients in remote areas and challenge deep-rooted stigma about cleft conditions.
Clement Ofosuhemeng is a much-loved member of the team in Operation Smile Ghana. And, when you meet him for the first time, it’s easy to see why he’s held in high esteem by Operation Smile colleagues around the world too.
A softly spoken man, Clement becomes deeply animated when he talks about his work as a patient coordinator. When he recalls the children and adults whose lives he has touched over the years, you can both see and feel his emotions. In fact, it’s almost impossible not to be moved by his passion to help others.
Clement’s been involved with Operation Smile since 2015. He heads up the patient awareness team in Ghana, whose role it is to find patients living in remote areas. Stigma about cleft conditions runs deep in many Ghanian communities, so working to raise awareness about cleft conditions is key. It’s also vital to teach people that a cleft is treatable and not the result of supernatural causes.
It’s no exaggeration to say that Clement is a lifeline to countless patients and their families. His kindness breaks barriers and builds bridges in communities where families are living in fear. His voice is often the first one they hear, telling them they don’t need to be afraid anymore. He tells families they don’t have to be ashamed. He reassures worried parents they are not alone and that their child’s cleft condition is treatable. He also tells people living with cleft conditions that they no longer have to hide, and that there’s a team of people waiting to help them. He says:
My role is to make sure we find the patient irrespective of where they are and also explain to them what their needs are in terms of the service that we offer, counsel them, because some of them, they are so isolated, rejected, they don’t have the confidence that you and I have to come to public places.
It’s heartbreaking for Clement when he meets someone living with the burden of an untreated cleft. A child unable to go to school because of bullying, or an adult who’s lived a half-life after being branded an outcast in their community. But, this is Clements drive to work harder and go further so he can reach more people, he says:
“I feel bad, especially when I know that there is opportunity for them. Then they tell you that they didn’t even know that it’s possible for their cleft to be fixed. That’s where my feeling gets more emotional, because it means that whatever you’re doing is not enough. You need to go that extra mile, because if the need is there and Operation Smile is here to take care of them and they don’t know, then it’s a problem. That’s why I say, whatever you do, you need to go that extra mile. Don’t stop.” Building trust with people who have been shunned by their communities – and sometimes even their own families – is a gradual process. It takes time, but Clement is well used to challenging the misconceptions that surround cleft conditions. He shows them photos of patients who’ve had surgery and explains a typical path to treatment with Operation Smile.
I take them through the procedure and explain that: ‘Yes, it is a condition, but there is an opportunity for you and it can be fixed by Operation Smile Ghana. Yes, you don’t have the money for the surgery, but Operation Smile Ghana is here to take care of that for you. Yes, you don’t have the means to foot the bill to travel, Operation Smile will provide that means for you.’ You get to know what the mindset of the caregiver is and then you can design your communication to them. The bottom line is to build trust. Once you’re able to build that trust we can say, ‘Yes, your people are turning their back on you because of the condition, but we are here to help you. Believe in what I’m telling you. The doctors, they are there, and we are ready to solve that problem for you.
Clement sees firsthand the stigma associated with cleft conditions in some of the remote villages he visits. Here he explains it’s hard to find a patient with a cleft, not because there aren’t any, but because often they’re kept hidden for their own protection:
“I’ve been through all the regions in Ghana, most villages. I can tell you it is very rare that you come across a patient with a cleft condition. You are likely to think that they are not there, but I’m telling you, they are there. It means that they are so good at hiding them. Why are they hiding them? They are hiding them because they know what people will say when they come across the child.
“Sometimes when you are out there and you show them posters, the way people react when they see the posters shows what they will do when they see a patient having that condition. The negative energies that you get when you are even holding a cleft poster and showing it to people will express how they will react when they see someone with a cleft.”
Clement explains it’s common for family members to reject children born with cleft conditions. Fathers leave because of the shame. Mothers are told to abandon or harm their children. Other relatives blame spirits or gods, or sometimes the child’s mother.
“If the immediate family members who are supposed to show you love are turning their back on you, it’s a problem. Stigma is such a big issue in Ghana.”
But Clement tells us Operation Smile Ghana is fighting back. Awareness campaigns are reaching wider supported by TV and social media coverage, as well as training local health teams: “We are training more health personnel, who are already travelling all over the country to remote areas, like health promotion officers. Certainly, once they are being trained by Operation Smile and they identify a patient with a cleft condition, they’ll be able to refer them to us. The health system strengthening is really working well as we now engage with several stakeholders, bringing them on board to help us spread the message. That means that when you go on the grounds, at least we hear people talking about Operation Smile, they’ve heard about Operation Smile or seen someone who’s had surgery so it means that at least we are spreading the message.”
Patient advocates are also playing a big part in raising awareness in Ghana, and Clement is supported by more than 25 of them, extending his reach further. These invaluable volunteers are often parents or relatives of patients who’ve had surgery from Operation Smile. They’ve been so moved by the impact of cleft surgery on their loved ones that they’ve vowed to help other families living in the shadow of an untreated cleft. Clement explains:
They always say that he who feels it knows it better and will be the best person to speak about it. Now in every region we have patient ambassadors and patient advocates that are representing the organisation. That means gradually we are decentralising. Instead of me having to reach all the regions, I can count on people who can do this job. That means that our voice, our legs, are out there. They feel that this is something good that they want to come on board to support. They are very active, spread across the regions and the plan is also to increase the number.
It was during a visit to the northern region of Ghana when Clement tells us he met a woman whose story will stay with him forever. He was putting up posters at a local market when he noticed her following him. At first he asked her if she needed help, but she didn’t want to speak to him. Later, she followed him into a side street and it was there that she plucked up the courage to talk to him, making him promise not to tell anyone about what she was about to say. He tells us:
She said, ‘Follow me’ and took me straight to a house in a very remote area where there was a child with cleft. I was surprised. I took all the necessary details, I counseled her, and made sure that we got the child enrolled in the nutrition programme. And later that child got surgery. But what happened was that during the process of receiving surgery when they brought the child to her, we all thought that she would be so happy, but she came to me and and was crying. I was thinking at first they were tears of joy, but then I realised there was more to it than that. She asked me why I didn’t come two years before. She had earlier given birth to another child with a cleft, and the pressure from the community meant that they did away with the child. When I say, that I mean they killed the child. These are some of the things that happen behind closed doors.
This is the stark reality of the depth of stigma about cleft conditions and the pressure faced by parents in communities fueled by fear of the unknown. Clement tells us this is the reason the woman ran away and hid her second child. And the reason her reaction was so strong after seeing her second child after surgery.
She was mad that I should have come two years ago. It tells you that no matter what you do, it is not enough. You still need to push. Because just when you think you want to stop, maybe someone out there really needs that information.
This story is proof of the fact that Operation Smile’s work goes way beyond the new smiles made after surgery. For Clement it’s much more than that, he says: “I know that we are creating smiles, but I think that we are doing more than that, saving lives and touching lives. If you know what happens behind the scenes before surgery, then you can appreciate that we are indeed saving lives.”
Listening to Clement it’s clear that his work is emotionally challenging for him at times, but he says he’s grateful to hear the joy it brings to the majority of patients and families he meets. Their songs and celebrations are his reward.