Moving forward towards a Club Foot Free Madagascar

The Madagascar health minister was in Tulear today and Kate and I ran into him at breakfast. UNICEF is completing their national polio vaccination campaign in Sakahara. When we spoke he mentioned that he would be around to give us his card and organize a meeting. So, on the way to theatre today (I have my medical student hat on today, cannulas, catheters and surgical drapes abound!) we had a brain child that makes me PRETTY excited.

This trip I have been struggling with the idea of how we are going to use the funding in line with our overall aim and philosophy: to make it sustainable and accessible for local people. But things are starting to come together: we were told about the 7 centers that do orthopaedics and disability treatment, and also attempt to deal with club foot. So our thought is to make contact with each centre and with up to two representatives, coordinate a Ponseti approach throughout the whole country. This is actually a possibility now.

In addition, we can actually speak to the minister for health and ask him if he will support this and if he has any ideas about how the government can inject funding in order to make this project more Malagasy owned. If we did manage to coordinate the programs, we could theoretically order good plaster supply in bulk, boots and bars in bulk and use our funding to help with supply throughout the country, making the treatment available more widely and more cheaply.

<momentum building>

If it is a Madagascar wide project that is somewhat centralised, we could potentially have annual meetings, training days and even conferences! Okay, breathe out…it’s still a pipe dream. But I would like to say, that I feel incredibly lucky to have an opportunity to participate in making the kind of change I’m really passionate about. Making Aid sustainable. Giving ownership to the people who need the service. This is the gripe I have always had with foreign aid and now I have the opportunity to keep it local. It’s possibly one of the most exciting days (as boring as it sounds) that I have had here!!!

DSC02061

Next stop is Sakahara, when orthopaedic surgeon, Kate becomes anthropologist!

Sambatra’s Story

I have a story from one of our patients, to give you an idea of where they come from. This is Sambatra’s story.

Sambatra, a 3-year old girl from Nosy bositra, Ambiky was born with a unilateral right clubfoot. When she was born, the doctor noticed and they tried different things, but nothing worked. The parents were very sad. They are Christian and they believed that god made it for them, and that it was a natural cause. They were sad, but they blamed god ‘you gave us a baby, which is amazing but you did not make her like the others’.

 

DSC02032.jpg

First clinic visit is always a bit scary!

They heard about the clinic last year when the mother brought Sambatra to the hospital. One of the nurses saw her and called out to her. ‘Go and get treatment, it is simple, and it works!’ So they went to the Pied Bot clinique full of hope. They thought they could fix their daughter, but when they got there they were explained the process. It takes a few months of continuous plasters, and they would have to attend the clinic every week to begin with. They live 170km away from Tulear and had no family to stay with. They were devastated because there was treatment they could not access. They were advised to come back in March, when the visiting team was here from Australia and in the meantime try to collect money to be able to afford the treatment. They went back to their village, scrimped, saved and collected money for three months, and then came back on the 11th of March.

When asked how they were feeling, they were excited that they could finally treat their daughter. They were very happy to be able to access the clinic here and they had found someone to stay with while they completed the treatment. As Sambatra was receiving her first plaster, they explained that there are many children with club foot in Nosy Bositra, but they don’t have enough money to come. Sambatra’s family is hoping to take her back with straight feet to show them the treatment works, and encourage them to save money to come and get treatment as well. Word is spreading, there just isn’t enough money.

Sambatra’s family said I could use their story and their photos to demonstrate the need for adequate access to treatment, and I will continue to follow her through.

When the plaster was finished, the family was ecstatic because they saw that the position of Sambatra’s feet could be altered, which meant that there might actually be real hope that she would walk normally one day. They promised to follow the treatment plan meticulously, and that their daughter would be a model for other families. Just before she left, I asked Sambatra and her sister what they wanted to do when they grew up. “I want to be a dishwasher” shouted her sister, to everyone’s amusement! But Sambatra was very shy and didn’t want to answer. When we asked again, she said quietly, ‘I want to be a doctor’. This is what we really gets me. These children who, would otherwise live with a disability, reliant on their family for their future, get to choose their path in life.

DSC02038

Plaster education and awareness

Day 3: Clinic

N.B. all children/parents in this forum have provided verbal or written consent for their photo to be used in this way.

10/03/16

We left Tana at the ungodly hour of 4:00am, to make a full day of it after 3 days of travelling. Upon arrival into Tulear, we saw Sedera waiting for us and felt the familiar chaos of such a little poor city. While it is not by any means a picturesque city, there is something reassuringly familiar about the hustle and bustle, the man in the wheelchair who begs at the airport every day and then wheels himself a few km back into town afterwards and the manual luggage collection that consists of a wooden trolley from the plane to the door of the airport.

We went straight to the clinic and were struck firstly by the changes: there was a new cement waiting area, benches for patients to sit on, and a tin shade. Luxury! Secondly, the fact that aforementioned equipment was actually being used; there was a FULL line up of patients for the weekly plaster clinic! All 11 of them!

DSC01991.jpg

I can’t tell you the feeling of pride I get when we walk in there and watch the ‘trainees’ (we aren’t supposed to call them that but I still do in my head) work like a well oiled machine. They check the patient’s identity, examine their feet, announce the Pirani score and then either commence plastering or start fitting the boots and bars, all the while singing to the (screaming) child, playing with them or giving them the ONE toy car that seems to have outlasted everything and plays the same song over and over (and over and over).

This goes on and on until all patients are treated and out the door, at which time they start cleaning the room and go home. This well run, organized clinic is what resulted in all the children I have seen so far, getting such fantastically straight feet. Our dedicated, committed and passionate workers (seen below) just blew me away.

DSC01995

I spoke with one mother who has had a good result, and she said that in order to reach new babies who cannot afford to come to Tulear we need to mobilize our treatment, as she knows of many babies who just can’t afford to get into the town.

DSC02029

I interviewed the mothers, and found that our most recent radio campaign was reaching a previously inaccessible area (Sakahara), and there were 4 new patients from this little village. They all reiterated what I have been told by everyone ‘if you find a model of successful feet, the people will see that it works and just come, no matter what they think’. Finally, we saw 2 babies with fantastic, straight feet who were treated entirely by the local clinic with no intervention at all by ADFA!

 

All in all this was a fantastic day!

Day 1 and 2: CRMM in Antsirabe

After 3 days of travel, many an airport waiting lounge and some very unappetising coffee we made it to stop one of the tour de clubfoot: Antsirabe, which can be seen on the map I put up yesterday.

Today was really an administrative and information gathering day, we went to Antsirabe and looked at the new theatre suite. After a meeting with doctors, engineers, builders and project coordinators, I was struck by how difficult building and working between two cultures can be. I have put this in because it does help to give background to our project.

I was able to see how a place that is not too far in kilometers from Tulear, but a world away in terms of economic wealth can be organised, and utilised as a base for nation-wide collaboration and a potentially club-foot free Madagascar.

Below are some of the photos from the market that are beautiful, but also demonstrate the differences between the two cities.

After meeting with Dr Bona (name changed for privacy purposes), we realised there was significant scope to collaborate with CRMM (the only truly multidisciplinary treatment centre for children in Madagascar), and 5 other centres around Madagascar in order to streamline treatment, and coordinate a national program. This is truly exciting, as it is the first time such a collaboration has seemed even remotely possible, and Dr Bona seemed very enthusiastic about the idea!

The next few days will hopefully answer a number of questions, such as: why our numbers seem to be dropping off (we are hoping that this means we have found most of the children in the inner region of Tulear, and now will be able to start working on the outreach aspect of the program).

 

Trip 5, Day 1: Practically a veteran…!

So here we are again, waiting in Mauritius for the connecting flight over to Tana. I’m getting used to the 3 day trip and the lengthy stopovers, and we seem to have learnt the tricks to speed up the boarding and transit process with our 27 boxes!

This trip is slightly different, as we are looking at different potential locations for clinics, in addition to evaluating the pilot in Tulear. Tananarive is the capital of Madagascar, Tulear is where we work primarily, and Anstsirabe is a city we are looking at a collaboration with CBM, in order to attempt to eradicate Talipes in Madagascar.

madagascar

Madagascar: note Tulear and Antsirabe

Project Objectives:

  1. To provide a free, effective clubfoot clinic to Tulear, Madagascar
  2. To expand the reach of the clinic to the regional and rural areas
  3. To interlink with other organisations and expand to create a national clubfoot screening and treatment plan
  4. To have this be a sustainable locally funded and run program

This trip we will be looking at the unintended outcomes of the clinic so far, its impact on beliefs and values of the people who use it, and those affected by it.

Anthropological Perspectives

“We have to design a health delivery system by actually talking to people and asking, ‘What would make this service better for you?’ As soon as you start asking, you get a flood of answers.”  – Paul Farmer

This is just a quick update on how the research side of the project is going. I presented a paper: ‘From the fluid into the Gantt chart: exploring the moralities of delivering effective foreign aid’ at the Australian Anthropological Society Conference in Melbourne, December, 2015. Below is a small excerpt of the paper, which was well received.

Medical aid, international bilateral funding, philanthropy and research into the health problems of the world’s poor is broadly viewed as being well-entrenched within the realm of the good, the moral and the ethically sound. From the perspective of an anthropologist and medical student, this paper argues that there are several challenges to this largely unquestioned morality. Through a case study with an Australian aid organisation (Australian Doctors for Africa), I sought to understand the beliefs, attitudes and understanding of clubfoot (the colloquial name for a congenital musculoskeletal abnormality known in medical literature as Talipes Equinovarus) in order to implement a screening and treatment program that had previously been unsuccessful for many years. In Toliara, Madagascar, the collective cultural belief that incest causes clubfoot, preventing families seeking treatment.

This paper explores whether it is ethical to alter a belief that has existed, that would otherwise persist, and that has shaped behaviours and impacted identities, simply because it does not fit in with the aims, structure and projected results of funding agreements? Is it ethical to change beliefs in order to impact treatment seeking. A number of pragmatic solutions that did not seek to alter attitudes, but worked with beliefs to ensure a more sustainable outcome were implemented throughout this project.

This research aims to define the of the good and ethically sound aid as working within an existing belief system to create a joint project that was both locally owned and internationally supported. Throughout the past 10-15 years many critiques of the underlying tenets, and culturally ignorant delivery of foreign aid, but these have largely abated. As organisations become more multidisciplinary and more culturally aware however, there may be subtle ways in which they superimpose their beliefs onto local cultures, hoping that people in these cultures will see the light and embrace the scientific perspective of medicine and health. From the fluid (beliefs, attitudes, and culture) to the Gantt chart (structured, micromanaged, and finite aims of funding bodies for aid organisations), this paper examines how we as a collective attempted to navigate the ethical dilemmas of international aid provision.

12810264_10156615490765191_116927791_o

This paper will form part of the bigger project, but I am very passionate about the delivery of sustainable aid that meets, or attempts to meet the needs of the people it services. The only way to do this is to start to ask them what they want, and how they need it delivered.

day 4: clinics, meetings, road trips.

Today was a quiet day in the clinic. We saw 3 kids and I interviewed their mothers.

There was one particular success story that made me (Nick and Kate included) extremely happy. A lady from the country who lived 300km away from the clinic. She was being teased by her community and so she thought she should do something about her child’s club foot.  In order to do this however, she had to give up work and move to Toliara for 7 months for the duration for the treatment. As you can imagine she was very compliant with all the steps required. By the time we saw her, her baby’s feet were flat, straight and very good looking. You can see the photo below. As a result she went back to her community and stated that they were ashamed and embarrassed for having teased her, when he baby’s feet were fine. She was really happy with how the treatment had gone.

The successful treatment

Successful Pied Bot treatment, as seen by the positioning of his feet on the table.

This ‘teasing’ pattern continues to emerge. Whether or not it holds the key to getting more patients, I think its worth pursuing.

We are getting the comic strip drawn up today and tried to iron out some of the issues with follow up; it doesn’t seem to be a part of Malagasy culture to pursue these patients. In the process of troubleshooting we decided that for those families who live in the country with no access to phones, we would try to utilise the ‘community health agent’ to follow them up. This meant a trip to the health inspector’s offie to ask for the list of names.

Herein lies a perfect example Malagasy bureaucracy. After the health inspector, I was sent to the director of health for the Toliara region to ask for cooperation and names. There are two regions in Toliara (1 and 2). The director for Toliara 2, which is the country area was in a meeting, but we were told if we wanted to get an answer we would have to go and see her. The meeting was in a village 40 minutes from the town. So after lunch off we went. A long trip, a few stops and what appeared to be  a wild goose chase and we finally found the director. a 4 minute meeting and we had the permission for the names. Success.

sucess

Just a quick 40 minute drive back. What ended up being a 3 hour round trip got us the list of names and numbers we needed  to attempt to decrease our loss to follow up. Things don’t always happen as quickly as you would like them to here.

Either way it was a successful day and I will continue to follow the information as it comes up.

Day 3: clinic and interviews

We moved the days of clinic operation from Tuesday, Thursday and Saturday to Wednesday and Thursday to make sure we see all the follow up children before the weekend.

When we arrived at the clinic, the usual line was outside, however this time there were children with all sorts of pathologies because Kate was conducting a clinic other than clubfoot in the afternoon. Many things get lost in translation over here so it meant a complicated morning for her but a fascinating exposure to everything under the sun for me. Paediatrics like you’ve never seen it before.

I interviewed each mother after their child had been plastered or fitted for the boots and bars

Some of the mothers have been very happy with their outcomes, and have offered to be ‘witnesses’ for a new educational campaign.

Anthropology is about long term observation, and I found that finally after 4 trips I have started noticing particular patterns regarding the cultural approach to club foot. Think this will markedly improved our ability to get through to people and help the education to be effective.

I have noticed that the majority of mothers explain that the familial and societal reaction to their child’s club foot is one of shame, and they say it is a ‘natural thing’ that should not be fixed. The mothers however, despite the cultural resistance go to get treatment for their children.

The reasons given for this have been varied; the mothers get very upset that their children are being teased by their friends; they worry that they won’t get jobs or drive and they worry that they will never get married and run/ be part of a household.

We have also noticed that a huge number of educational campaigns are drawn as cartoon strips, and when I enquired, this seems to be the cultural way; A story with pictures to demonstrate, rather than words. Now that I have seen it seems so obvious but it just took the time and patterns to become clear.

Today we have the second day of clinic, but I play the role of director/anthropologist. We will shoot a new ad with happy mothers talking about their experiences, and the same artist that drew our signs will come and draw the comic strips for our third attempt at an educational brochure.

Watch this space…

the photos are taking a long time to upload so I will put them up this afternoon.

Day 2: Arrival in Toliara

We went through the hospital today and saw the state of the maternity ward (abysmal), the paediatric ward (sparse) and surgery (new enough, but not functional) of the public hospital. Finally, our clinic has had further renovations (A tin roof for shade, and a bench so that patients have somewhere to wait, rather than the ground in the sun!

DSC01414 We then inspected the private hospital which was, as always  much cleaner and well organised than the public hospital. I was surprised to see a very large photo above the theatre with the ADFA team on it. See below. Pretty cool, having your face in a hospital across the other side of the world!

DSC01419

The rest of the day was spent organising the next week. We ascertained the current obstacles to the clubfoot program.

1. People aren’t patient and don’t want to wait a year or so for the treatment for be completed

2. They are hard to convince, and want to see the evidence that it works (photos are not enough)

3. The patients who live a long way away in the country are particularly poor and do not have enough money for the fare or accommodation/food during the treatment

4. They stop treatment too early (lack of education)

5. It is hard to communicate with families in the country as they do not all have phones.

These are the questions we will answer in the next two weeks.

Trip number 4

14/03/14

So here we are, having Arrived in Tana (Antananarivo) after a bit of a grueling 36 hours – the system in Madagascar is not the epitome of efficiency – but that’s not what I’m here to write about.

There are new aims for the club foot program (or pied bot Clinique in French)

  1. To implement a screening program that will work with the culture and technology available;
  2. To find more children to treat 
  3. To assess whether attitudes have changed towards club foot in the previous 2 years since the inception of the program;
  4. To assess community perceptions of the progress of the program;
  5. To ascertain the likelihood of long term sustainability and ownership of the program and;
  6. To collect accurate data on the children treated, incidence and prevalence data.

In order to do this I will set up a number of meetings with parents, community members and local leaders. The methodology of open, semi structured  interviews and open discussions will be maintained, as I collected baseline data on caregiver attitudes towards the treatment. I am looking forward to finding out if these have changed since I last spoke to the mothers.

I will attempt to be more thorough with the blog this trip, but the entries seems to become more sporadic, the more action we see unfortunately! 



Since I don’t have any amazing photos as yet, this is Dr Kate Stannage (paediatric orthopedic surgeon) Nick Butteigeig (paediatric physiotherapist) and myself, ‘team club foot’