Two reports, one from Africa, one from Asia, describe how self-care groups using simple, low-cost practices, are helping give strength and support to people affected by leprosy to take responsibility for their wounds enabling them to participate more fully in meaningful activities with their family, friends, communities and work places. Importantly self-sufficiency in caring for wounds lowers the chances of developing disabilities and prevents wounds from recurring.

The story of Pak Dulla in Indonesia illustrates a person who was open-minded about joining a self-care group. He recognised the personal, medical and physical benefits of self-care almost instantly and now recommends the practice to others.

Pak Dulla (left) with his friends at the Self-Care Group of Minasa Tene in Pangkep/Sulawesi)
Photo © Kerstin Beise

A tall young man sits, relaxed, on a plastic chair soaking his left foot. Together with him are seven other people, men and women, all with the same kind of black rubber bowl filled with water in front of them, soaking their feet. They greet us as we come in. We had been here at the opening of this self-care group, eight months ago. We are in Minasa Tene, a small local health centre on Sulawesi, an island in Eastern Indonesia, and Pak Dulla, the young man tells us his story:

“Do you remember what my foot looked like when we first met? There was that huge wound, and I couldn’t stand for ten minutes. Then the whole shank would swell up and become very painful. Look now, no wound anymore, no swelling! The skin is still weak, I know, but whereas my foot was a 100% problem before, now it would be considered a 20% problem only!

"In the beginning, when the health worker dropped by to ask me to join the group, I didn’t know what it was about, but I thought I would go and have a look, because I was happy that she had came to my house to call on me personally, as if I were someone special! Then I started soaking in the group and at home. Within a single week my foot felt better already, lighter. So I continued because I thought that this was something good for me. And I wasn’t wrong! In the beginning my foot was so bad that the health worker said I should probably go to the leprosy hospital for surgery. But this proved to be unnecessary. Now my foot is almost normal.

“I was cured of leprosy about three years ago, but then the problem with my foot started. I applied medicine, but it didn’t help. The wound would not heal; it only worsened. I could not work because I couldn’t stand. You know, I am a worker in the fishponds near the coast. It was such a difficult time. I do not own land or fishponds, so when I don’t work I have no money. At night, I often couldn’t sleep because of my worries. My wife stood by me, but it was very hard for her as well.

“I had heard about soaking before, but I never really knew how to do it; I only learned about it in the group. How can I put it? It is such a relief to have this group. Before, I was alone with my problem. I didn’t know these people here. Now we know each other and have become good friends. On every second Tuesday in a month I collect my friend, who lives locally, and we cycle to the health centre. There we meet the others. We all attend every meeting; nothing could stop me from coming! I hope we can always continue to meet up, but even if the group stops one day, I will certainly continue practicing self-care, because I know it helps me.

“During the meetings we soak together and scrape and oil our feet and hands, and we talk about everyday things or about how we do the self-care at home. Every month we compare our wounds and the progress we have made, and we are happy when everybody can show progress. It is very rare for someone to come with a new wound, because within a month we are able to heal them! So we only tell each other that we HAD a new wound, not that we have one!

“At home, self-care has become very normal for me. My wife helps me with it. Every morning when I get up, she has already put a bucket with water on the porch, so the first thing that I do every single day is to sit outside, drinking my coffee and soaking my foot. This has become my morning activity, and I enjoy it. In the evening, if I do not soak before going to bed, I feel something is missing. You could almost say I am addicted to soaking!

“When my foot was better, I started my own small experiment to find out how long I could stand and work without pain and my leg swelling up. After a while I managed one hour. That was already a good start and I was surprised. Now I start working in the morning and I only stop when the mosque calls at noon, that is at least five hours!

“I cannot wear shoes, or even boots, when I am working, because the water goes right up to our hips. We all work barefoot. But as soon as I am home, I check my foot, clean and rest it. I cannot change my work for something less dangerous for my foot. You know, this is what I do, what feeds my family. What I need to do is to pay good attention to my foot, to avoid injuries, and to care for it every day. And I know how to do that now.

“When my neighbour injured his foot, I told him how he could treat his wound like I do, by soaking it in clean water. He followed my advice and healed his wound very quickly. So I can even help other people who have never had leprosy!

“When I still had this big wound, I was ashamed; I avoided people. I only went to the mosque in my neighbourhood where people knew me and understood; I didn’t mingle with other people. But now I enjoy visiting other mosques and getting to know new people, because there is nothing to be ashamed of anymore.

“I’ve also got a special device on my sandal, a spring, to keep my foot from falling down. A shoemaker from the leprosy hospital came to our meetings and looked at our feet and then asked me whether I would like to have this spring. It is really helpful. My foot feels lighter now even if I don’t wear the spring. And I can go to weddings and other festivities now without anybody noticing my weak foot.

“You see, so many things have changed since you last saw me. I would be glad to tell other people who had leprosy about my own experiences. Everybody can stop having wounds. Look at my friends here in this group - we have all done it. We know what we can do!”

Recorded by Kerstin Beise and Ira Ekawati 
E-mail: kerstinb@indosat.net.id 

 

 

This account of the establishment of a series of groups in Nigeria, highlights how peer pressure within a group setting can encourage even those reluctant to begin learning how to do self-care. Equally, it tells of the transformation of self-care groups into self-help groups.     

Self-care groups in action in a settlement near Molai General Hospital, Maiduguri, Borno State, Nigeria
Photo © Mrs Ellie Plomp - de Ligny, NLR Training Adviser, Nigeria

Scene 1:
March 2000. The Out Patient Department of a busy general hospital in Nigeria

This hospital is also the leprosy referral hospital for the state. The doctor is seeing a lot of patients today, some of whom have leprosy. He has just attended to a mother with her child. Both have dermatological problems and the hospital is known in the state as one of the few where they can go with skin problems.

The next patient is clearly affected by leprosy. He hobbles into the room and sits down on the chair beside the doctor’s table. They greet each other as old acquaintances. Suleh has been here many times before. The doctor examines the right foot and sighs. A big, ugly ulcer has developed on the sole of the foot. It was only two months ago that Suleh was discharged from the hospital after being treated for the same problem. During his last stay in the hospital (as during all his previous stays) he was given extensive health education. Before discharging him the doctor had talked with him. Suleh had been able to tell the doctor everything that he was supposed to do and what he was not supposed to do. He could explain why the ulcer had developed. But he could not tell him why he had let this happen. The doctor had admitted Suleh to the hospital and asked himself what had gone wrong. He saw too many people like Suleh: They know what to do and what not; they know it all and still they have recurrent ulcers and are considered by some to be “professional” patients.

Scene 2:
April 2001. A meeting room near the NLR office in Jos

Eight doctors of NLR supported hospitals and their physiotherapists and other staff of the Physiotherapy Department are sitting around the table. The discussion is about starting self-care groups of former and active leprosy patients around their hospitals. A number of the meeting participants have been to Ethiopia and have seen self-care groups functioning. One of the main objectives is to reduce the number of ulcers, especially the recurrent ones, and in this way to reduce the number of recurrent admissions to the hospital. Another important objective is to change the attitude of the persons affected by leprosy by encouraging them to take responsibility for their problems.

The meeting participants are somewhat sceptical about the impact of the self-care groups, but they agree to start groups.

Scene 3:
March 2005. Same venue as above

The same eight doctors and the staff of their Physiotherapy Departments are present for a follow-up meeting. These meetings are held twice every year. During the meeting the problems encountered are discussed and possible solutions are agreed upon. The atmosphere is optimistic as the programme is progressing well. Spread across the eight hospitals there are now 31 self-care groups with 444 members of whom only 39 have ulcers. These groups meet regularly, mostly twice a month together with a facilitator. The facilitators and the group leaders, the latter  chosen by the members, have been trained during a one-day training course.

The results of the programme are clear: the number of ulcers has gone down considerably and so has the number of recurrent admissions. Furthermore, the members of the groups have a changed attitude towards their challenges. They look cleaner, their clothes are cleaner and not torn, and a number of them are actively trying to find other ways of sustaining themselves other than begging. One of the biggest challenges encountered is the fact that in the beginning the members of the self-care groups expected money or other benefits. It takes some time before they understand that the benefits are in the fact that they themselves are changing their outlook on their problems.

Scene 4: July 2006.
Molai General Hospital in Maiduguri, Borno State

The two co-ordinators of the Self-Care Programme, Dr Tahir Dahiru, NLR Medical Adviser and Mrs Ellie Plomp – de Ligny, NLR Training Adviser, are visiting the self-care groups situated around the hospital. They expected to find six groups, but to their surprise they see ten groups of very enthusiastic people. Four of the groups are new, but they can see that the spirit is the right one. The mature self-care groups are developing into Self-Help Groups. They have a grinding machine, which was bought with funds from the Federal Government. They are in contact with several governmental organisations which are active in the field of rehabilitation. They have managed to get some training places for some of their members. In general the spirit is: Let’s try to find another way of sustaining ourselves other than begging.

Scene 5:
November 2007. The conference hall behind the NLR office.  Another follow-up meeting

Present are the project leaders and the self-care group co-ordinators of ten hospitals and eight state tuberculosis and leprosy programmes. Every project reports on the progress of the self-care groups in their area and the challenges encountered. There are now 69 groups with 821 participants. Only 74 members have ulcers and the number is going down. Some of the old “professional” patients have not been seen in the hospital for a long time as they are now taking care of themselves.

From the reports it becomes very clear that running self-care groups in urban areas is not easy. The members are much more mobile and also much more used to begging. This causes irregular attendance of the self-care group meetings, which is hampering the group-building process. Furthermore, the demand for financial benefits is consistent in urban groups.

Our plans for the coming years are: Starting self-care groups in the five states not yet included in the programme; assisting self-care groups with networking among non-governmental organisations and government organisations active in rehabilitation; using the self-care groups in advocacy and enlightenment campaigns aimed at lessening the stigma.

The doctor in scene 1 who asked himself why his patient did not take care of himself now has his answer: The influence of the group on the individual members is a very important factor. As a member of the group you do not want to lose face by being singled out as not taking care of yourself.  

Dr Tahir Dahiru, NLR Medical Adviser
Mrs Ellie Plomp – de Ligny, NLR Training Adviser
E-mail: hplomp@yahoo.co.uk

 

Useful Publications on Self-Care Groups:

ILEP Learning Guide Four: How to Prevent Disability in Leprosy
- Part 1
- Part 2
- Part 3

WHO Booklet: I Can Do It Myself (For People Affected by Disability who want to Prevent Disability)

Ministry of Health of Nigeria: A Manual for Leprosy Control Programs in Nigeria on Establishing and Running Self-Care Groups

Ministry of Health of Indonesia: Self-Care Groups in Indonesia: A Manual for Leprosy Control Programmes
Ministry of Health of Indonesia: Examination Book for Self-Care Groups   

 

Category: Field Activities, Nigeria