Shaping Healthier Futures Through Storybooks

Stories from Jimma and Gondar chronic disease projects

1. The burden to a mother of a diabetic son 

Zahara is mother of a 12 years old Type 1 diabetic boy who was not diagnosed until one day she came to the medical OPD with symptoms of urinary tract infection. Her mouth was full of Khat, a green stimulant leave. Khat has similar effect to Amphetamine, a psycho-stimulant herb commonly used in Jimma area. I asked her why she is doing this in the clinic and expressed my disappointment and something about her not being a good example to younger people. She apologized and started to explain with tears welling up her eyes. Zahara is a single mother who supports herself and her diabetic son by selling vegetables at the village Market ‘Gullit’. There is very little income and to put enough food on the table for the whole family, hence the mother eats little to save for her son. She has gone on with little or no food for days as her 12 year old son is so hungry and eats up whatever is available in the house. She feels so much pity for him and tried to suppress her hunger with whatever is available and Khat she found out blocked her appetite better than anything else. I told her this could be diabetes and to bring her son for check-up. He was confirmed with diabetes and was registered in the paediatric side for free insulin supply until the age of 18. Her misery was over as soon as he started follow-up and treatment.

Dr Yoseph Mamo

January 2014

• Dr Yoseph Jan 14 Update #1 (PDF)
  

Stories from Jimma Chronic disease project

Story 1: holistic approach is the best policy to chronic disease care

A 16 years old boy had been brought by his father to Jimma university hospital with problem loss of weight and extreme thirst and hunger. He was subsequently diagnosed with Insulin dependent diabetes (Type one) and after inpatient training how to inject insulin, he was sent back home with insulin sufficient for two months. He continued his follow up for every two months.

One day two years later I saw the boy drinking the forbidden coca cola before his visit for his blood sugar check-up and insulin refill. I was disappointed to see him do that after several hours of individual and group health education on diets harmful to a diabetic.When he appeared to see me in the clinic, apparently unaware that I have seen him practice the ‘taboo’. I asked him about his drinks after few minutes of chat and physical check-up. He was taken aback and after few minutes of hesitation told me the following story

After some six trips from Home in Shebe area (60 km from Jimma vehicle trip and another 4 hours walking journey, His father was unable to support him and they discussed and decided that the boy should stay in Jimma town doing daily labour and getting every month to the hospital for his insulin. The boy had very serious difficulties with daily labour, place to stay and eating. One day he heard a fellow patient, how he drinks coca cola before his check up to acquire more insulin vials and how he sells his extra insulin to buy food and pay for rent. After that he decided to follow in his footsteps and acquire more insulin than he actually needed to sell and earn his living.

This was a shocking story but also an eye opener that my job isn’t simply medical but is hugely impacted by economic poverty. From that day on I started work to organize patients under an association and establish some kind of self-help funding so that patients can be economically empowered as well in addition health education and information. Though this still continue to be a challenge.

Story 2: Once a chronic disease nurse, always a chronic disease nurse

One day I got a call from Agaro, a health center 50 km away from Jimma University hospital. The very reliable nurse caring for chronic disease patients at the clinic was being transferred to a rural health center within few days. This was one of the disheartening news, to lose a nurse who is good to patients and reliable team member. We needed to train another nurse from the same health center to continue the work and this nurse has been trained only 6 months earlier and has not served long enough to return our investment in time and money.

Few months later I got a call from the same nurse who has left the Agaro Health center. He reported to me that he has a lot of epilepsy patients coming to his clinic and he needed supply of phenobarbitone. I was surprised and asked why and how come? He told me that the area he was currently working in was predominantly Muslim community and they didn’t know that epilepsy was amenable to medication so locked their epileptics and mentally ill chained away to their bedrooms. When he began teaching about treatment of epilepsy and demonstrated in few the possibility of seizure control, many flocked to his clinic for the ‘miracle drug’ .The nurse who was trained and moved to this other health center where we do not give support was actually transferring his skills and has initiated a new center of care for epileptics. He was not lost to the cause at after all and our labour was not in vain.

Many nurses when they chatted with me tell me that we have ‘hooked’ them to the patients… one said to me ‘Intimate Relationships are formed between us (the nurses) and the patients. Even if you stop supporting us with your supervision, medications, and supplies, we are unable to simply quit caring for the patients’. This is proof of institutionalization of the culture of caring for chronic disease patients-a strong assurance for sustainability in Jimma area.

Story 3 Nurse led chronic disease  care program

There are no doctors at the health centers due scarcity and migration to bigger towns in the country. Therefore many of the tasks are ‘shifted’ to the health center nurses, who are trained to take care of chronic disease cases. Many nurses, throughout Ethiopia are trained to take care of  HIV/AIDS and TB cases but only in Gondar and Jimma Zones do we get similarly trained nurses taking care of patients with Diabetes, Rheumatic heart disease, Hypertension and Epilepsy. They are quite good at it but need on-going support through supervision, mentoring and continuing on the job and onsite training to master patient follow up and care skills. They also need job aids, references and protocols to make their daily practice easy for them and safe for their patients.

Picture 2: Evidence for the success of decentralization and a nurse led chronic disease care comes from diligent record keeping of follow the up process. This would tell the story of the impact of care including effectiveness of treatment delivered, disease control and prevention of acute and long term complications. Nurses need to fill out simple but core information on registers and follow up sheets to include vital program and clinical indicators respectively.

Story 4 Community approach and involvement for Chronic disease care

 Picture 3: Health extension workers are important and recent among the team (specialist doctors, nurses, pharmacists, laboratory technicians) caring for chronic disease patients. These are contemporary health cadres in the Ethiopian health care system primarily engage in preventive interventions. These cadres are recruited from among their community for a short training and dispatched back, a reason for their high commitment and a number of high impact outcomes in vaccination and other access to health care. Most of them aspire to develop career in health care field such as nursing, pharmacy and environmental health worker.

These cadres could also be useful in increase the awareness of the community on chronic non communicable diseases. They can help in early detection, prompt referral and tracing of those who have been lost to follow up. In the chronic disease programs in Jimma and Gondar we are reaching out to this health cadres and orienting them on the most important Non Communicable Diseases declared by Ministry of health (diabetes, heart and respiratory diseases) and also in epilepsy. The health center nurse second from far left (brown shirt) would receive referrals from her team of health extension workers, confirm diagnosis and start treatment according to standardized protocols and training delivered to her at Gondar University Hospital Chronic disease clinic.

• November 2013 update from Dr Mamo (PDF)