This week I continued my home care duties and visited new clients. I bought Mr. Captain a sheet, a mattress, towels and a new mosquito net. I also made a plan to buy him extra snacks to start building him up. His family only gives him one small meal per day. I am also giving him money for his daily porridge he can have for breakfast (150Tsh/day-10c/day).
Charles also took me to see two other clients. On Wednesday we visited Mariam, a 57 year old HIV positive who had a stroke 5 yrs ago. She does not speak or walk but can do some facial expressions like smile and nodding. Mariam has stage 4 AIDS now so the care for her is palliative to keep her comfortable. None of her daughters are positive or the grandchildren.
Mariam appeared to be itchy all over and has small skin lesions/small cuts also all over her body and looked very uncomfortable. I gave her Piriton tablets and cream to help with itchiness. She lives in a house with her four beautiful daughters and some of them have children too. They all look after Mariam and it seems to me that stigma does not exist in her household, which makes me so happy. Mariam’s husband died two months ago and she has not been taking her HIV medication ever since because no one was buying her Mango juice. Her husband used to do and she will only take her ARVs with that. I guess it is too expensive for the family to buy so I will provide it for her from my sponsor money. She had not seen a doctor for 15 months so we took her to the hospital CTC centre on Friday. Her sister is a nurse in Bagamoyo hospital so it surprises me that she was not taken to be seen before this. The doctor was angry with Mariam’s daughter who came with us to the hospital. She had to have adherence counselling, get new appointment for CD4 check and she got new medications (ARVs).
A malnutrition is an issue but I have not figured it out yet as I need to see more. There is a problem especially with Mr Captain. He is malnourished you can see that. His family says they give food but Captain tell it is very little and sometimes nothing at all. He is not able to cook for himself. If I give the family porridge ingredients to cook, they want it for the whole family. We are not here to feed them all and all his family appear well nourished. He gets cup of porridge now daily. He does not like the family to see that we give money but Charles and volunteers in the past have had several meetings with the family and explained to the family that we are only giving him little money for porridge and that we are here for extra support and not to replace the family support. I take him extra things in every visit e.g. bread, cakes and bananas and water for drinking. Last week I asked him what he likes and he said he likes rice. His family only give him half portion of ugali (maize meal) a day.
He asked if I could buy some rice and his sister will cook it (she lives outside and is the one who gives/cooks ugali or whatever the family eats). I suggested buying half a kilo. Captain did not like this and said he would rather eat with the family and I should buy one kilo. I did this and they had the meal on Saturday so I do not know a solution for this. For sure we cannot keep buying the family food but how do we feed 'just' Captain as he relies on them? I did explain to him last week this is a problem.
Abdullah is also very underweight; only 35kg. He reports that he does not get food at home and that his auntie once tried to poison him! Charles buys him meals when he comes to the office. The stories never seem to end.
He appears to be a clever boy and knows computers. I want to help him by giving him money (from my sponsor money) to start a small business. He used to share a business with a friend. He wants to sell some food stuff in his street like ugali flour, sugar etc. He says that is where the good money is. We are going to find out now the costs for these items from the wholesale shop. He seemed very happy. Now he has been confirmed with TB and I went to the hospital with him to be trained to give injections to him daily for 54 for days so he does not need to walk to the hospital every day.
Abdullah’s housing situation is also a disaster. He does not want me and Charles to have a meeting with his auntie and the chief of the street (I was told by Charles this would normally be the procedure) because it will cause more conflict and bad atmosphere at his family. We have to respect his wishes but how can we find a solution to this? Maybe the small business could be a start to a better future. When I mentioned about it his face really lit up!
My second week was very busy with trip to Dar to get supplies and learning about UKUN’s clients. This week was also told by Charles that UKUN needs to move into a cheaper building by end of the month, which is in 2 weeks time (we need to leave this building by 30th March!).
I went to Dar Es Salaam to pick up medical stock of supplies for the office. These were things like; gauze, dressings, medication and gloves. The money was donated from a donor from USA through East Africa Aid and sent via Western Union. I had a friend to help me to bring the stock to Bagamoyo in a local bus. Now we have supplies at least for few months!
This week I met Abdullah who is one of our clients. He is 17 year old boy, with the appearance of about 12 as he is very underweight. He was born HIV positive. His both parents died of AIDS 5 years ago. After their death his grandmother took care of him until she died too just over year ago. Now Abdullah lives with his auntie but there is a lot of stigma within the family against HIV so Abdullah doesn’t feel welcome there. He has been coming to the clinic daily all week. He watches TV, sleeps and sometimes eats when we give him something. He never asks for anything. He has been complaining of cough for a while so we took him to the hospital for TB investigation.
When we arrived to the TB investigation unit we needed to find his file first. He is known as the ‘lost of follow up’ as he doesn’t turn up to his appointments at the HIV department. After finding his file he was seen by a doctor straight away. We reported his cough, gave history (he has had TB in the past) and the doctor requested chest X-ray. The X-ray showed some shadowing right lung spread to the left lung so they were querying if he has pulmonary TB. After this we went back to the doctor who then examined him from head to toe and listened to his chest, which he said was fine and he let me to it too. He said to confirm TB we need a sputum sample for AFB but unfortunately Abdullah is not producing any at the moment. He was started on strong antibiotics Septrin 960mg twice a day for 7 days and given 2 sputum pots in case he produces any cough. He has to bring them to the hospital to be able to confirm TB. If those antibiotics do not clear the possible chest infection after 7 days he will be started on TB treatment anyway. Abdullah is a quiet boy, he doesn’t say much but I can see his sadness. I hope we will become good friends.
Few people came for HIV testing at the clinic too this week, about 2 a day. I was told that I will not be able to test people because of the language barrier. Whoever does the testing, need to do the counselling too.
We went to see 2 clients in their homes: Semeni and Captain. We travelled to Semeni’s house first by Tuc Tuc; small 2 seated taxi that has originated from India. She lives close to Bagamoyo town with her parents and other family who all look after her well. I did not recognize any stigma at all. Semeni is 33 yrs old, she has 2 daughters (plus she has lost 3) and no husband. She has been diagnosed with HIV about 5-6 yrs. Last year she lost a baby due to very low CD4 count; her CD4 was 9 at the time! Now her CD4 has come up to 325 (last Sep 2012) and she has put on weight. She has a ‘drop foot’ her left leg and finds it difficult to mobilise.
She reported that she has had Malaria now since the 27th Feb so around 2 weeks and she is on medication and recovering. Before her illness she was able to mobilise 0.5km independently with just a stick but now she can do only very small transfers and needs help as she has weakened. On her appointment with malaria investigation, she was also given her Antiretrovirals (ARVs) for two months. I gave her my number just in case she needs to contact with anything but at the moment she seems fine and she has all her family to support her. Her story really is a success and a good example of been able to recover with great support and doing physiotherapy (exercises). She seems to have a lot of motivation and she is very much loved.
After that we went to see Mr Captain. He has been a client for many years as well. We found him in his room that was in a bad state, the smell was disgusting. He hadn’t had a wash for over a one month. His urine can was full, bed sheet ripped and almost black colour. I do not know how he was able to live there but obviously he had no choice. Unlike Semeni Captain’s family does not help or support him. Stigma exists there very much. Lots of his family live around him but no one helps with anything. This is very sad. I have to come all the way from Europe to clean his room and give him a wash! Captain appears thin, he is not able to mobilise and uses a wheelchair but no one had pushed him outside out of his room for over a month! He smells bad and does not look happy.
I gave him a good wash in a shower and then we did his laundry with Charles. Charles got him clean clothes to wear and I bought soap, washing powder, water to drink and Dettol to disinfect his dirty clothes and the bed sheet. He was very happy.
Next day we went back to him and took him to hospital to his appointment for HIV centre. He was given more medication (ARVs). After hospital we took him back to his house and I cleaned his room and finished his laundry. One of his neighbours cut his nails (at least!). I will be going there to visit him regularly now and to shower him every 3 days. I am happy to have finally found ‘famous’ Mr. Captain and I am so happy I am able to help him. I wish his family would be more supportive but maybe I will find a way somehow to do that.
My first week at volunteering at UKUN project, I gained an insight what it is all about and the challenges that lie ahead of me. (March 2013)
UKUN (Uhakika Kituo cha Ushauri Nasaha) is a non-governmental, non-political & non-profit organization based in Bagamoyo district in the coastal region of Tanzania. The mission of UKUN is to contribute to the primary prevention of the HIV/AIDS pandemic in Bagamoyo town; to support palliative care services for people living with HIV/AIDS and to improve the quality of life for the district’s Orphans and Vulnerable Children (OVC)’ (UKUN Website 2013).
There are 97 villages around Bagamoyo district that UKUN has been concentrating its projects on. I was told that one of the big challenges to UKUN is how to access them all cost efficiently.
Having visited Bagamoyo town many times before I can to know many people who have volunteered at UKUN and helped with their field work. Debbie Fair Ellis, and Tarek El Shayal (of the East Africa Aid Foundation) are couple out of many that have helped prepare me for my volunteering task. I am a nurse from my profession and want to be part of the Home- Based Care programme to improve the quality of life for people living with HIV. I also hope to educate and raise awareness to the people in Bagamoyo about HIV, TB and malaria prevention.
Prior to my travels I started a fundraising campaign where I collected sponsor money from UK and Finland and will donate $500 in total to UKUN. This money will be used to help this project from its financial crisis and anything that is needed for the patients.
UKUN will be changing its name to People’s Health Initiatives (PHI) because it is helping in other areas now including prevention of Malaria and other diseases. In the past UKUN had plenty of donors and was running various projects. Also Cross Cultural Solutions (volunteer organisation) was sending volunteers regularly to work in UKUN. Now almost all donors have gone, having moved into other things, and there has been a rapid decrease in available finance. Now there are no projects running, all paid staff have left and Cross Cultural Solutions are having a ‘dry season’ with no available volunteers. As a consequence of that they have stopped their Bagamoyo programme completely. Not having enough volunteers does not help any of the projects in the community.
That is not all; one of UKUN’s key volunteers sadly died. He was a local man who was mainly doing home care for the severely ill HIV patients. He was also running a football club for children, was a translator for foreign volunteers and was involved in local politics. He was very much loved and respected and Charles is grieving for him too.
This first week was spent with Charles around orientating me to UKUN and writing a grant proposal.. He told me about the past, current and future possibilities for UKUN. We also visited Bagamoyo District Hospital, where he introduced me to all ‘important’ staff.
UKUN clinic does rapid HIV testing with counselling that is free to anyone. Charles does this. There is only Charles there at the moment (and me) and Samira comes to clean in the mornings and deals also with small errands. We have to report monthly to Bagamoyo Hospital HIV centre (CTC) of how many people were tested (age, gender, HIV status) and how many were positive. Last month (Feb 2013) eighty people came to the UKUN clinic for the test and 4 of those were found HIV positive. If the person has a positive result they will be referred to CTC Bagamoyo Hospital to take a sample of blood and send it to the lab for kidney and liver function and CD4 count. That result will determine whether the patient will start ARVs (Antiretroviral Therapy). The recommendation is to start treatment if person’s CD4 is below the 350 count.
If it has been decided that the patient will go on ARV therapy he needs to arrive with a supporter to pick up his medication from the CTC. A supporter is usually any family member or otherwise close person to the patient. The supporter will be helping the patient with adherence to the therapy e.g. by giving reminders. Adherence to ARV therapy is vital for it to work and no adherence can have worse consequences than not taking the therapy at all. Patients have monthly appointment to be seen in CTC by a Doctor.
We finished writing a proposal for the grant for ‘Positive Action for Children Fund’, which has a deadline next week Tuesday. I was actually learning to write one as this was my first one ever but we managed to send it off on time. So my days were mainly spent in the office working 10-12 hour days!
Next week I will visit the home care clients as they are the main work I planned to come here to do!
I am looking forward to be working with UKUN in the upcoming weeks.
Abdullah comes every day actually spends most his days in our clinic. He was born with HIV and is 17 yrs now.
He doesn’t get food at home so we buy him what we can. He is very underweight! His parents died and his grandmother now and now he stays with his auntie but apparently she doesn't give food, says there s no space for him in the house and tried once to poison him!
There is big stigma there too! Abdullah is a very clever boy. We want to help him by giving him money (from our collected sponsor money) to start a small business. He used to share a business with a friend in the past so he has experience in this type of work. He wants to sell some food stuff in his street like ugali flour, sugar etc. He says that's where the good money is! We are going to find out now the costs from the wholesale.
He seemed very happy with this kind of support.
Sadly he has contracted TB since last weekend and we are going to hospital with him tomorrow to be trained to give injections to him daily for 54 for days so that way he doesn't need to go to hospital every day.
I have never given him money sometimes a small snack but his housing situation is also a disaster. He doesn't want me to have a meeting with his auntie and the chief of the street (as the procedure would be) because it will cause more conflict. We respect his wishes but again where is the way out? Just wait for him to get better first, but he already looked better today :-)
Maybe the small business could be a start to a better future. You should have seen how his face lit up!
We have launched the Fight for Life Campaign to raise funds for UKUN Center. The goal of the campaign is to raise enough funds to help UKUN sustain its operations and be able to provide the intended impact to its clients within the community.
We are posting a video link to the campaign which details the problem, the steps take towards the solution and how everyone would be able to help.
Please visit us at the URL below:
So far the campaign has been successful in raising enough funds to help the center pay towards its basic needs of rent, electricity, water, etc. but lots more remain to be fulfilled.
Progress for the quarter is as follows:
a- Receipt of a charitable donation of blood microscope from NHS system, UK
b- Receipt of medical supplies donation from various volunteer entities
c- Complete summer volunteer program with partner volunteer company CCS
d- Secure funds for project CURE Kits to be sent to Bagamoyo, Tanzania
e- Enroll with Healthcare Volunteer entity and advertise for volunteer placement
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http://www.eastafricaaid.com http://amap.eastafricaaidproject.org http://hvu.eastafricaaidproject.org http://ukun.eastafricaaidproject.org