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Ryggmargsbrokk- og
hydrocephalusforeningen

Bygdinvegen 1783
2943 Rogne
Telefon: 41 00 82 57
E-post: post@ryggmargsbrokk.org

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2015: Malawi

2015: Malawi

Visit  Malawi 31/10-3/11

Support group

We spent a whole day with the group.

16 parents and 5 youth meet in the morning. 2015 is the first year with their own budget. The former chair, Rosemin, has been abroad the first part of the year, and the activities have been affected of that.  The present chair, Hanna, is a very competent leader, and the group arranged the neuro-day in a very impressing way according to Emma. We got the impression that the group has some resource persons and they are working well. The director of PODCAM attended the event, and she gave a speach. The press was around, and we could read about it in the newspaper. The youth group attended the neuro-day where they performed a play about witchcraft. They explained how people should seek help at the hospital insted of going to the witchdoctor. During our meeting some medical questions came up; about hydrocephalus and pressure sours. Questions about pregnacy,  and folic acid.

The youthgroup has a very good leader, a boy at 17 years with HC (Hannas son), and they are about 11 persons.

There is some communication problems between Rosemin and Hanna.They told us openly that they had problems both within the board and with the hospital.  We discussed it the four of us, and we tryed to sort out how to improve collaboration. We gave advice in how to work in the board, charing the work with clear and defined responsibility. Look for the strength in each person and build on that. We hope they can find their way.  In the communication with the hospital we also gave some advice.

Home visits and hospital

On Monday we came on two home visits together with Elfrida, Rosemin and Emma. Elfrida is doing homevisitsas always, but her role and the responsible lines are unclear. She is payed by CURE as a HC coordinator, but her instructions are a bit unclear to us. She is working as she always have, but she don`t report to anybody from the homevisits to persons with SB. We meet Charles Howard at the workshop in Lusaka. He was on his way to Malawi to discuss different matters.

The Hospital.

In Queen Elisabeth they have startet the construction of a new pediatric surgical unit funded by «Raising Malawi» in Los Angeles. In conection with that Eric Borgstein was in Norway to apply for a cooperation with Oslo University Hospital in a exchange program funded by the peace corps under the foreign minister. Another exchange program in neurosurgery has been running for 18 mounts already. We visited the neurosergical HDU together with Cecilie Johansen (a norwegian nurse who are the coordinator of the program).

There are communication problems within the hospital also. We could not see the clear reason during our visit last year. Patric Kamalo (or his clinical offiser) are doing the HC in the new theater. Emma and Eric are doing the closeure of the SB children in another theater. This seems to work well. In other countries it`s normal that the neurosergion do both the shunting/ETV and the closure. According to Cecilie the divide should be like it is now. Some other Norwegian persons we meet (surgion and nurse) gives Eric very good references.

We went together with Emma trough the different pediatric wards. They hav many children with SB, and they are working hard to awoid infected wounds after surgery. They have made a A4 poster to put on each bed telling how to place the child. A very good idea!

Emma and Dorothy have started to network with MACHOA. They don`t have the resourses to do outreach from the hospital for follow up. That`s why that Emma has started to identify nurses to do follow up in the places where they have clinical officers doing the shunting. It`s a good way to reach out to people in the district. They need the team of a CO and a nurse supporting each other. Without them it`s noting trough out in the country.     

Guesthouse

We discussed the guesthouse with Eric and Emma. They say there are no patient waiting for treatmen that don`t need to stay in the wardt. If they are around, they need to be seen in the hospital. Some stories tells something els. But they sees the need for a place to stay for the supportgroup, and agreed that it`s wise to rent a place. But they don`t want to be responsible for the project, which we can understand. The supportgroup (Hanna and Rosemin) will keep looking for a house to rent.  

Report from Livingstone.

After the workshop in Lusaka we went to Livingstone where we had an appointment with the supportgroup there. The OT together with a fysio therapist picked us up at the hotel. The meeting took place in the office at CBR Zambian Support program. The funders are NAD and NFU from Atlas Alliance, and it`s in cooperation with the Zambian goverment. They have a CBR program in three districts in the area, and it started in 2011. The senior advisor is Alick Nyirenda, cbrzambia@yahoo.com

The board in the parentgroup consists of both parents and professionals. They started in 2008, and 7 adults, 4 youngsters and 1 child attended the meeting. In addition several proffesionals attended. They don`t have any budget except a litle from Lumbwe. They don`t get shunts and cateters from IF?

We did not see any child with SB, and they told us that they have only 4 children with the condition in the group. Where are the rest?

We asked to visit the hospital after the meeting. They have a neurosurgion just arrived from Ukraina; Dr. Alexander. They have two general surgions; Dr. Nthele and Dr. Mailani(?). We visited the rehabilitation department. The building  was under reconstruction and completly emty except from the employees. This had been the situation for 2 mounts. They did some homevisits, and that handled emergensisi. The building had a nice ortopedical workshop, but it was also emty.

A team from the hospital do outreach clinc in 5 different locations in the area. They do not see SB during these visits eighter.        

 

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