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News Update for Nuffield Page of CPA Website
Renate, Liz and Joy have been in Kampala since the 4th January 2011 teaching and learning about cerebral palsy in Uganda. They are now nearing the end of their stay and have sent this interim report about their work.
After their return on 30th January 2011 we will post pictures taken during their time in Uganda. Just now the internet connection that is available to them is too slow to allow them to upload these.
Here is a short report from them: -
LIZ-
I'm nearing the end of a mission to find programmes in Uganda that offer support to families with children with cerebral palsy. I have been making contact with as many people as possible who work in this field, talking to them and finding out their ideas and needs. It seems there are a lot of good initiatives in Uganda and a few very committed therapists. Many have stressed the need for a more joined up approach and have requested some kind of stake holder meeting in order to network. There is also a need for specialist training at all levels.
RENATE-
The 8 day CP Africa workshop for community based rehabilitation volunteers was successfully completed on the 19th of January. The 16 motivated and lively participants were a mixture of family members who cared for a child with CP and a group of high school girls who were hoping to do some parent support work. Included were also a social worker and a primary school teacher who support some children with special needs. We were fortunate to have a 6 year old boy, Christopher, who was attending daily with his grandmother, his main carer. Christopher enjoyed this experience and was an ideal child to demonstrate all aspects of care. The participants learnt how to observe what he could do and the many areas he needed help. 4 other children with CP were available on some days and all the participants had opportunities for further experience and learning. They all had hands on practical teaching about feeding, caring and positioning. They all learnt how to motivate children to move and communicate through play and interaction. Towards the end of the workshop we had discussions and demonstrations around the type of equipment that could be helpful for children with CP which successfully led into the APT workshop which started on the 18th of January.
JOY-
Following on from the CP workshop the participants including Christopher have started to learn more about the equipment needed and how to make them from the cardboard technology. Christopher has been measured for a chair and his grandmother will be set up to make him a standing frame as well. The other participants have learnt how to take the child’s measurements and translate them into the measurements needed for the piece of equipment. So far they have made 6 basic stools and 3 CP chairs are underway. Christopher’s has a knee block to help him sit correctly where as Trevis's chair is reclined and has a curved back which has been a challenge for the students but they have coped wonderfully and the chairs are looking smart. The children will be coming back to have a final fitting before they take them home. The participants have also expressed a particular interest in toys - they learnt how useful they can be in Renate’s course, so we are planning to have a day of toy making at the beginning of next week just before the final presentations.
Christopher, age 6 years, CP quad
last day of the course
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We are pleased to announce that the Nuffield Foundation has granted funds to CPA to start a new programme in Uganda. The grant will cover the cost of sending 2 CPA trainers to Kampala to run a training programme for CBR workers and a further therapist who will undertake to identify a second district where CPA might hold training courses in the future but where for now we would like to base a research effort which will establish a baseline for the effectiveness of the present level of services. We would then seek further funding to carry out training and then measure the impact of that training against the baseline we established.
The three trainers will be travelling to Uganda in January 2011 and they will stay for 3 weeks.
Training for CBR Workers
Hope with Cerebral Palsy (HoCePa) http://hocepa.org/ is the name of the organisation who invited us to Uganda. It consists of a network of parents of CP children in the Jinja and 4 other districts of Uganda and its members are registering as many children as possible so that they can lobby the government and other NGOs to provide services for them. They recruit local volunteers to co-ordinate these groups of mothers and children. But now they would like them also to be able to help the families in carrying out treatment programmes and helping them with the daily handling of their children.
Our plan is to run a 3 week training course for no more than 16 participants. The first 7 training days will be devoted to participants learning about cerebral palsy, how it affects children and what can be done in the everyday management and handling of the children at home that will help them to develop functional skills and prevent such things as shortened muscles and dislocated joints. In the second part of the course (8 days) we will teach the same participants to make special chairs and standing frames from waste paper and cardboard. These pieces of equipment are essential to give children the opportunity to be more upright, to experience the sitting and standing position and to try to use their hands to feed themselves or play. Without such items the only safe place in which mothers can leave their children is lying on the floor.
We have made a preliminary plan for this training programme with the Chairman of the Board of HoCePa, Godfrey Muwonge. Mr Muwonge is negotiating for the venue for the course to be a vocational Secondary School called St Mbuga in Makindye, Kampala. This would have the advantage that the participants, who all live outside Kampala could stay in the student hostel attached to the school.
Renate Hallett, an experienced Bobath trained paediatric physiotherapist, who has already completed assignments for CPA in Malawi and Ghana has agreed to run the course for the volunteers.
We will also contact local specialist trained physiotherapists and occupational therapists who might be able to assist in the practical sessions of the training. This would be a good way not only to have extra help but to start working in partnership with Ugandan therapists.
Finally we have started a dialogue with COMBRA http://www.combra.org the Community Based Rehabilitation Alliance which is an indigenous NGO dedicated to the empowerment of people with disabilities based in Seeta-Mukono, Uganda. They are respected in many African countries for running very good general courses for CBR workers. We hope we can work together during the training course. The COMBRA representatives will ensure that our trainer can make the course material culturally and educationally appropriate for the participants and the representatives will learn extra knowledge and skills about cerebral palsy.
The next hurdle is to make sure that all these plans can be realised within the budget.
Research Programme Reconnaissance
Liz Hardinge is a paediatric physiotherapist with vast experience of working in Africa. She worked with CMS for many years in Rwanda setting up a service for children with CP based in the hospital in Gahini. From there she trained many CBR workers in the handling and management of CP and also facilitated for Rwandan physiotherapists to go to South Africa to attend the 8-week Bobath/Neuro-Developmental Therapy course in cerebral palsy. During her time in Rwanda she travelled frequently to Uganda to run short courses in different parts of the country and is familiar with key individuals and institutions connected with treatment for children with CP. Since leaving Rwanda Liz has completed assignments for CPA in Ghana and Zambia.
Liz has agreed to take on the task of identifying a district and programme that fits the criteria for setting up a future CPA research programme. She will also undertake to make contact with local therapists, government officials, therapy researchers in this country and Uganda to set the scene for the next step of finding funding for the research itself. |
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