Posted by: zdy1 | 3 June, 2010

First steps into the community

One thing that has been strange for me is to no longer get chance to see patients in their home environment (the hospital currently doesn’t have the available funds or staffing to enable that). However this last week gave me to opportunity to discover a bit more about disability in the community and the factors affecting rehabilitation.

A group of healthcare students from Sweden have been visiting and as six of them were physio/OT students, our department has been heavily involved. As a result my colleagues and I had to make several visits to a village area about 2 hours away where the students were doing a field study. This area was in a fantastic location, just on the edge of Queen Elizabeth National Park and we were told that the people we were visiting often had problems with their crops being destroyed by wild animals (this park has plenty of elephants, lions and baboons).

Our pre-visit to meet the patients involved me doing the driving into the areas. I was very grateful for my 4 wheel drive as I was directed up what would barely be called a footpath in the UK. We would drive as far as we could and then get out and walk the rest of the distance. Considering we were visiting people with disabilities who usually would not be able to afford transport, it was a very telling reminder of how isolated these people can be and why they may not be seen at the hospital.

We met 5 people with disabilities, all in different situations. All fantastic people who were dealing with their situation in amazing ways, all causing me (and my colleagues) a sense of frustration when you know how different interventions could help and there being no easy, quick fix, answers about how to make them accessible for them.

These were the people we met (names changed for confidentiality):
David & Andrew (brothers). David is 16 and has a foot deformity. It was caused by a inappropriate injection when he was 5, which lead to paralysis in his lower limb. Without any advice, aids or treatment he just carried on walking on it. It is now fixed so that he almost walks on the top part of his foot, an operation is a very risky option (high chance it may result in an amputation), he can’t get to school or to see his friends because of pain and a wheelchair is not an option in the environment where he lives.
Andrew is 18 and has a mental disorder caused by convulsions when he was an infant. He can’t look after himself, tends to hit the younger children when attempting to play and recently has started having some more convulsions. My colleagues explained that if he was not mobile it would be likely that he would have been kept unseen within the house or not have survived to live this long.

Peter is 5 and had Cerebral Malaria 3 years ago. He developed a left hemiplegia and can no longer use his hand. He can walk with a limp and is determined to join in the everyday tasks of the family. He tries to dig using his good hand and helps with untying the goats. He is going to school although taunted by the other children.

Mary is about 25 and has congenital deformities. She is unable to walk or use her legs. She moves by using two pieces of sacking. She lifts herself onto the front one and then moves the other piece forwards (to protect her clothes from the dirt floor), she has a wheelchair but it wouldn’t work around her home. She makes crafts, helps with the cooking and can use the toilet independantly thanks to the long drop style (floor level) type of latrines they have here. Of all the people we met she was the most content and well integrated, but even she expressed a desire to return to vocational school to learn a craft trade and told us she had not been to the nearby town for a year because of the stigma she got there.

Finally Mercy was a widow in her 40s with 3 children in their late teens. She developed Rheumatoid Arthritis 11 years ago and after a few month in hospital returned home without knowing hardly any information about her condition. Expecting it to get better she took to her bed and waited. 10 years later she now has many contractures, is unable to sit without assistance, no chance of standing again and only moves out of her bedroom when her children are home during the holidays.

As we worked with the Swedish students, we came up with many intervention ideas for all these patients. However the difficulty is that we have no rehabilitation service provision that can reach these people and them reaching us is practically and financially out of the question for most of them. It was difficult to drive away not being able to guarantee any follow up.

On a positive note travelling to and from these villages gave plenty of opportunities for discussion. As I said before there are no quick fixes however Mbarara University is working hard at looking at how to improve health services at a community level and the momentum is in the right direction. There are already volunteer community health workers in each of the villages we visited and training of these workers certainly seems a first step. In the meantime please pray for these families that we left behind.

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