Last week Barbara and I were at the Royal College of General Practitioners Annual Conference in Harrogate. What I noticed most on reflection was that, despite the pressure that the profession is under at present, many people were expressing a huge passion for social justice. In fact the programme seemed set up to deliver this, though no doubt my impression was increased by the parallel sessions I chose to attend. From education director Mark Purves struggling to get more doctors to underserved areas to Camila Batmanghelijh describing the desperate lives of children surrounded by violence and neglect, as well as many other speakers, for me a theme emerged. I suppose I could summarise it by saying that as GPs we have a unique responsibility, to use our knowledge, skills and commitment to serve those who most need us. It's not enough to respond to those who present their needs to us; they are sometimes the ones who have least need. We should find ways to seek out the children at risk, the frail with multiple long term conditions, the victims of domestic violence, who may all lack the ability to seek help for themselves. We can't take refuge in what was repeatedly referred to as "box-ticking", although this may represent a sort of quality to the extent that it is evidence-based. Instead we have to listen to the person in front of us, and seek to bring our expertise to bear on their problems and arrive at a shared solution in partnership with others. We knew this already but it was good to be so eloquently reminded of our vocation.
With two weeks to go to our departure for Uganda, today I have been busy preparing a short presentation I will make on the 19th October, to the 30th anniversary meeting of Global Care in Coventry. Doing this has reminded me again of last year's experiences and how I felt meeting the children in Uganda who experience such challenges. I hope I will do them justice in my talk and that we can help extend the work in breadth and depth during our visit.

Preparing for next trip

It's now just three weeks to our departure date for the next trip to Uganda to visit Global Care projects.
There's much to prepare; planning the finer details of the trip, sorting out antimalarials and health precautions, money, transport. We've assembled a lot of toys and games and other things to give to the teams in Rukungiri and Soroti and we are hoping our friends can contribute a few more items we would like to take. Thanks to everyone who has supported us so far.
Our purpose is to encourage the teams in Rukungiri and Soroti, and to assist in any way we can with their work. The centre in Rukungiri is much newer and has some new team members we haven't met, so we are looking forward to seeing them. We hope to work with them to enhance their work with vulnerable children, particularly those with disabilities and those whose lives are impacted by HIV.
However you never know quite how things will work out and we need to be flexible as well as determined, maybe there are other things we need to do. Perhaps we will be used in ways we don't expect or even fully understand. At least we hope our visit will be a blessing to those we meet and leave a positive impression on the work.
In Soroti we have some good friends and we very much look forward to our fellowship with them. Also we will visit the new disability centre and the support groups that have started since last summer. We hope to do a little tourism as well during our visit.
So you can see there is a mixture of pleasant anticipation with a little anxiety and a sense of responsibility to make sure we do what we can to make the trip a success. It's a big investment of time money and energy for us, so we want it to be great!

It's over a month now since I submitted my dissertation, and in two weeks we will have the results of the marking process. Time for some initial reflections on the outcome of all that study and work.
I continue to support and advise on the disability project at Global Care Soroti: the day centre has started receiving clients and I look forward to hearing about it from Paul Rowell after his recent visit there. I hope he will have some advice for me on how to disseminate the learning from the project in the Soroti area.
I have also just advised PHASE Nepal about a training day on disability for their community health workers there, which I was very pleased to be asked to do.
People ask, am I going to use the degree to seek work overseas? Unlike my fellow students, I am not starting my career but in the latter stages of it. I still have a dream that one day I will find a way to make a bigger contribution in healthcare in Africa, but I think I have to be a little patient still. However I can advise, try to spread what I have learned and continue to inform myself on development issues, particularly as they affect people with disabilities. In the meantime I am sorting out some sessions in an interesting GP practice in Barnsley, with a high quotient of international clients as well as asylum seekers and also many drug users, which suits my skills and interests well.
I am missing the buzz and stimulus of studying, and the company of my fellow students, but have plenty to get on with at the moment, and am looking forward to a little holiday and remembering what it is to relax!
Thanks for reading,

Time to go

Just a short entry today as we prepare for departure.
The weekend was fairly restful. This was partly enforced by a minor illness on my part. However on Sunday we went to church with our friends in the locality and jumped and sang as best we could in Ateso with the rest. Later in the afternoon we went for a walk into the countryside and enjoyed a little peace and quiet. We visited Sam on the way back and I hung out for a while with him and his friends while Barbara sat with Lucy on the porch. We were given a gift of some eggs, which later proved very tasty.
Yesterday, sadly between funerals, we met with the Global Care managers to discuss their new disability project. One big change that has come about as a result of the research was that they were able to include the chairwoman and treasurer of the new Pamba Disability Action Group in the discussion and show that their input was valued now and in the future. We chose some priority actions to recommend for Global Care Soroti, in addition to the day care centre already planned, should funds permit, as well as advising on how the centre should operate. To me this feels like an excellent conclusion to this arm of my programme. I wanted to upload some photos of the team but the internet connection is too slow today.
Other achievements are the two disability action groups already set up and the impetus to start more, contacts and networks developed and strengthened, and people with disability and carers informed, encouraged and empowered. They tell me they have been given some hope that through their collective efforts as well as what support they can attract from state and NGOs including Global Care, they can make a big difference for themselves and the children.
Today after a last trip to the market and shopping in town, I am clearing up my office and making sure I have all the relevant materials I need for writing it up. I hope it makes some sort of sense when I get home as my brain has decided to join the primary school teachers on strike today. We will leave for Kampala and Entebbe early tomorrow morning and should be home mid-morning on Thursday after about 30 hours' travelling. I anticipate a joyful reunion with my two sons who are at home and, shortly after, with my bed.

A school for the blind

I wasn’t sure I wanted to go to the school for blind children at Madera. Probably because I knew it would be an uncomfortable experience. It is quite near, in Soroti, so eventually I decided to try to arrange a visit, as without it our study of childhood disability would be incomplete. Attempts to make an appointment by telephone failed so I went over to see if one could be arranged, after spending an enjoyable morning and early afternoon with sponsored children who were visiting the site to collect gifts chosen to help them and their families. And in another first I got to referee a girls’ football match. 

See Barbara’s blog as she is in charge of fun.

I was feeling a bit rusty on motorcycling so Tom and I agreed he would drive there and I would drive back. I was certainly much more relaxed driving myself at 40 kph than when a passenger, even though my increased security was undoubtedly illusory.

We received a warm welcome from the charming Sister who is the headmistress, and she said it was fine to talk to her and to some children, when I explained the purpose of the visit and the research. This Catholic boarding school was founded in 1955 so some generations of children have passed through. It takes primary and secondary students from all of Uganda so it uses English as the medium of teaching. Sister told us of the problems for the school due to the fact that few parents can afford the fees. She sees how poor they are and feels ashamed to send them away so she tries to raise funds where she can. Nevertheless a proportion of children start each term late as their families are trying to get the cash together, and some drop out. Children who complete their education here often go on to University and to employment. Without it, they would be helpless.

We walked with her round the school; lessons had finished and there was a relaxed atmosphere. The children were assembling for choir practice as they were to lead prayers in church the next day. We were lucky enough to be welcomed by them in song, accompanied by drums and piano accordion, and I said the usual few words of greeting and thanks in reply. They probably enjoy the platitudes spoken by visitors as much as I did in my school days so I made it brief.

Then she selected some “volunteers” to speak to us. We sat in a room not far away from the choir and chairs were brought. The children learn their way around the school and some are partially sighted and help guide the others, so it was not at all chaotic. We introduced ourselves and got consent for the research. I asked them to tell stories about their experiences as blind children in their families and communities, and then to talk about how they saw their future. What followed would take a few pages of blog. Mostly their immediate families were supportive, though in some cases only the mothers; once again fathers sometimes failed to support their children and some siblings could be hostile. Some said that they were only sent to school after the sighted ones were sorted out, if there was any money left. (Rather like me leaving the blind kids to the end of the study, as an afterthought almost.) One girl had a harrowing tale of abuse from her father’s family and her stepfamily, including assaults and attempted poisonings. A theme that emerged from a few of them was that there is a kind of double-bind that they face. If they don’t perform tasks because they are blind, they are called useless. But if they do go to the shops for something, or work in the fields, they are accused of faking the blindness to gain support. It seems people can’t accept that a blind person can do many things as well as a sighted one. Another difficulty was getting to and from school on the bus at the beginning and end of term. Conductors cannot always be relied on to tell them their stop and fellow passengers sometimes tell them all their baggage is unloaded when this is not the case. They usually take a bicycle taxi to school from the bus station.

Their ambitions were similar to those of other teenagers; to complete their schooling, go on to University, become a teacher, a lecturer, a nurse or a Gospel singer. One boy voiced his fear that the funding would fail and he would not be able to learn any more. Feeling moved and troubled by these kids’ courage and the doubt that clouds their futures, we took our leave and wished them success

Pamba disability action group

This morning we had the meeting to set up the Pamba Disability Action group. It was due to start at 10.30 and by 11 I had thought of abandoning it as so few people had turned up. We were waiting under the mango tree in the Pentecostal church grounds, while a noisy prayer meeting was going on in the actual church building. However by 11.30 there were plenty of people. I had wanted the locals to facilitate their own meeting but they didn't really seem to know how to proceed so I had to lead them to some extent by proposing the agenda and asking questions about how the meeting should proceed. We started by everyone stating their reasons for being present and hopes for the meeting. There was a good age range and young and older people with various disabilities and carers were all represented. One 7-yr old girl had no feet and walked in wearing home made bootees on her stumps. The family could not afford proper prosthetics for her. She was also deaf or at least so hard of hearing she had not learned to speak but had not had a formal hearing test. Her mother had made up a rudimentary sign language but this was no use for communicating with anyone else and was very limited. As things stand, she has no chance of going to school as the local one can't teach her and the school for the deaf is too expensive. I tried to link her mother with the local teachers of sign language, though it is already late to start learning. Ignorance is such an enemy here; even when help is available, people don't know they need it.
The people had lots of good ideas about what the group could do for them, and not too many relied on donor funding, so we could define the purpose and the name was agreed. Then we decided on the committee structure and conducted an election for officers and committee members. I did advise them against nominating the Pastor, lovely man though he is, as the board needs to consist of people with disability and carers. They included young people on the board, one of whom is the token male, but I think he will manage.
Everyone was very happy and grateful for the initiative and the first meeting is scheduled for 10 days' time. There are a few people around who will provide support and guidance as it gets started, so I am very hopeful that it will achieve a lot.
Tom told me that the group in Atiira that started less than two weeks ago now has over 100 paid-up members, is finalising its constitution, and plans to use the collected funds to act as a credit union that can provide loans to members for income-generating schemes. All power to them!

A feedback session

I was quite nervous by Tuesday morning and preparations started early. I cycled to town to get money to pay the sign language interpreter then helped the staff and skills centre girls to put up the gazebo (this reminded me of Hope House church back home), set out chairs for the meeting and make sure there was a ramp for wheelchair access. Guests and participants gradually arrived and we started only half an hour late. I was pleased that the Honourable district council representative for people with disability came on his trike and was keen to participate, along with other notables, disability activists and community leaders and some of the Global Care team. Tom helped me present the results. However the highlights were undoubtedly the moving and dignified testimonies from the research subjects I invited to speak. I introduced a young woman, saying I wanted them to hear from her, because her disability is visible, but her spirit was not. She spoke of how much abuse she suffered from her peers, how she had to fight to get her family to support her education and training, how girls with disability were treated by boys, and how even health care providers discriminated against people like her. She was asked by another person with disability in the audience; what were her ambitions? They encouraged her to pursue her dreams. She was followed by the mother of a child with severe multiple disabilities who is caring for him unsupported by anyone since the child’s father died when the baby was a week old. He can only make slight movements of his head and hands, and does not speak, but his eyes tell you that he likes to see people and try to interact. How she survives is a mystery, remember social security is practically non-existent. Again some of the influential people there had good advice and promises of support for her, but they got the message that people in these circumstances need a lot more help than they are getting. I had planned to highlight key messages at the end, but those present contributed a series of rousing speeches which made this unnecessary. After the meeting ended, several guests said how good and helpful it had been and that they thought that changes could result. I really hope so, and it is largely up to those people present to create the environment in which change can happen. I have some odd feelings about this situation which I am still trying to understand. I think it is to do with handing over control of something I have lived with for quite some time.

After the meeting and a short time to relax over lunch with some guests, I tried to settle down to write up my thoughts on the day. However instead I ended up driving to town taking the daughter of a staff member to the doctor as everyone was worried about her health. At least I could go shopping in the market while we waited for the test results. One of the stall holders asked me “where is Madame?” as it is so odd to have a man doing the food shopping. I will have to make sure she is with me next time. I ended the day writing my notes and blog as a thunderstorm grew and rain started, while the power went off and on.