The road (and village) that Motiar built

A long day of travelling not very far.  Where as yesterday's long journey took me half way across the country (literally), today's similar amount of travel time took me a little way out of the city and back.  Of course when I say a little way out of the city, that is really as the crow flies, and not factoring in the almost constant traffic jams.  We left at 6am to try and beat them, and didn't do too badly, we got there in around 3 hours, much better than the 5 it took to come back.

Today's trip was to the visit of Bandhabari, a leprosy village outside Dhaka.  The story of the village starts in the late '70s/early '80s with a group of leprosy patients from Dhaka who met in hospital at DBLM.  Although the stigma was even more severe then than it is today, and they know that coming back to Dhaka would not mean being reunited with their families, they decided to come back and stay together, and make a living begging.  At that time there really weren't any other options for people affected by leprosy, especially with some of the disabilites some of these patients already had.  So they moved back to Dhaka, and lived by begging, sleeping rough usually on station platforms, but people kept making them pay 'rent' for sleeping there, and one of the community, a very determined man called Motiar, decided that enough was enough. He went to see the leader of the Opposition to ask for some land to build their own village.  Some years later the Opposition became the government, and land was granted to the community.  Although it being for people affected by leprosy, it was far, far away from the city, in the middle of a forestry planation.  The army built them houses, a community hall and a couple of barns, and dug a well and put in a water pump, and they moved in.  They quickly realised that one important thing was missing - a road to connect their village to the 'main' road, a real problem for a community where many had serious disabilities.  Motiar got on the case, and in 2002 the road was built.  He is currently the chairman of the village, and continues his work trying to improve the lives of the inhabitants.   He is also a nominee for a Wellesley Bailey award, which marks significant contributions to improving the lives of people affected by leprosy.  No-one from Bangladesh has ever won before, so TLM Bangladesh is really hoping that he will.

The village is supported by The Leprosy Mission Bangladesh through their Dhaka Programme, with a number of children supported to attend school by either Dhaka Community Based Rehabilitation Project (CBRP), which is funded by the Scottish Government, or by an associated education project supported by donors from the Netherlands.  All the students were chosen to receive support by the community themselves.  The students academic marks are displayed for all to see in the community hall, and several of them are doing very well indeed - in fact the Scottish supported students are doing better!  To be fair that is probably because they have been in school longer, as the academic year had already started when the funding came in from the Netherlands.  But their parents are so happy and proud that they are studying, and will have many more opportunities than they did.  There is also some sewing training which started recently, and one man has been given support to start a cloth trading business, which is going well.  Sadly the first time he started the business, he broke his arm in an accident and has had to take out a further loan, but the project staff are confident he will pay it back well in time.  Afterwards, we had a wee tour of the village, and met some of the inhabitants, including Munnah, who, in spite of serious leprosy related complications over the years which have led to deformities in both of his feet and the amputation of his right hand due to an ulcer, remains a very positive man, with a great sense of humour, and has real hope for the future.

We then spent several hours working with the community on a funding application we are submitting to the UK Department for International Development.  We have had our concept note accepted, so are writing up the full application for an expansion to Dhaka CBRP to increase the support for livelihood development.  In project planning, it is vital that the community be the basis of any project, as without their ownership it will fail, so we were keen to get their input on what kinds of income generating activities they would be interested in learning and think could work in their unique context.  They are severely hampered by their distant location, but creative thinking is both essential and commonplace in communities like these, so we have come away with some very interesting ideas.  The children were quickly bored in such a long meeting, and had great fun playing outside with their parents' and grandparents' wheelchairs while the grown ups talked.

DBLM

Relapse Workshop

More travelling yesterday brought me to the north of Bangladesh, I flew into Saidpur, then we drove through Nilphamari city to Notkhana, the home of DBLM Hospital.  It was a quiet day, a wee walk, some photography and some warm hospitality, but today has been much busier.  I started off at devotions at the hospital, then went to a workshop currently being held for doctors from across TLM Bangladesh on dealing with relapse cases.

After a meeting, I was taken into Niphamari city to a clinic held weekly at the government hospital there.  Technically they have a room assigned, but it's pretty small, so most of the clinic was held outside in the yard.  On average they diagnose one or two new cases of leprosy here each week.  One of them today was a small boy, whose father had leprosy, and suffered severe complications and other health problems and sadly died.  I think the boy was only 6 or 7, which is unusually young to be develop leprosy, usually they see cases starting from around 12 years old.  This clinic is one of 24 clinics run by TLM staff in upazila government health complexes.

Physio technician testing sensation

 Upon my return to DBLM, I talked to one member of staff about the research projects going on here, as this area is particularly important for medical research due to high population and case detection, combined with fairly low population mobility, and is home to a number of important international research studies.  I then joined the doctors for lunch, before meeting a number of patients, and then getting a whistlestop tour of the hospital departments.  Once that finished, I spent more time in four areas - physiotherapy, the lab, assistive devices, where one very happy patient was having his first go with his new prosthesis, and the agriculture centre.  The physio technicians showed me some of their work.  I met a variety of staff during the day, many of them have been with TLM for upwards of 20 years, some always in DBLM, others have moved between projects, and I met two former staff who have now officially retired after over 30 years at DBLM, but are still around helping out, one an extremely experienced lab technician who is helping to train up his successors, and another former leprosy control officer who still helps with some of the research studies.  The hospital opened in 1977, and the first staff had a very difficult time, facing the same stigma that their patients faced, which makes their commitment to the patients all the more touching. 

First fitting of a new below the knee prosthesis

I also got a chance to see mycobacterium leprae through a microscope, a new patient had come in with a very severe case, the lab technician preparing the slide for me hadn't looked at it before, and his comment was 'oh wow!'.  Usually there are many fewer bacteria, and they are looking forward to getting a new microscope which shows the slides through a monitor, which will make it easier to see the cases with only one bacteria, which can sometimes be missed at present.  I also visited the assistive devices section, where they produce things like sandals, shoes and braces for people with leprosy or general disability, as well as prostheses.  I also saw the large TV where the women patients like to watch the soaps of an evening.  It as great to see the hospital farm, they have 12 cows which provide milk for the patients, which is nutritionally important, and they grow a variety of crops, and have two ponds with fish.  Some of this is for consumption and some for sale.  For example they grow a different kind of rice to the one usually eaten in the area, which sells for a higher price than the more common kind.

Weeding the rice - it takes skill to recognise grass from rice and remove the right one!

All in all a full day, and it's not over yet - I am having dinner with doctors, then going to the 'Fair of Happiness', a social evening with music and dancing for the patients held every Tuesday with singing and dancing, which is very popular.  It is organised by the hospital counsellor as part of the mental health provision in the hospital, as patients can have a hard time dealing with not just physical problems, disability and so on, but also stigma, which can lead to problems with depression, and this area of care is very important.  Should be a fun evening!  Tomorrow is a 12 hour (at least) drive back to Dhaka, stopping in at two projects en route.