New face India

This project went well.  I was in India for 2 weeks photographing patients for the project to create positive images for leprosy.  I worked with Lepra India who are linked to Lepra UK. They are really fired up about the project and gave us great organizational support with getting patients on board for the project and arranging our itinerary.  We had a new photographer, Tom Bradley who has done many leprosy photos. 

We spent a week out in the field visiting patients and seeing them work, one woman was harvesting cotton, another chopping wood.  We saw cobras out in the fields.  People lived in neat clean homes. In Hyderabad we visited patients in the Old City. I was reunited with one of my patients from 40 years ago, a tabla player. He still played for us accompanied by his 16 yr son singing.

Many patients had felt suicidal when they were diagnosed. An educated engineer man described how he felt unclean when diagnosed and self isolated himself from his wife. His sister, a senior bank manager has still not visited him since his diagnosis. 

The violence being perpetrated against women came into sharp focus. Husbands often visit for violence and taking their wives hard earned money. One women who lamented that her husband had left her was told by the male health team that she was better off without a violent partner.  The Indian arranged marriage system creates challenges because a diagnosis of leprosy can be used against a girl to prevent her marriage.  

We had excellent support from the organizations.  Lepra UK have a House of Lords event at the end of Jan and we shall have a small exhibition there and one in India in Feb.  It is great to have such organizational enthusiasm. I think the moniker “new face and positive images” creates a new fresh feel even though we then hear tough stories.  Getting ready for the Jan deadlines will keep us focused. 

Nov 2019

Diana's Year 2018

The year in brief:  I had a wonderful Himalayan experience walking in Ladakh. I enjoyed hosting friends in Brecon. I worked to improve the image of leprosy “New Face for Leprosy” in Ethiopia. I protested with 700 000 others against Brexit on the people’s march.

In August I walked for 10 days in Ladakh, a dry Himalayan area in India bordering Tibet and Pakistan. There were 16 people (19-66 yrs) on an organized trek. Ladakh has high dry mountains with beautiful rock formations.  Leh, the capital is at 3200m and we walked to above 4,000m. We drove up to the Khardung La pass, the worlds highest café and had lemon tea there. The rocks colours range from red to brown, beautiful to photograph.  The highest points are decorated with Buddhist prayer flags. We saw beautiful Bhuddist monasteries. The Indus starts up here and the only trees are along the river. We walked, camped and had interesting village homestays and talked to local people. The locals were harvesting and drying their apricots; which I brought home for my neighbours. They are Buddhist and so much less pushy than elsewhere in India and their social structures are kinder to women. 

My latest project is called “A new face for leprosy”.  When new leprosy patients go on the Internet they see only pictures of patients with no fingers and toes; whereas contemporary leprosy is a treatable infection. I tell new patients that they have a 21 st century curable infection and most will not develop disabilities. The NGO’s working in leprosy need these graphic images to raise money. My patients have overcome the stigma of leprosy and progressed with lives and careers.  We aim to capture this positive image of leprosy without stigma.  Myself, Saba Lambert one of my team based in Ethiopia and Alex Kumar, one of my DTMH students spent time in Ethiopia in Sept photographing and interviewing patients.  We plan an exhibition for World Leprosy Day on Jan 27 2019 when there is media interest in Leprosy. I celebrated the Ethiopia New year in Sept in Addis Ababa with candles, bonfires and fireworks in the central square. 

My friend Steve Walker was appointed to the tropical dermatology consultant post at Hospital for Tropical Diseases (HTD), he is the first black consultant at HTD, I was the first woman consultant in 1994.  Steve has worked with me on leprosy for many years and will be taking over the NHS leprosy work. I shall retire next June. I shall stay connected with leprosy work, a new project will be writing a book about leprosy based on patients’ stories. This will take me back to the places I have worked in the past.  I plan to cross Russia on the trans-Siberian train.

I have explored black culture this year after hearing my hero David Olusoga’s talk at Hay about his book “Black and British” about the under-recognised contribution black people have made to British history. I saw the play the” Secret Lives of Baba Segi’s Wives” (at The Arcola) by Lola Shoneyin, about a Nigerian man who takes more wives to mask his infertility whilst they find their own solutions. The audience included appreciative Nigerians enjoying the tale and the music and ready to dance.  The novel “Stay with me” captures the devastating effect infertility has on families and the lies that are told to mask it, by Ayobami Adebayo a 30 yr old Nigerian writer. 

My friend Iain Reddish died rapidly from bladder cancer in February. We were friends for 25 years, having met canvassing for the Labour party in Islington in 1992. He moved to Amsterdam and I visited him there often, also enjoying reconnecting with my Dutch roots. He was my first stop for political analysis and reflection. He had a humanist funeral In Holland with people speaking briefly about this colourful, warm, thoughtful man who wore amazing clothes.  I wrote an obituary, with friends, published in The Guardian on Apr 20^th.  His ex-partner (Alesha) and a Dutch resident had euthanasia in June and escaped a debilitating neurological illness. He is the second of my friends to die in Holland from euthanasia and in both cases it given them peaceful final days and they said goodbye to family and friends.  

Using my mother’s house in Brecon for hosting people has been a pleasure.  I love showing people around Brecon, walking in the Beacons and sharing good food beside the River Wye.  During the Hay Literary festival I had many guests including Julia and Steph from Paris, We heard Ben Zephaniah give a wonderful account of his life.   Neil Young looks after the garden. I shall make the house more mine with my own pictures and furnishings.

Gardening in the community project in Arlington square connects me with my neighbours.  The trees there had fine red autumnal colours. I have a new gardening project to nuture and improve, Union Square, the square closest to my home. It is smaller and has visitors with dogs and the beds lack colour.  We are now official and the Friends of Union Square and will be gardening there.

I enjoyed celebrating 70 years of the NHS and I took cakes from the Labour party to my local practice and the HTD. I worked for the NHS for 37 years, over half of its life.  I fear for the next 35 years. It is in a fragile state. The Owen Sheers poem about the NHS had scenes from Wales including Nevill Hall hospital, Abergavenny, captured the uniqueness of the institution and how important it is to ensure that it lasts another 70 years. The effects of 8 years of austerity are visible with poor social provision and rising homelessness. I despair over Brexit and the many ways it will harm the country.  I am frustrated by Jeremy Corbyn’s failure to give a clear opposition voice against Brexit. I was energized by the Anti-Brexit march, 700 000 people marched peaceably and good naturedly through central London. 

Cultural Highlights included hearing “The Rape of Lucretia” by Britten at the Arcola theatre, and seeing the play “ The Jungle “ about life in the camp at Calais which I saw with my cousin Jane and nephew Matthew. This highlighted the survivors tales of people living in the camp.  I had excellent weekends away with friends, enjoying concerts at Snape Maltings  and eating lobster in Suffolk with Rita. Irene Allen and I found the leprosy museum in Bergen with its pictures of 19 century patents very moving. I was walking in Haut Savoie with Les and Vera when France won the World cup ad shared French joy. I explored a volcanic lake in Tanzania with Saba.

Enjoy the Solstice and may 2019 be a good year.

https://www.theguardian.com/environment/2018/apr/15/iain-reddish-obituary

Art, Demonitisation, Life and Death in India Jan 2017

In India I enjoyed the work of Jitish Kallat and experienced Hindu and Christian death ceremonies for friends.

Delhi was chilly and foggy and I had to keep my fleece on most of the time. I stayed with jasjit in Haus Khaz. The house is now up for sale so this might have been my last visit there.  On Saturday evening I went with Kris and her son Arnav to the opening of a major exhibition at the Gallery of Modern Art. The exhibition was of work by Niitsh Killat a Mumbai based artist. He is interested in natural cycles of life and death, Indian food and environment. One of the most impressive works was a depiction of his father’s lunar calendar from birth to death with the moons represented with chapattis that were either full of half eaten to symbolize the waxing and waning of the moon done as photos. In other pics he captured the Indian environment and made an auto-rickshaw skeleton out of animal bones. He also had two stories about 1 rupees, one in black font about a desperately poor girl in West Bengal committing suicide because her mother did not have one rupee to give her for school food, in white font was a parallel tale by a telecoms company linking callers in different states for just one rupee. In another piece he used a series of 20 figures to capture the experience of going through a security check. There was a wonderful uninhibited energy and reinterpreting of the environment. Kris is a sculptor and was greeted warmly by several artists and by the many Delhi gallery owners at the exhibition. However her time for art is severely affected because she has a full time teaching job and a frail mother with dementia living at home; so she just promised pieces for future joint shows. Her son Arnav came to stay in Bevan st  about 10 yrs. ago , he is now 17 and young giant who wants to do geophysics. He was bright and interested in the art, which we all enjoyed.  The next day I went to a fascinating exhibition called past Time in Bikaner House which explored themes around memory, loss and partition. There were some fascinating sculptures, one of a twisting series of old film looped between two points, the top about 15 feet above the bottom.  it twisted like a knot of hair One of the most striking pieces was an ipad that had been loaded with text and digital images of people and places in either india or Pakistan. It conveyed the horrors of partition and one saw people aging in the process. There is no museum of partition even through the event involved 14 million people relocating and maybe 500000 dying.   It captured the sense of loss very eloquently.

I spent 3 days at the ENLIST meeting. We are making good progress with the protocol needed for the two trials on using Methotrexate to treat patients with ENL.  Our consortium has 8 partners of whom probably 7 will be involved in the trial, so our meeting included people from Ethiopia, Indonesia, Bangladesh and Nepal.  The meeting was hosted by the Indians and TLMI. Joydeepa was an excellent host and we stayed in a hotel close to the airport. The hotel had a grand marble staircase and beds with elaborate wooden headboards. But one could not charge electronic items overnight and we nearly had a disaster with over loaded plugs in our meeting room. We also had a trip out to the local mall called Ambience which was full of foreign brands, I could have stocked up in Marks and Spencer here in Delhi! I enjoyed browsing though a large Fab India outlet there. But Joy commented that the prices were too high for ordinary `Indians.  We had a fine Keralan meal for the group in the mall with excellent spicy prawns and fish curry.

I then went on to Hyderabad to visit the Blue peter clinic because we have a new head, Aparna who took over a few months ago.  Here I joined another consortium meeting but this time for Indian NGOs working on leprosy.  A group of research active Indian centres are joining together to do some joint work. Good to see. I stayed in another nice hotel and I had a good view out over the old part of Hyderabad.  However in this hotel the lift was not working one day and so i went down the fire staircase I found it locked between the 3 and 4 floors as a “security precaution”.  When I raised this with the managers they only dimmed perceived that it might be a problem in a fire or that they might be breaking the law. To my amazement the lock was put back on the next day.

When I was in Delhi I went to Indira Naths house to celebrate the first anniversary of her husband death.  This took place at home with a local pandit.  He lit a small fire in the living room with small pieces of sandal wood. We sat around and put herbs on the fire, the flames then shot up when he poured oil on the fire.  We passed a brass plate with an oil light and marigolds on it round and chanted.  About 20 people were there, mainly friends, their daughter is in Oxford. After the ceremony we eat typical Delhi food of okra, potatoes, dahl and fresh poori. I felt privileged to be there and to be part of the ceremony.  Death arrived again in Hyderabad; I had arranged to have supper with my friend Sujai with whom I have cooperated over 25 yrs. I knew that he was nursing his very frail elderly mother at home. I arrived to find that she had died and her corpse was in the centre of the room in a glass-lidded coffin. Decorated with wreaths.  Sujai’s sisters had come down and many friends and relatives from their Christian Church were there. He and I went upstairs and chatted whilst various funeral arrangements were put into place. it was strange to have different deaths at the beginiing and end of my stay. I had been supposed to fly back to London on Sunday but had to defer by a day, There must have been something in the air that made me stay an extra day. I was v touched to be part of the family that evening.     

I also experienced the effects of demonization. This measure was introduced by the modi governemt last November.  They made the old Rs 500 and 1000 illegal. People were able to bring notes in and change them. The aim of demonitisation is to move Indian towards being a cashless economy, reduce corruption, black money, counterfeiting and terrorism finance.  However there has been a severe shortage of the new Rs 2000 and RS 500 notes. People were also only able to take RS 2000 per day out of their bank accounts.  There has also been a sever shortage of notes. SO people queued for hours at ATMs and often came away empty handed.  The NGO who were hosting us offered to change money for us.  My friends have problems running their households.  The people who have been hits worst are the cash labourers and there has been a 40-50 job loss in small and medium enterprises.  People were able to pay larger amounts using etransactions.  But using pay tM which is the governments favoured operator attracts a transaction fee of 2.5%.  Just before New year the amount of money that one could take out was increased to RS 4200 per day. I think the economy will take a hit for the last two quarters, I suspect that people such as women and daily labourers will be most effected since they have no cushions for actions like these. It might have some good effects, it might reduce the lavish weddings that have become the normal in India. The government is already claiming that It has already reduced violence in Kashmir.  Tourists are also suffering, Steve tried several cashpoints all empty. 

I used uber cabs to travel round Delhi, there are now 5000 drivers and one feels much safer with details about the driver and being able to monitor travel. They are also much cheaper, but  they are also contributing to the congestion on the Delhi roads. And the drivers have to drive long hours to earn enough in the day.

Delhi Nov 2014: WHO meetings, friends and art galleries

In Delhi for the WHO meeting on global leprosy strategy and the 2015-2020 leprosy plans.

The Global Leprosy Programme had called about 30 people to Delhi, a mix of Indians, national programme managers and a few researchers for a meeting the next global leprosy strategy. We discussed a range of options. I hope that we shall be able to avoid the elimination target in future. The current plan is to divide countries into the big three “India, Brazil and Indonesia” with the largest numbers of leprosy patients and then a group B of countries with intermediate numbers and others with “Special situations.”

I enjoyed being in Delhi even though the winter is starting there. This means foggy days and cool nights. I visited the National Museum because my last visit was very rushed and I realized that there was a lot of good stuff there. I had a lovely time looking at the sculptures and miniatures. Fortunately there is an excellent audio guide given to the foreigners. Just as well because the labeling is very poor and gives little context to the beautiful stuff there.

My friends' children are now starting to get married. Raganadh and Kalyati. talked about their daughter Solanki"s wedding, they chose a Indian oil engineer husband living in Norway. They had about 1500 wedding guests in two sittings in Hyderabad, awesome. In my evening with Annamma John I heard about the preparations for her daughter’s wedding and we went shopping at Delhi Haat crafts centre and where Annamma bought presents for several different levels of the families. I bought some attractive pearl bangles and Kashmiri boxes to give to people at home.

I also had an excellent visit to the “Nature Bazaar” where people sell organic crafts from across north India. About 70 crafts people were exhibiting here with exhibits ranging from cloth to artwork and camel products. The quality of the work was impressive and better than most shops. I enjoyed browsing and bought soap from Aaorohi, silk scarves for £9 and birthday cards made from camel dung paper. The latter is part of a scheme for using camel products and so helping camel herders in Rajasthan find alternative work. The camel milk soap looked nice but I already had enough soap in my tiny suitcase. My Swedish friend Karin had a stall selling her organic cotton products (Songbird) that she has spent 6 years setting up. People admired the baby clothes and if one just said “how soft the cotton is “ and they immediately wanted to touch it and then bought items. A couple of French ladies came by doing Xmas shopping and they offered her a stall, at a French Mela in December.

I also read the proofs of Jasjit’s book about her mother’s life and death at 107 years and I commented on the medical aspects of the latter. The book captures mataji’s life well from growing up in the 1920s when she went to London to do a PhD, being a mother in the 30s and then retreating into a spiritual life for her last 20 years. The book will be published in January 2015 on Mataji’s birthday.

I always enjoyed being part of Jasjit’s household, she took me to a talk by a Chinamanda guru. I also walked the dogs in the park and enjoyed the garden.
When I was back in Delhi after the evaluation Bushan Kumar went one evening to a fabulous exhibition of “40 years of Indian Drawings” at the Indira Ghandhi art gallery. We arrived very late and had only 30 mins to see the collection. But the curator was curious about a foreigner who arrived late in an auto-rickshaw and took us round the exhibition, it was wonderful hearing her talk about the different piece and hugely enhanced them.

So I had a good balance of work and play in Delhi.

Evaluation Summary Session

Back in Delhi, hearing other states reports , discussing the recommendations.

It was interesting to be back in Delhi and to hear about other people’s experiences. Everyone gave their presentations from the states and common themes of undetected cases and no attention to the neurological aspects of leprosy, the medical colleges sadly provide a poor service from which patients default. The ASAHAS are also key people to the efforts in detecting cases and giving MDT. There is a huge urban/rural divide because there are no urban ASHAS. to fill in the health gaps in the urban areas. There has been a huge loss of leprosy clinical skills post integration. The people who are supposed to be running the leprosy service don't know about leprosy and have frequently been transferred from another service. Setting targets for elimination compounds this but this is a smaller part of the picture.

The hotel is uber luxurious, for lunch we had multi cuisine and one could nibble on Japanese sushi. Whilst I enjoyed it I felt uncomfortable and it did not seem a good use of WHO especially when they are short of epidemiologists in the country office.

We did small group work on aspects of the leprosy programme and Suarabh had an innovative analysis suggesting that we should just look at numbers of leprosy cases rather than prevalence bassed estimates people responded to this but I suspect that nothing will change. The quality of the group feedback was excellent and people had done good presentations, and a notable one on IEC was from a chap with a management background. We also discussed leprosy colonies, The health department doctors are offended by the colonies and talk of no more people going into them and closing them, actually the colonies are organic and all different. The national sample survey which would be very relevant to our evaluation is still not yet available and stuck on someone’s desk in the Department of Health, but it needs to be approved by parliament before it can be discussed with the contributors. It is now years since the sample survey was done and the suppression of results reflects badly on the programme.

The feedback meeting was huge with a full ballroom and the dias crowded with dignitaries. Krishnamurthy gave a long but not critical feedback and did not mention the absence of neurological examination. It also did not reflect the range of data presented on Tues from the states or the group work. Concern about the colonies was again expressed. It is possible that there will be new targets for leprosy, one is to detect all patients before disability. Saurabh and I had discussed this earlier in the week. It would be excellent of this could be the new target because it will circumvent the problem of having to detect fewer cases to be successful. I spoke to Sunil Anand afterwards who was disappointed at the lack of mention for a role for NGOs.

It was an interesting experience, I enjoyed being part of the team, It has been very sobering seeing the situation in Rajasthan and then getting the bigger picture for India. I feel that the loss of skills is associated with integration and that the skills from the vertical programme need to be revamped. I am hopeful that we might be able to have a new slogan and that would energise the programme.

Being a pilgrim and tourist

Visiting the Nathdwara Krishna temple and enjoying the Udaipur palace

We squeezed in a visit to a famous Krishna temple where an effigy of Krishna is uncovered to pilgrims 8 times a day so we sped across the Rajasthani countryside to reach the temple. We removed all leather items and went in without cameras, which was refreshing; every moment is being photographed here. I queued with a woman who came with her family and visited 8 times a day to cover all Krishna's waking, eating, cow-herding and sleeping moments when Krishna’s clothes are changed. She warned me that there would be “a dash” when the doors opened and so there was, we raced across a marble floor to stand in front of Krishna in blue, people cried out with ecstasy but I was unmoved. We then filed past a door where one could make a wish and then rejoined the men. I sensed that Ashok was disappointed by the crush, and I was glad that I had not made a special journey to see the effigy. The best part of the experience had been walking along the streets around the temple which were full of stalls selling interesting religious items.

After our work we visited Udaipur City Place, The city palace is awesome, a huge palace built of white marble and on the lake. The architecture is modeled on a Indian temple and the men's palace has weapons and courtyards with elaborate peacock mosaics and chittras with views over the lake; down in the zenana were silver treasures, the whole complex was an overwhelming collection of Indian Hindu wealth and culture, a contrast to the Muslim Mughal palaces in Delhi and Agra. We peeked around the hotel on the lake there and sat in the windows overlooking the lake. It was a light relief after our hard work in the field and we laughed and joked. We then watched sunset on the lake and the lights emerge on the uber expensive Lake Palace Hotel and the city. We ended our evening with a veggie meal in a garden where a Hindustani vocalist and tabla player played. Back in Jaipur spent the afternoon as a tourists visiting first the observatory and then the beautiful pink mahal

I was surprised by the rajasthani country side, I had expected desert but countryside I Typically N Indias, dry is but supporting small trees and greenery, cows and goats grazing. I also missed an opportunity to revise hindi, if I had revised my rusty Hindi before I l left I could have benefitted more from hearing the many conversations in the field in Hindi. I enjoyed many nice Rajasthani thalis.

Visiting Rajasthan with the National leprosy programme evaluation team

This post covers the 10 days I spent in Rajasthan in Nov 2014 doing the Indian Mid term national leprosy evaluation with other leprosy experts Rajasthan reports about 1000 new leprosy cases each year and so is regarded as low endemic in India and as having “eliminated leprosy as a public health problem”. Paradoxically if Rajasthan were a country it would be regarded as needing special input for its leprosy programme by WHO. We were in teams of 6 and other teams visited Andhra Pradesh, Assam, Haryana, Delhi and dadar Haveli, Harayana, Uttar Pradesh and Maharashtra. We had been briefed in Delhi and given a very detailed evaluation tool to asses different aspects of the programme. We were specifically told not to look for misdiagnosis.

I had interesting team members, Suarav Jain was the youngest and working with the WHO programme in Delhi on vector borne diseases and NTDS, he has worked on leprosy in Bihar, Surath Solanki is from Maharashtra and was previous head of health for Maharashtra, he is experienced in administration and health systems, Dr Thakur is also based at WHO and has worked in leprosy for years, he is an avid leaner, doing numerous online courses on his iPad. Dr Ashok Saxena is head of Dermatology at one of the big hospitals in Delhi and has experience with leprosy and yaws, the sixth member was Dr Vijaykumarn who worked for the Damien Foundation in South India and is now working part time for Lepra-India. Between us we covered a wide range of leprosy expertise. Ashok, Saurav and myself went to Udaipur whilst the other three went to Jodhpur. We had 10 hour train journeys in both directions and then a lot of travelling by vehicle around the beautiful Rajasthan countryside with rolling hills alternating with semi-arid conditions.

We visited a range of clinical and hospitals where leprosy patients were being treated so is a cross-sectional snap shot of leprosy work in Rajasthan. What we found was a small programme which is just ticking over, diagnosing and treating 1000 pts/yr and that there had been a serious loss of clinical skills in leprosy and a the programme was now low priority.

Pappu (32 yr), the patient we saw in a tiny rural PHC encapsulated many of the problems in the programme. The Primary Health Care Centre was a very poorly organised single room with a jumble of medicine boxes on the shelves. He had polio as a boy and then developed leprosy 18 years ago and developed neuropathic hands and feet with severe clawing of the hands and an ulcer on his foot, his leprosy had only been diagnosed this year and he had been started on leprosy MDT treatment, and so far too late. He had Borderline Tuberculoid leprosy years ago and these problems could have avoided with good disability management. it is a v poor reflection on the programme that he has such severe nerve damage. He had not had proper nerve assessment no-one cared about his nerve damage and he had not been told how to avoid trauma or even given dressings. Before we left someone had arranged for him to have a bandage for his foot.

This patient, Pappu then became the touchstone for our future discussions, how can we ensure that patients like him are detected sooner and have their disabilities managed to prevent further damage. We also saw a man with advanced Lepromatous Leprosy and nasal collapse in the same clinic and patients with undiagnosed erythema nodosum leprosum elsewhere. These patients show that there has been severe delay in diagnosis.

Visiting the Udaipur city leprosy clinic was depressing, the building was 180 years old and hidden behind the vaccine programmes building and with abandoned, decaying government vehicles there, one with branches growing through it. There were many Prevention of Disability posters clearly put up for our arrival and then used as wallpaper inside to cover the cracks. The staff here had not been trained in neurological assessment did not understand the WHO grading system for disability (including the District leprosy Officer). They had no records for how their MDT was being dispensed and were not using prednisolone to treat reactions and nerve damage. The day ended with a dramatic storm and water flooded down the walls and the posters peeled off, even though I had been assured 30 mins earlier that these old buildings were sound.

We also visited the medical school and district hospitals. They see lots of leprosy patients here with reactions and ENL but the records were poor and there was little communication with the leprosy programme. Elsewhere we found patients who did not have leprosy but were still on treatment.

Interviewing patients in the PHC was a positive experience because and they were obtaining their MDT close to home, often given by the Acredited Social Health Activist S. The ASHAS seemed bright and engaged, but they are also paid an incentive for diagnosing leprosy patients. When we gave feedback to the state officers and collectors they were very keen to promote health education about leprosy.

After 5 days in the field we met back in Jaipur. The Jodhpur team had similar experiences findings; they also visited a leprosy colony and found it functioning well and the inmates wanted better education for their children. We presented our account and recommendations to the state rural health mission chief medical man, which I did in English with Hindi comments from the other team members. He promised action especially on training, we then impressed a dynamic young Indian Administative Service man in charge of Information Education and Communication IEC) who immediately identified 3 lakh rupees in the education budget to be used for traditional and electronic IEC actives. Two goals for our team! We were a good team, Ashok and Vijay were good at information gathering, SJ and Thakur at analysis , me at presenting and Solanki at speaking the same language as the administrators. I hope that the budget will be really used for leprosy activity and not diverted elsewhere. We then went off for a celebratory lunch of Jaipuri chat and thalis with ladoos, hard dumplings instead of chapatis.

Other conversations about medicine and philosophy

We had other conversations during our long drives across the countryside
Saurav J and I had an interesting interlude when we visited the Vector borne disease state office, to discuss the mass campaign giving albendazole to treat and eradicate Soil Transmitted Helminths in Rajasthan, but they had sent their Albendazole request in far too late. They had requested syrup, easier to give but the drug has poor bioavailability in syrup and is not recommended by the vector programme. The Rajasthanis now had a surplus of syrup which they had given to other state centres to use. There is no Indian data the prevalence of helminth infections in India and so no way of assessing the effectiveness of this intervention. A national worm survey is being planned pre Mass eradication but there is a shortage of good lab technicians to do the survey. These are all interesting ethical and managerial programme complexities.

We also talked about the Indian Visceral Leishmanisis programme and patients are now being treated with a single high dose of Ambisome, 10mg/kg with a 95% cure rate. The case load is also coming down. Miltefosine is little used. The susceptibility of the Indian parasite to Ambisome is extraordinary and a benefit.
Ashok, is head of Dermatology at a teaching hosp in Delhi and has a faculty of about 35 and lamented that the younger dermatologists are not interested in general Dermatology, making money with cosmetic procedures is far more appealing. It is extraordinary to see a specialty being completely changed by money when skin problems are so common and often part of wider diseases. It will also be difficult to reverse this trend.

My Anglican priest godfather died whilst I was in Udaipur so I left flowers for him in a Hindu temple. We had many conversations about death and reincarnation and the Hindu philosophy on this. I remained unconvinced and comfortable with my atheism.

Team Lockwood at a Leprosy Conference in Le Corbusier’s City. (Mar 2014)

Participating in the IAL meeting in Chandigarh linked into leprosy science and politics and nutured my many friendships.

India has the largest national leprologist meeting so an invitation to speak at the Indian Association of Leprologists (IAL) meeting in Chandigarh, (Mar 2014) was irresistible. I brought my London team, Steve Walker, Saba Lambert (currently in Addis) and David Chandler an MSc student who did a project on the household costs of having ENL, a leprosy complication, in West Bengal. We had to leave our Sudanese colleague Omer Haroun in London because he could not get an Indian visa even though he spent 7 months in Mumbai last year doing new work on neuropathic pain. Team Lockwood stayed in the le Corbusier designed Punjab State Guest house, a 1950s building with a compact design, huge lobbies and mature cedar trees in the garden, we took morning walks by the lake. Our Punjabi hosts organized an excellent conference with talks and excellent open-air parties. The meeting was held in the Postgraduate Institute of Medical Education & Research (PGIMER), one of India’s leading medical institutes where the dermatologists remain committed to the work on leprosy initiated by Bhushan Kumar, a previous head of the department.

The programme included talks from leading Indian leprosy workers including Dr. Vishwa Mohan Katoch, overseas visitors and people working for leprosy in India- NGOs, National and state leprosy programmes. The challenging question of the numbers of leprosy patients in India was mentioned in many talks but more discussion was needed about how to assess the problem now. India achieved “elimination of leprosy as a public health problem in 2005” and this was achieved after patient numbers dropped precipitately between 2003 and 2007. I gave a talk based on my BMJ paper in which I, Vanaja Shetty and Gerson Penna showed that setting targets leads to innovative ways of reducing patient numbers. (1) There was agreement that there is now reduced capacity for diagnosis, highlighted by the talks by Dr. Krishnamurthy and Dr. Sundar Rao.

A new tension is developing because in some districts there will be enhanced case finding which means detecting more cases and this is not compatible with elimination at a district level. I was struck by the presentation of the dermatologist Archana Singal from Delhi who presented data on the numbers of children presenting to her hospital clinic, and showed a significant disability rate in these children indicating that they had been diagnosed late. The Delhi state leprosy officer disputed her data and maintained that there were low levels of children with disabilities in Delhi. The state leprosy officer in Odisha showed that there are districts with high rates, and this is compounded by a huge shortage of trained personnel for the leprosy programme posts. There were two key presenters missing, Dr. Barua from the WHO Leprosy Unit failed to attend, also absent was Dr. Kiran Katoch, she has been closely involved with the Indian national Leprosy sample survey. This was done in 2010 but the results have not yet been published, Dr. Vishwa Mohan Katoch (head of the Indian ICMR) assured us that Parliament would have to discuss the results first. We missed their talks and the opportunity to discuss their findings.

An early morning visit to the Nek Chand sculpture garden was a cultural reward. We were the first visitors and we wandered alone through Chand’s amazing grottos, sculptures and admired his work with figures decorated with glass bangles and abstracts made of old light fittings.
The Punjabis are great partiers and every evening there was an open-air party with abundant booze including Indian style mojitos, food and Punjabis disco dancing. I danced freely and found myself on the conference You Tube next day. When I looked at the clips with my friend Annamma she commented that it must be nice to be so free which is a sad reflection on the trappings of marriage and society.

After the conference I visited Bhushan Kumar and his wife Sarla at home. They have a well appointed house with interesting Indian art and effigies of Hindu gods. Both their children are working in the US, I met their California based IT son with easy openness and an American accent. Bhushan and Sarla retired over 10 years ago but continue to practice. Kumar sees about 10 patients a day in small clinic at the side of his house. It is a real contrast to his days as head of department but also a nice way of using ones medical skills in a low key way.

I was last in Chandigarh 20 years ago and on that visit I then went to visit the Manali valley and drove up to the Rohtang pass. This time I appreciated the lack of traffic in Chandigarh and the organization. I was sorry not to be able to stay on and visit the other le Corbusier buildings.
I travelled to and from Delhi on the fast Shatabdi express. Indian Rail has embraced electronic ticketing and many people showed the travelling ticket inspector their tickets on their smart phones.
I stayed with Jasjit Man Singh in Delhi, she treats me like a daughter welcoming me with green tea even at 3am when I arrived from the London flight and being part of her family enriches my visits. Last time I was there (May 2013) her mother aged 107 was dying; Jasjit had spent years looking after her mother at home. Jasjit is now freer, less sleep deprived and more relaxed, and also on her own spiritual journey. She is an established writer and has written a book about her mother’s life. She writes vividly about her mother‘s early life including a spell as a PhD student in London, marriage to an Army doctor and building an unusual Art Deco house in Haus Khaz. There were family tensions at the end of her life between one son wanting aggressive intervention and others for her to die quietly at home. I suspect that such disagreements are common where ever there are advanced medical facilities.

I left my iPad in Delhi, a disaster because I use it so much professionally. Fortunately I activated my network and within three weeks my iPad had returned to London via Budapest thanks to Leprosy Mission meeting there.

Saba commented on how happy I looked in India, I enjoy being there but it was especially nice having my team there. We all participated in the IAL meeting with different contributions and each took our own lessons from the conference. Many of my professional friends are in the IAL and I enjoyed the warmth of these friendships as well as meeting my close friends .I also met up with many friends and Sujai and Suman Jain from Hyderabad. Sujai was showing photos of his newly adopted daughter aged 6 weeks.

This visit encompassed the politics and science of leprosy, the architecture of Chandigarh and the warmth of friendship.

Lockwood DNJ, Shetty V, Person GO. Hazards of setting targets to eliminate disease: lessons from the leprosy elimination campaign BMJ 2014;348:g1136 doi: 10.1136/bmj.g1136 (Published 7 February 2014)

India Nov 2013: Leprosy and architecture in Hyderabad, Kolkata and Mumbai

An early morning walk opened up the history and architecture of Kolkata and was followed by the challenge of taking Yusuf Hamied, one of India’s richest men, to the leprosy project in Mumbai.

This visit started in Hyderabad where I attended the Blue Peter Research Advisory Committee; the research effort is dominated by work on TB and genetics and there is little clinical leprosy expertise in the organization. However a new bright keen young woman has been appointed, who I enjoyed talking to and whom I hope will stay. She and the physio have already collected some data on patients with ENL which was presented at the ILC meeting in Brussels in Sept. Dr Sundar Rao (age 76) is also now on his fifth post-retirement job and is advising Lepra-India on clinical research. We worked together on the Azalep study in the TLM hospitals so it was a pleasure to be planning research with him again. The Lepra India Board has recruited interesting women such as Geeta Thopal, who managed the building of Kolkata ‘s metro system, and Rukmini Rao a doctor working with tribal people and dalits in Rajasthan. I enjoy catching up with my old friends Sujai, Lavanya and Suman; they have daughters at university finishing degrees in dentistry and engineering respectively and so the next generation of Indian women are professionalizing. Suman gave me an Indian mobile, which made me feel very local, too local in fact because my answer-phone is in Telegu.

My next stop was Kolkata where I worked with my TLM team members Annamma John (research coordinator) and Pitchimani (research physio) on Azalep study report. I had an afternoon exploring Kolkata and visited the Victoria Museum, which I had previously avoided because it appears so colonial, with a High Victorian look that appeared to be exported straight from South Kensington. However inside is an anti colonial history of Kolkata from an Indian perspective and highlighting the negative impact of the division of Bengal in 1910 and important Bengali thinkers and activists.

We all explored the old city on an early morning walk with city guide Anup Saha who took us around temples, along lanes and into old buildings with an informed commentary. We admired the closed sewers that predated London’s sewers. We explored a Jain temple decorated with every type of tile across the centuries including a blue and white one of 17 century Dutch windmills, proof of the active trading from Europe through to China and showing how fashion can be seen even in temple tiles. The narrow lanes of the old residential area were quiet with few cars. I appreciated the elegant fronts of the 19 century houses with metal balconies where women were up their hanging out the washing and chatting. Shiva temples are popular here, because people can pray there without needing a priest, making life simpler and cheaper. Another old palace had mutated from being an audience hall into a ballroom with chandeliers and now had a small temple there. Kolkatan women were passing by in traditional white and pink saris. We had tea on the street in clay cups sold to us by a strong looking woman stall holder who was reading the newspaper very closely. Walking round is a refreshing contrast to sitting in the dense traffic jams that engulf Kolkata from mid morning. Tagore’s house is another oasis of calm and I imagined his life in the simply furnished rooms with his poems on the walls. The Chinese and Japanese governments had refurbished a suite of rooms apiece to commemorate his links with their countries, these rooms felt Japanese and Chinese and were air-conditioned and contrasted with the dusty rooms showing his Indian life where fans creaked away over poorly displayed items. Indian school children were visiting and seemed to be enthused by his life.

Kolkata feels gentler than other big cities but is a poor advertisement for prolonged socialist rule. Public services are poor, the trams are the oldest I’ve seen and the pavements are piled high with rubbish and goods. The taxis are also ancient Ambassador models and the internet seems undeveloped in comparison with Delhi and Hyderabad. I had been busy reading before my visit and Amit Chaudhuri’s book “Two Years in Kolkata” describes the city and its residents in over lengthy detail whilst from Jhumpa Lahiri’s book “The Lowland” I could easily imagine the city in the 1960s and the parents home in Tollygunge. Since my visit I have read Shanker’s novel Chowringhee and then imagined hotel life in Kolkatans in the 1970s.

In Mumbai I stayed in the upmarket Four Seasons Hotel, courtesy of Cipla and enjoyed the 27th floor roof top bar with breathtaking views of the city. I balanced myself with swims and yoga sessions. I took Yusuf Hamied, the last CEO of Cipla the Indian drugs manufacturer and one of India’s richest men to visit the Bombay Leprosy Project. We went first to a slum are where the leprosy workers were doing case finding, Yusuf was horrified by the standing water and the roaming dogs in the slum and was surprised that people could be so passive about their situation. We then took him to the project headquarters in Dharavi (Asia’s biggest slum) here he met patients and Drs Pai and Hawal talked about the challenges of doing leprosy work in India, the perception that elimination of leprosy as a public health problem has ended the leprosy problem, the management of reactions. He stayed 4 hours and I think that we captured his attention. I met him again before I left and he has offered Cipla support for some aspects of leprosy work, including providing some of the drugs needed for leprosy work, and supporting meetings in India. Whilst we were in the slum he asked me if I got depressed by seeing this situation. I counter that feeling by working in leprosy.

Whilst in Mumbai I also walked out to the Haji Ali mosque, a tiny mosque on a spit of land projecting out into the bay. This has been on my “to do list in Mumbai” for 25 years. Formerly one need a stack of one paisa coins to give the beggars who line the causeway but they are now outnumbered by the opportunities for shopping; I bought some flowers that I put down at the mosque in memory of my sister Laura. The mosque is a lovely small building with arches and a dome and surrounded by sea and I watched the sunset there.

On my last evening in Mumbai Jehanghir Sorabjhee and I had supper with a literary couple, Kabir and his wife Tulsi. They were entertaining Ian Jack who was promoting his book Mossufil Junction at Indian literary festivals. We had a fine evening talking about books and Indian culture. Sachin Tendulkar had played in his last test match whilst we were there. The Indian crowd poured out their adulation. Ian later described these Indian emotions as “India’s Diana moment” when a country is gripped by a collective emotion.

These two weeks were full of new work experiences; I enjoyed Hyderabad, Kolkata and Mumbai in different ways and my friends showed me different aspects of each city.

References
Ian Jack. Mossufil Junction Indian Encounters 1977-2012. Penguin India 2013
Sankar. Chowringhee. Dey’s Publishig Kokata 1962, translated From Bengali Arunava Sinha. Published Penguin India 2007
Amit Chaudhuri..Two Years in Calcutta
Jhumpa Lahiri. The Lowland 2013