Sunday 30 November 2014
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.
Friday 21 November 2014
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.
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.
Sunday 16 November 2014
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.
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.
Saturday 15 November 2014
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.
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.
Subscribe to:
Posts (Atom)