Third and Fourth week in India

So we said we’d give weekly updates…make that biweekly it seems. Oops!

In our third week came a great opportunity. With the help of Miss Sheela Daniel – a fantastic dermatologist at Karigiri – Kristina and I (along with Natasha a fellow elective colleague) are writing some case reports on interesting cases that Miss Sheela has seen. Both cases are rarities – one a new diagnosis of leprosy for a man in his eighties, and the other a man with oral lesions of leprosy. Hopefully we will be able to get these published in journals which would be fantastic – we will keep you posted.

Writing, ciphering through notes and researching for the case reports has taken up most of our time but we have still been busy clinically.

[Catriona] I have spent more time with Aunty Valsa seeing the impact that leprosy has on a person’s psyche. But in these last two weeks I have also seen the impact leprosy has in a wider context in terms of marriage opportunities and livelihood. Many patients believe that they have fewer marriage opportunities. For example I have seen two patients who’s wives have left them after their diagnosis disclosure. Aunty Valsa believes these barriers are most often self-perceived rather than external. She wishes to do more research to see if this is the case.

Valsa and I also spoke about the difficulties around leprosy diagnosis disclosure. HIV/AIDs have full guidance when it comes to disclosure and laws protecting people from discrimination based on their diagnosis. Both are not the case with leprosy. Valsa advises patients to tell their family, and offers (similarly to HIV cases) to invite contacts for testing, without disclosing the diagnosis. Many still do not as the stigma is too high. She speaks of leprosy as a ‘neglected tropical disease’ – a phrase echoed in the literature we are reading. This is because under WHO definitions leprosy in India is described to have been eliminated in India. This term actually means that there are under 1 in 10,000 for every local population cluster in India but it is still around. A disease can be described to be eradicated when there are NO cases left. Misunderstanding of these terms has led to reductions in government funding for leprosy projects, which has a detrimental impact on places such as Karigiri and Shanthigramam.

Finally, during this last week I had some psychiatric teaching at Karigiri. In it they were teaching fellow students – counselling, psychology and nursing-  how to implement health education in rural communities. For example how to teach young girls to avoid molestation using ‘good touch – bad touch’ examples. A good touch is ‘pats on the back’ ‘hand-shaking’ whereas a bad touch is any touch that makes you feel uncomfortable, particularly under where the cloth covers on a doll.

They were also doing health education in terms of substance misuse. Life is not valued in the same way in these rural communities. For instance if you say by doing this you will hurt/kill yourself it is unlikely to change the behaviour. Therefore teaching was going to involve a comparison between ‘substance misuse and unhappiness’ and ‘no substance misuse and happiness’, and focus on the effect on the rest of the family rather than the individual. This is a further way that Karigiri helps, not just people with leprosy but also rural communities.

[Kristina]

I have really enjoyed working with anaesthetics at CMC for the first half of the week with my supervisor consultant, Dr Serina Salins, whose parents have set up a leprosy mission hospital with CMC (Velemegna Good News Society Hospital – cmcvelloremissions.org/index.php/mission-network/item/90-velemegna-good-news-society-hospital).

I was mainly based in the women and children’s operating theatre and was intrigued to see the differences in anaesthesia management of children in comparison to the management of adults. Where possible (mainly in adults), putting the patient fully asleep was avoided as this costs the patients more money and more complications can arise, leading to longer hospital stays. The body which would be operated on would be numbed and the patient would be awake in the surgery. Here the anaesthetist and nurses play a huge role in reducing any anxieties.

Reducing cost was a common theme throughout the elective, something which we do not have to think of with the NHS in England. In CMC Karigiri, 2 young children (both under 10-years-old) presented to the leprosy clinic with skin patches akin to leprosy. Although, leprosy is on the minds of the clinician here, leprosy is a diagnosis of exclusion and other conditions should be ruled out first. This meant that a skin biopsy needs to be taken to look for the M. leprae bacteria. Leprosy is a disease linked with poverty and these children were from different rural communities and their families had little money. Diagnosis of a condition is not a free unlike the antibiotic treatment for leprosy. These biopsies were therefore done with the child awake and with a small amount of local anaesthetic injected into the superficial skin of the area to be excised. Much work by the nurse, myself and Natasha (elective colleague) to help calm one of the children down as the operation occurred. He was very brave and hardly wriggled (which, of course, can be a problem). I regretted not having any stickers for bravery to give him. It is interesting from a medical point of view, how the feeling of pain increases when you are anxious because although it was obvious to us that the boy could not feel the operation happening, even the numbness gave him the feeling of pain.

To close the wound, normal sewing thread, which had been sterilised, was used. Unfortunately, due to the nature of the material, a scar would be left. This was initially alarming as I was used to very specific suturing materials being used, and I had never thought how much more expensive these were. Due to the stigma of leprosy, the biopsy of the young girl was refused by the mother due to worries of extra markings on her daughter’s skin, which would reduce her chances of marriage in later life.

During the leprosy clinics, I quickly realised that chronic pain is not a huge complaint amongst these patients but reduced feeling in the extremities, and deformities are. Neuropathic pain can present in many different ways in leprosy, e.g. pulling of the limbs, feeling of insects underneath the skin, shooting pains down the limbs, constant dull aches from the numbness etc. Even after the leprosy has been cured, these feeling remain. It is interesting, after talking to Aunty Valsa, that the word germs is translated into Tamil as insects. Therefore they believe that leprosy is a disease spread by insects. When patients have this prickly sensation under their skin due to nerve damage by M. leprae bacteria, they believe that have not been cured and this massively affects their quality of life physically and psychologically.

This week, I spent a morning in clinical psychology with Aunty Valsa. As well as seeing patients similar to Catriona’s, the student nurses, counsellors, and myself discussed how livelihood is affected. In the UK, the concept of reasonable adjustments being made for people with disabilities, or other health problems is not questioned, and is expected in order to allow all to be able to access work and maintain their livelihood. Suggesting alternate jobs can be very difficult in India. For example, many believe only a certain caste can do certain jobs – so a farmhand would refuse to weave cloth because they are not in the right caste. Another barrier for women would be the husband refusing to allow their wife to work because she has leprosy.

The stigma of leprosy affects patients in different ways. Some appear to turn to their local magician for cure and then present very late to clinic, when they realise that something is still not right. Some, believe that they have had ‘black magic’ done on them by an enemy and that is why they have leprosy.

At the end of my final week at CMC, I got the opportunity to spend time with the Hand Leprosy Reconstruction Surgery department. They were started by Paul Brand, and following his work, are experts in correcting deformities in the leprosy patients’ hands and feet. This helps reduce stigma, improve their function, and therefore, allows them to live a more normal life. Physiotherapy for the hand was fascinating. There were many gadgets and exercises that the patients needed to do to help increase muscle strength in the muscles affected by the infection. This also helps improve nerve function and prevent deformities.

They also do work outside of leprosy, helping patients with congenital deformities in their hands. I was lucky to have the opportunity to witness an operation of the removal of an extra thumb from a 5-year-old girl, and the release of amniotic bands around the foot and hand of another girl. The technique of these surgeons were inspiring and I was amazed by the improvisation of the surgeons. However, I was saddened to realise that these deformities are normally sorted very early in life and although they will be able to live a normal life now, many more surgeries are needed to correct the deformities and improve their function.

I have really enjoyed my time at CMC and have been truly inspired by the work done by the staff here. Leprosy, is very much still prevalent in India and I am sad to see that stigma is the biggest problem in preventing patients from seeking help and living a normal life, even after cure. Chronic pain is an issue, but when patients present early enough and become cured, chronic pain is almost non-existent due a lack of damage to nerves by M. leprae. It became obvious to me that most patients with leprosy were poor and could not afford treatment outside the free antibiotics and so would learn to live with any pain or complications. I hope that my experience here will enable me to look after all my patients in my future practice holistically, and help me educate others about leprosy and dispel the myths associated.

For me [Catriona] it has been an honour to see the holistic care of people with leprosy and hear their stories. Not only have I been able to observe the impact of leprosy on a person’s psyche, I have been able to see the impact it has on all areas of life. Stigma for me was something I expected to see, but the scale and the consequence of it are more than I could ever have imagined. Before my trip, and before I educated myself about leprosy I believe I was partially prejudiced by the myths that surround leprosy. I therefore am so thankful for this experience, and to CMC and Karigiri for helping in my education not only academically, but socially as well.

NB. From now we will be travelling to Sri Lanka and around India. Whilst travelling we will be working on our case reports to be sent to journals to see if they can be published.

Catriona is also very happy to say that she passed her exams and will be moving into her final year of medicine which was unexpected. Kristina is moving into her fourth.

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Second week in India – visiting Karigiri

08/05/17 – 12/05/17
On Monday we had our first ever exposure to leprosy, in the leprosy clinic at CMC. We saw examples of relatively early intervention and management of the disease. This was a follow-up clinic where patients were monitored whilst being on treatment or for those who had finished treatment and were cured, these patients are kept under supervision for a minimum of 3 years in case of relapse. The majority of the patients had tuberculoid leprosy, or borderline with a greater amount of skin patches on their bodies.
[Catriona] from my perspective none of the patients reported depression or any psychiatric component. However I noticed the first patient we saw had obvious evidence of deliberate self harm of his arms, illustrating some psychiatric illness. Whether this was due to leprosy was unclear. I found out that they counsel patients about their diagnosis, and this is recorded in their notes.  I asked about stigma in this clinic and the clinician stated that although it has reduced since 1950s it is obviously still around. For example the majority of patients had mild disability such as an ulnar claw hand. However although it is arguably a relatively minor disability, is indicative of leprosy and thus produces stigma. They also have to undergo extensive hand physiotherapy to restore some grip function in order to maintain a living – this is an additional psychological stress.
[Kristina] from my perspective patients mainly reported nerve pain during the first 6 months of treatment. This pain was due to the inflammation of the nerves invaded by the bacteria (Mycobacterium leprae) causing the nerve to swell – neuritis. When caught early, chronic neuropathic pain can be prevented by treating this with steroids (commonly oral prednisolone) over a few months. I learnt that certain patients can undergo a type one reaction to the bacilli causing pure neuritic leprosy, therefore mainly affecting the nerves in the body. One such patient currently on leprosy treatment was complaining of ulnar nerve in his arm which had stabilised and new pain in his ankle. The ankle was x-rayed to check for a new lesion and more steroids were prescribed. After discussion with the doctors, I learnt that neuropathic pain is treated similarly as in the UK. This patient was taking Pregablin for his pain.

Furthermore, even when his leprosy is cured, the damage to the nerves cannot be reversed – the neuropathic pain remains chronically. The patients are counselled that this is the case as many patients can still believe that they are not leprosy free. Unfortunately, this treatment for pain is not free and the patients must pay if they can. Many patients with such chronic pain will not take the treatment if they feel that they can cope with the discomfort. On reflection, this treatment I realise is taken for granted in the UK, where prescriptions are at least significantly subsidised in price, if not free. To live in pain and accept is a concept that I had not thought about. As patients are supervised for at least 3 years after cure, new pains or worsening pains are monitored for – this should not happen as any pain caused by the leprosy should be stabilised. If this occurs, the patient is tested for re-infection/relapse of the leprosy. This further reduces their quality of life as they will have to live with more pain and re-live the stigma of leprosy all over again.

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On Wednesday we had our first visit to Karigiri hospital. Karigiri was a hospital built in the 1950s as an off-shoot of CMC to treat leprosy patients. It was originally planned to be as part of the CMC buildings but the general public opposed and therefore it was built far away. Although built in arguably sad beginnings the place had flourished into one of the most holistic and lovely hospitals I have ever been to. We were shown a video on the history of Karigiri, followed by tours of the various departments. We first went to physiotherapy – where they were assessing patient’s functionality in terms of sensory and motor function and whether this had changed since treatment. With the patient with quite severe lepromatous leprosy we saw that his sensation had improved since beginning treatment. He originally had not wished to come for treatment due to his own stigma against the disease, and had absconded after previous treatment attempts. However now due to the persistence and support of his family he was here for treatment.
Karigiri has a holistic approach to care. Patients with leprosy are assessed in physiotherapy and based on their needs can be exercises to help strengthen muscles pre and post op, and/or are given splints and supports. There is also training of how to do activities using different muscles or with different tools in occupational health. As part of occupational health and rehabilitation there is prosthetics and orthotics centre at Vellore which creates shoes out of microcellular rubber – specifically designed to prevent leprosy patients from getting ulcers. Interestingly a lady in for ulcer care refused to wear those shoes as they are now associated with leprosy patients, and the stigma was too great thereby meaning she was coming in to Karigiri multiple times for ulcer care, rather than face stigma. Health education is really important to ensure patients check their extremities regularly for ulcers and injuries, as well as protect them. Ulcer care is a huge part of management, and all the in-patients were there for ulcer care.

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All general medicine treatment is under the care of the dermatologists, who in addition to the skin aspect of leprosy also take care of the patients’ complications, nerve pain and disability being a big part of that. As acute pain is much more common, this is treated aggressively to prevent the nerve being damaged so much that chronic neuropathic pain ensues. They have a set of guidelines produced by the doctors in CMC and Karigiri who look after leprosy patients to guide them in this treatment. Ophthalmologists with an interest in leprosy manage the eye complications and the pain associated with it. Along with the physical disabilities that leprosy causes, blindness is another debilitating consequence which can be prevented.
Finally an aspect of the holistic care that I [Catriona] spent a lot of time in was the psychology department under the care of Aunty Valsa – one of the warmest, kindest and most inspirational people I have ever had the delight to meet. She is a clinical psychologist and has worked at Karigiri with leprosy patients for 27 years. She spoke about the aspects of counselling that she does – dealing first with the false beliefs about leprosy that it is due to sinning and is as punishment, before focusing on the grieving process of being diagnosed with a disease (in all diseases). Finally she deals with issues of disclosure and confidentiality; you must be sensitive but it is also imperative that the family are screened. IMG_0532.JPG
From a lady I saw in the clinic it was clear how different aspects of her life were affected by leprosy. She was grieving for her daughter but had no one to talk to about it, as she could not talk to neighbours because of leprosy stigma. She is her grandchildren’s main carer in the wake of her daughter’s death, and is struggling as she cannot work due to the deformity of her leprosy. It was these stories that I had the honour of hearing, and which will go into my project at the end of this placement.

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Whilst we were there we also visited a place called Shanthigramam, which is a place where leprosy patients who have been ostracised by their families can live. 12 elderly people, over 70 years old, live in this community and have lived there for most of their lives. They were all so lovely and the place is largely self-sufficient, but they are struggling for funds after contributions from American Leprosy Mission and other charities have largely dried up. This place is an essential haven and a place that I think the St Francis Leprosy guild may be interested in supporting.

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So we’ve arrived – first blog post

 

01/05/17- 07/05/17

So we’re arrived – and our first thoughts are that India is hot, chaotic, vibrant, and absolutely brilliant. Every person we have met has been so lovely, and although we have unfortunately had to deal with a small amount of Indian bureaucracy, the majority of our time here has gone smoothly.

For our first week we have been placed on Medicine 3 and Medical ICU to settle in and see how generally medicine works in India. More specialised leprosy work will start next week. Medicine 3 is a large general medical speciality which in the clinics saw a variety of patients but principally hypertension, diabetes, and endocrinology. On the ward as part of Medicine 3 we were placed on the high dependency unit and then spent the next two days on Medical ICU.

The first thing that stood out to us was the sheer volume of people. Clinics, wards and hallways were all packed with hundreds of people. Not only that but many will wait in hot stuffy corridors, forgoing food and water just for a chance to see the doctor. One family I saw had travelled two days just to get here. It makes you so grateful for the National Health Service in the UK, and makes you re-think moaning about waiting 4 hours in A&E.

There are some diseases that we would class as tropical diseases in the UK, we saw and read about patients in the hospital with Dengue Fever, Scrub Fever, scorpion stings and snake bites. But there are also other diseases and conditions that are not tropical but are still rare in the UK. For example, many patients in intensive care and high dependency had a diagnosis of swine flu (H1N1). We had an endemic of this disease in the UK in 2009, but have not had many cases since, whereas India has had a couple hundred cases every year since 2009, and it was believed in 2015 that it had possibly mutated to a more virulent form. Similarly, two conditions not strictly ‘tropical’ but that we would rarely see in the UK are heatstroke and dehydration. Around Tamil Nadu and Vellore there is a thick layer of dust, river beds are dry and it is 40oC most days – but even in the height of the heat there are manual labourers working in the sun. It shocked me additionally how dangerous these conditions were with many patients with heatstroke or dehydration as a differential or confirmed diagnosis, currently in HDU or ICU.

It is additionally sad to see the consequences of diseases that could have been more effectively managed if they had presented earlier, however patients probably have not done so due to financial constraints. For example, there was an awfully sad case of a lady who presented with a stroke, as a consequence of being in a thrombotic state due to a probable pancreatic tumour. This tumour had been growing in her abdomen causing distension for months but she presented only now. We also saw Tuberculosis (TB) – a disease we do see in Birmingham – however, at CMC we saw so many different forms, from pulmonary to spinal to meningitis. TB similarly to leprosy is a disease associated with poverty which amplifies in overcrowding, and many of these TB patients were presenting with advanced disease. Given leprosy’s incubation period and insidious onset of symptoms, as well as mainly affecting those with financial constraints – I imagine we will see similar varied and advanced presentations of leprosy patients next week.

Furthermore, particularly in the ICU but also in the HDU we have seen patients with advanced AIDs – on ventilators, with CD4 counts of 12 but who were only diagnosed as HIV positive on this presentation. We read further and found that although India has only a 0.26% prevalence of HIV, as the total population is 1.2 billion, it remains the third largest HIV epidemic in the world. There are roughly 2.1 million people living in India with HIV with 86000 new cases a year but rates are falling.

 Anti-retroviral treatment is available free since 2004, but uptake is low with only 44% of those eligible for treatment, receiving treatment. At ART clinic’s patients can receive treatment for HIV and opportunistic infections as well as receive nutritional advice and have their CD4 counts checked. Many find it hard to access clinics, and discrimination and stigma against HIV are actually on the increase whilst the HIV and AIDs budget from the government is decreasing. It seems so unfair that due to this a disease that can be successfully managed, is not being done so. In the UK the vast majority of people diagnosed as HIV positive live full happy lives with no risk of transmission to others, and this should be the case in India. Thankfully there are schemes to help improve access for patients/decrease stigma run by charitable efforts listed here

 

https://www.avert.org/professionals/hiv-around-world/asia-pacific/india. [This is additionally where I found the statistics above].

India has the third largest HIV epidemic in the world. In 2015, HIV prevalence in India was an estimated 0.26%.1 This figure is small compared to most other middle …

Although patients of CMC have to pay for treatment, it has been lovely to see the charitable nature of Christian Medical College. Investigations and treatments are ordered efficiently, and only if absolutely necessary, and there are always other options for those with financial constraints. Furthermore, where they can, some patients who are desperately poor can be treated for free. This money is generated through the generous efforts and projects throughout CMC. For example, the paper bags supplied in the local convenience store, are created from old newspapers which are donated free of charge, turned into bags by volunteers, and sold to local stores to raise money for patients.

We have only completed one week of elective, but already being here has been invaluable.

[Catriona] During this year, I have really struggled and jumping from speciality to speciality, and having to observe in clinics rather than talk to patients drained my drive for medicine and by the end of this year I was exhausted. Not only am I experiencing a completely new culture and environment, I’ve regained my passion for learning, medicine, and desire to help others – which I am so glad about.