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.
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.