Standing up to the stigma

WITH a little help from the people of the Bailiwick, international charity The Leprosy Mission has launched an ambitious campaign aimed at eliminating the disease from an entire country.

The ‘Heal Nepal’ initiative is centred on the Mission’s Anandaban Hospital, which enjoys a special relationship with the charity’s Guernsey support group.

One islander with first-hand experience of the work being done at Anandaban is junior doctor Ella Botzenhardt, who last year spent more than two months operating alongside the staff there.

Ella is now based at a major hospital in Liverpool, but prior to embarking on her career in the UK she had to choose a foreign posting to test her doctor’s training in a completely unfamiliar working environment.

‘I had 10 weeks to do something,’ she said. ‘I wanted to go to a charity hospital and I wanted to go somewhere in Asia, so I found Anandaban Hospital online and was captivated by the work they were doing.

‘The first thing to say about leprosy is that it still has an intense stigma amongst people in Nepal and it affects every aspect of their care.

‘It’s often said that leprosy is more of a social disease and often the social implications of having leprosy are worse than actually having the disease itself.

‘Anandaban does a lot of work addressing these social issues and ending the cycle of poverty that goes with it.

‘One thing that really impacted me was the attitude of the staff to the patients and I really couldn’t commend them more for the work they were doing.

‘The hospital worked very much in both looking after the patients’ physical needs and treating their leprosy, but also the mental and psychological problems that come with having leprosy.’

Ella added that some of the experiences she had, while immersing herself in the work of Anandaban and getting to know the patients and their families, would remain with her for the rest of her life.

‘Just walking onto the wards in the first few days and starting to meet the patients, you realise there are people who have been exiled from their villages. There are people who have been stoned because they’ve had leprosy.

‘One of the ladies I met who made a real big impact on me had been dropped off at a leprosy colony at the age of 11 by her parents. They left her there and they drove away and she has never seen them again.

‘She is now a lady in her 50s and she still lives in the leprosy colony where they dropped her off but the thing that struck me about her is that she had found friends among the leprosy patients and they had become her surrogate family.

‘I think being involved in that side has affected me much more than being involved in the physical treatment side of dealing with leprosy.’

As soon as Ella arrived at Anandaban she threw herself into her clinical role, working side by side with the young Nepalese doctors and nurses and also with a few other doctors from western countries.

‘When Anandaban was set up many years ago it was mostly staffed by westerners and funded by westerners too, but we’re now reaching the point in the history of the hospital where it’s mostly staffed by Nepalese.

‘It’s still largely funded by the west but actually the Nepalese treat the patients best because they understand their culture and they understand the system.

‘And seeing Nepalese people who aren’t afraid to stand up against the stigma that’s going on in their own country and actually to say “I’m happy to treat these patients and I’m happy to touch them” has made a real impact on me.’

Another striking aspect of Anandaban for Ella was that the hospital is still very much in recovery mode following the devastating earthquake that hit Nepal in April 2015, destroying hundreds of buildings and displacing many thousands.

‘There was still a lot of rebuilding work that needed to be done in the hospital and not a day went by when we did not have a discussion about something earthquake related.

‘In terms of the people working at the hospital, a lot of them were still in the phase of rebuilding their houses.

‘On the first day when I was given the tour I was told not to jump too much in theatre because there was a crack in the floor. They had different theatre wards and rooms that were not being used because the foundations were not secure.

‘But they’re rebuilding and expanding, which I think is really positive because they’re not just going to rebuild to what they were. They’re going to rebuild bigger and better with more facilities.’

Located in the mountainous countryside about 16 kilometres (10 miles) from the capital city Kathmandu, Anandaban currently has three main wards with about 100 beds in total.

Alongside its daily work treating leprosy victims, many of them suffering the long-term effects of the disease, the hospital runs a general health clinic for people from the nearby villages as well as a small A&E department.

But for Ella the most exciting side of the work going on at Anandaban is its pioneering research into leprosy treatments and its clinical trials with new drugs to combat the chronic ulcers and deformities associated with the disease.

‘It’s amazing because they’re not doing this anywhere else in the world yet. Leprosy is not a disease which people should die from any more. The problem is treating it early enough to stop the long-term complications.’

During her first month in Nepal, Ella had no idea of the connection between the hospital where she was working and her home island.

‘I got a Facebook message from my mum saying the Guernsey Press had done a spread on Anandaban and that’s when I discovered it. Through that I got in touch with the Guernsey support group.

‘I mentioned it to colleagues at Anandaban and I was told of a [Guernsey] plaque at the hospital. I walked past it every day for about a month and never spotted it. Suddenly there was this whole connection that I didn’t know existed.’

Praising the work of the Guernsey support group and its supporters from church congregations of various denominations, Ella said she had witnessed the profound difference their fundraising had made to people’s lives in Nepal.

She also spoke of her own Christian faith that had driven her to choose Anandaban for her medical ‘elective’ on the completion of her training.

‘I think we have a certain mandate as Christians to help people who are poor and who are exiled and who are in pain and suffering. Helping people affected by leprosy really fulfils that because they are in such need.

‘Certainly knowing that I had all these skills that I had been given as a gift and as a blessing made me want to use them for a purpose.

‘When I was given 10 weeks to be wherever I liked, a lot of my friends did things like going to hot tropical beaches.

‘All those are good after five years of working hard but I really felt that I needed to find somewhere where I could use my skills and actually be an asset to the hospital I was going to.’

Born and brought up in Guernsey, 23-year-old Ella was educated at the Castel Primary School, Les Beaucamps and the Grammar School Sixth Form Centre.

She went to Nepal after completing her medical studies, graduating last July, and is now six months into a two-year contract at the Royal Liverpool University Hospital, doing rotational work in different wards.

She has yet to make a firm decision on the direction she will take with her medical knowledge, although she is unlikely to become involved professionally with the treatment of leprosy.

‘The Nepalese who treated leprosy were mostly dermatologists and I don’t think that’s a field I particularly want to go into.

‘But I do want to continue partnering with Anandaban, supporting them and helping with fundraising in future because the work they’re doing there, I think, is too important just to forget about now I’m back in England.

‘I’d like to go back to Nepal just as a tourist but I could not go back and not pop on a motorbike down to Anandaban and visit them all because the friendships I’ve made will carry on for many years.’

• The Heal Nepal campaign: The Leprosy Mission launched a campaign on 27 January, World Leprosy Day, to equip its flagship Anandaban Hospital to finally rid the country of the stigmatising and disabling disease. Thanks to UK Aid Match, every pound donated to the campaign before 27 April this year will be doubled by the UK government. For more information, visit www.healnepal.org.uk