Volunteering for Nepal Leprosy Trust at Lalgadh Hospital, South Nepal – November ’12
We have been living here for two weeks it seems long ago since we scrambled off the bus, spotted the ‘Lalgadh hospital this way’ signpost and made our way up the dusty road to the hospital compound.
Lalgadh Hospital is in the south of Nepal and the hospital serves the four surrounding districts of Mahottari, Sarlahi, Dhenusha and Sindhuli. However patients travel from other areas including India to receive Leprosy treatment here. The hospital was created by a missionary nurse named Sister Aileen who had worked in Nepal as a missionary since 1972 and opened hospitals both in the west of Nepal and in the mountainous northern area of Pokhara. Lalgadh hospital opened in 1992 after many years of personal perseverance and determination. Sister Aileen’s initial request to open a Leprosy hospital in the south of Nepal was at first declined by the Nepalese government due to her Christian beliefs. She persevered and in 1990 after a meeting with the new president of Nepal she was granted permission for the development.
Lalgadh is now one of the busiest Leprosy hospitals in the world, seeing more than 1,000 new patients every year. Leprosy services are provided free of charge but attracting continuous sources of funding is a challenge. In 2010 the Nepali government declared that Leprosy was no longer a public health concern as the prevalence rate had been reduced to 1:10,000. The prevalence rate is double this figure in the four districts of Nepal served by Lalgadh hospital and Leprosy continues to be a concern to charities working to eliminate the condition.
This statistic is also meaningless to those people living with and affected by Leprosy, with people suffering pain, deformities and the devastating effects of the isolation, social stigma and discrimination. Following treatment (which kills 99% of the harmful bacteria after the initial dose) the dead leprosy bacteria remains in the body causing many patients to suffer painful, serious and repeated Leprosy reactions that cause inflammation, nodules and ulcers.
Lalgadh hospital consists of in-patient services for patients receiving Leprosy treatment, a busy generic out-patients department (OPD) and the public health and community development work that takes place in the four districts served by the hospital. My main interest in spending time in Lalgadh is to gain an understanding of the public health and community development undertaken. I am also interested in learning about the work within the hospital.
To date I have accompanied the community teams on outreach visits, sat in on outpatient clinics including the mother and child health clinics and observed dressing changes on in-patients suffering from Leprosy ulcers. I would still like to spend some time in the operating theatre with opportunities to observe skin grafts, corrective surgery for deformities, amputations and cleaning of infected wounds. I am also interested in observing the lab technicians who undertake skin tests to calculate the severity of the leprosy bacteria and I definitely want to spend more time out and about with the Village Alive and Re-claim teams. Interestingly the lab holds many (dead and preserved) examples of animals and insects that have all been caught in the hospital compound. Jacob has photographed these specimens which include the head of a rather large cobra, other varieties of snake, scorpions, millipedes and spiders. It’s a relief to know that we have missed ‘the snake season’.
While observing an outpatients clinic I was surprised to observe that not one of the patients seen that day had Leprosy with most people attending for general complaints such as skin infections, abscesses and fever. The language barrier is an obvious challenge for me and I have been grateful for any explanations received. I found it difficult not to bombard the doctor with a million questions but with so many people waiting to be seen I had to limit my enquiry. I later realised I had sat in on a general out-patients clinic and any patient suspected on having Leprosy was seen by another clinician.
For those of you aware of my work in the UK you will know that confidentiality is an essential component of the You’re Welcome quality mark. I therefore found it interesting to observe a lack patient privacy. People tend to gather around the consulting table listening into consultations, eagerly awaiting their turn in the queue. I was told that the biggest concern for the patient is to be seen quickly so they can return to their farms, especially at this time of year when families are busy bringing in the harvest.
I have now observed a clinic for patients with Leprosy who return for regular check-ups while on their 12 or 24 month multi-drug treatment regime. Many patients are well but for some (especially those diagnosed late) they have deformities that affect everyday activities and some suffer from repeated ‘Leprosy reactions’ that cause much suffering and ill-health. The steroids prescribed to treat these ‘reactions’ cause other serious health conditions when taken for prolong periods.
I have enjoyed attending the mother and child clinic that is held weekly and provides ante-natal care, child immunisations and a family planning service. On my second visit I gave several immunisation injections and was shown how to palpate the mother’s abdomen to establish the number of weeks of pregnancy, the position of the foetus and foetal heartbeat. I am hoping I may attend a delivery while I am here. Perhaps there is a future midwife in me!
Recently I observed patient’s having their dressings changed. I was not sure what I expected but found myself overcome with emotion due to the pain and suffering experienced by some. One dressing change took over an hour to complete and I was informed that it had taken double this time when the patient was first admitted. This woman (in her 30”s) was more concerned about bringing in her harvest than her own health and had delayed coming to the hospital for this reason. She is experiencing a severe Leprosy reaction, causing sores to break out all over her body and was in obvious pain and distress.
There are two community development teams at Lalgadh, the Village Alive Project and the Re-Claim project. The Village Alive project undertakes essential public health work, including community education related to personal and environmental hygiene and mother and child health e.g. immunisations, nutrition, pregnancy care and family planning advice. They also establish micro-finance projects in villages affected by leprosy. Training in book keeping and basic literacy skills are undertaken. Women and men’s groups are created and weekly meetings take place where savings are collected and loan requests received. Families can apply for loans (enough to buy a goat) which are paid back once profit has been made, for example from breeding from the goat. Once the money is returned another family can benefit. This system promotes self-sufficiency and helps to return pride and raise self-esteem for those affected by leprosy.
The Village Alive team support a village for an initial 3 years but even after this time continue to make less frequent visits to maintain the community developments and offer their support. The staff explained that change can be painfully slow as ingrained traditions are often difficult to shift. One team member explained that in the first three years they can make ‘tracks’ to bring about positive change which then can take many additional years to become sustainable developments.
Initially villages undertake a ‘Rapid Participatory Appraisal’ (RPA) to assess the current situation and identify the health and education priorities facing each community. Each village identifies 5 priorities that become the focus for the coming years, e.g. education, sanitation, safe water supply. A poverty assessment is also undertaken. I have been involved in RPA in Sierra Leone and would love to observe one here but the Village Alive Team are currently working with their target number of communities (6 villages that are visited each week) and so it is unlikely that I will witness this during my time here. Specific training is also offered to many members of the community including leaders and key influential people. There is training for young people but I haven’t met any members of these groups. I understand that many young men travel to India to find employment and provide much needed income for their families.
While out with the Village Alive team I have checked blood pressures on residents with hypertension. All were doing well on their medication. We visited a woman experiencing fits who was concerned for her health and well-being. There is much misunderstanding surrounding epilepsy, including a cultural belief that the person is possessed. Part of the teams work is to dispel cultural beliefs that cause pain, suffering and isolation to those affected. I was informed that the medication options for epilepsy are limited with only one drug available.
We have visited new mothers, one with four day old twin girls, weighing 1.5kg each. The babies were both feeding well and the mother had received antenatal care. The mother and child immunisation programme works well here to prevent the tragic and fatal infant tetanus I observed in Sierra Leone 20 years ago. I hope the situation has also improved in West Africa. While in the field I also observed a child I thought had jaundice but on closer inspection the team detected a serious eye condition and advised the family to take the child to an eye hospital. The mother explained that they would have to wait for the father to return from working in India before they had enough money to travel. I witnessed several children on treatment for eye infections, and a child with a very swollen cheek taking antibiotics for a mouth abscess, she did look miserable. Families have access to local community health posts and if necessary and affordable will travel to local hospitals for treatment.
Re-claim is the other community development team at Lalgadh, currently working within 71 local communities to dispel the superstition and misinformation associated with leprosy. Individuals being treated for leprosy receive a two week self-care programme. This training takes place in the hospital and includes foot care to help prevent ulcers and deformities. Once patients return home they are visited by the Re-claim team and helped to set up a self-care group, where members support each other to stay physically and psychologically well. Self-stigma is a common problem with people depressed and experiencing social isolation. Some contemplate suicide and many experience rejection from family and homes. I was told one story of an elderly woman rejected by her son and thrown out of the family home. As a result she was living rough near a riverside and due to her disabilities dependant on the food given to her by local families. The Re-claim team heard about this situation and through community education (that includes dispelling myths and misunderstanding) were able to re-unite the woman with her family. The team arranged reconstruction surgery for the woman at Lalgadh hospital that increased her independence and acceptability within the community.
Re-claim helps establish these self-care groups. Group facilitators are identified which is always a leprosy affected person. Training is given in communication skills, literacy and numeracy and they are supported in the management of meetings. After 12 months the group is encouraged to become a self-help group. Each self-help group receives funding that support financial stability and economic growth, both to those affected by Leprosy and the local communities. They also allow a sense of pride and respect to return to those living with Leprosy and help dispel the self-stigma that often exists. The grants are given in a partnership between the government, Nepal Leprosy Trust and the community and develop important links with the Nepali government and non-government organisations (NGO’s).
I have attended a village celebration event, arranged to acknowledge the transition from a self-care to a self-help group. The celebrations took place in a remote village that had us crossing streams and taking the land-drover over rough tracks to reach our destination. At one stage we had to leave the vehicle while it attempted to cross a large hole in the road. We made it safely across. The event took place in the village school and involved a lengthy meeting with a ‘feast’ to follow consisting of local bread and a tasty bean dish. Plates were made out of banana leaves stapled together – I guess it saves on the washing up! The other volunteers and I were welcomed heartedly with hugs from some of the women. It was clear that there was local commitment to make a difference to the lives of those living with Leprosy and an appreciation for those offering support.
So we are now enjoying a 3 day Hindu festival which is locally known as the festival of lights. Many of the local Hindu households have erected lights, not dissimilar to Christmas lights back home and many candles are decorating the outside of the homes. As I finish this the electricity has just gone out and many people are rejoicing and enjoying their celebrations. Happy Tahar to you all.