The Ellins family stay to help at Lalgadh – November 2012

Volunteering for Nepal Leprosy Trust at Lalgadh Hospital, South Nepal – November 2012

After living within the Lalgadh community for five 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. It is now time to say our good byes and make our journey north to Kathmandu and beyond. Our time in Lalgadh has touched us all in different ways and so I have captured some reflections here.

My main interest in spending time in Lalgadh was to gain an understanding of the public health and community development undertaken by the outreach teams. . Although my primary interest is in public health (I have been a Health Improvement Specialist for 17 years), I am also a nurse and was   interested in learning about the work that takes place within the hospital.

My family accompanied me to Lalgadh as our time in Nepal is part of a ‘round the world’ year of travel. When planning this adventure we were keen to volunteer to enrich the overall experience. We felt that spending time living within a community would enhance our understanding of a culture and allow us to get to know local people and their customs. Through work contacts I was introduced to Dr Mike Lavender and after meeting Mike and his wife Sue we felt that spending time at Lalgadh would be a fantastic opportunity for all the family.

There are two community development teams at Lalgadh, Village Alive and RECLAIM. Village Alive aims to undertake essential public health work, including community education related to personal and environmental hygiene and mother and child health e.g. immunisations, nutrition, ante and post natal care including 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) and once the loan has been repaid another family can benefit. This system promotes self-sufficiency and helps to return pride and raise self-esteem to communities 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.

^{Woman involved in a micro-finance scheme}

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 during my time in Sierra Leone, West Africa and would have loved to observe one here but the Village Alive Team are currently working with their target number of communities. Specific training is offered to members of the community including young people, leaders and other influential people.

While out with the Village Alive team I have checked blood pressures on residents with hypertension, all were doing well. 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 have visited several new mothers, one with four day old twin girls. The babies were 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. I also observed a child I thought had jaundice but on closer inspection a serious eye condition was detected and the family advised 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. Families have access to local community health posts and if necessary and affordable will travel to local hospitals for treatment.

RECLAIM 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 at Lalgadh hospital and includes foot care to help prevent ulcers and deformities. Once patients return home they are visited by RECLAIM and helped to set up or join a ‘self-care cell’, where members support each other to stay physically and psychologically well. Self-stigma is a common problem with people experiencing depression and experiencing social isolation. Many experience rejection from family and homes. I was told one story of an elderly woman with leprosy who had been rejected by her son and thrown out of the family home. As a result she was homeless and due to her disabilities dependant on the food given to her by local families. RECLAIM heard about this situation and through community education (that includes dispelling myths and misunderstanding through street drama) 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.

After 12 months each self-care cell is supported to become a self-help group. These groups receive funding to promote financial stability and economic growth, both to benefit those affected by Leprosy and the wider community. I was lucky to attend a village celebration event, arranged to acknowledge the transition from a self-care cell to a self-help group. The celebrations took place in a remote village that had us crossing streams and taking the Land-Rover over rough tracks to reach our destination.  We enjoyed a ‘feast’ consisting of freshly made bread and a tasty bean dish. Plates were made out of banana leaves stapled together – I guess it saves on the washing up! 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.

On one visit to Jaleshwor I was fortunate to meet the district health officer. We discussed the public health concerns of measles, a recent outbreak of infant diarrhoea, the recent increase in HIV and the progress being made to eradicate Leprosy. I found it interesting to compare the similarities and differences with those in the UK.

My daughter, Louise accompanied me on one outreach visit. She enjoyed the day which included visiting new mothers and babies and observing a group meeting. There was a rather heated debate as several women were keen to receive a loan to start a small business. Louise enjoyed holding a small puppy but quickly handed back a young piglet with a very loud squeak! The village had not yet built latrines and so we had to find a sugar plantation when ‘nature called’!

During our time at Lalgadh I also spent time within the hospital. While observing an outpatients clinic I was surprised 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 was an obvious challenge for me and I was grateful for any explanations received. I found it difficult not to bombard the staff 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 people with suspected Leprosy were seen by another clinician.

I have since visited other districts where Lalgadh regularly provides satellite clinics to treat and monitor people affected with leprosy. These clinics take place in district hospitals and I was shocked by some of the conditions. Facilities were basic, bedding was absent and patients lay on old torn mattresses. I observed an entire family sitting on a bench in the reception area of the hospital. On closer inspection they were all receiving intra-venous fluids that were hooked onto a wall behind them. This family were being treated for snake bites, I didn’t ask how they had all managed to get bitten but I trust they made a full recovery.

Patients diagnosed with leprosy attend clinics for regular check-ups while on the multi-drug treatment regime. Many patients are well but some (especially those diagnosed late) 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’ can cause other serious health conditions when taken for prolong periods and can inhibit wound healing. The aim is to diagnose and treat leprosy early, before any nerve damage takes place. Early diagnosis and treatment also helps to prevent the spread of leprosy and therefore helps towards the eradication of this serious health condition.

I enjoyed attending the mother and child clinic that is held weekly and provides ante-natal care, child immunisations and a family planning service. I gave immunisations 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 wanted to attend a delivery but disappointingly I was never in the right place at the right time.

I have attended the weekly ward round where I observed patient’s having their dressings changed.  I was moved by the pain and suffering experienced by some people. 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 was more concerned about bringing in her harvest than her own health and had delayed coming to the hospital for this reason. This lady was experiencing a severe leprosy reaction, causing sores to break out all over her body and was in obvious pain and distress. I am pleased to report that she has responded well to treatment and although she remains in hospital is improving daily.  After recovering from my initial shock at the severity of some patient’s wounds I was keen to undertake some dressing changes myself and achieved this in my final week at Lalgadh.

^{Changing a patient’s dressing at Lalgadh hospital}

I also observed the amputation of a badly infected finger. This elderly patient was keen not to lose his index finger, especially as he had already lost several other digits.  Unfortunately the infection was too severe to save it and his finger was removed. To cope with this uncomfortable experience, this man sang his way through the operation. I was amazed that although clearly traumatised he was able to stand and make his way out of the operating theatre with just a stick and an arm for support. I later enquired about his age and was told he was 95 years old with very limited sight.

My husband John (a teacher) and my children Jacob and Louise focused on home schooling while I was learning about the work at Lalgadh.  John introduced himself to the Sunrise Academy, the local nursery / primary school and enjoyed a week teaching the children and helping them learn some English words with the use of picture cards and songs. John was keen to set up school links with two primary schools he works at in Newcastle Upon Tyne, UK. They have already sent each other videos of the children singing nursery rhymes both in Napoli and English.

While at Lalgadh my son, Jacob, undertook a school project that focused on the ‘creatures of Lalgadh. The lab at Lalgadh hospital displays many (dead and preserved) examples of animals and insects that have all been caught in the hospital compound. Jacob’s project focused on ants, geckos and millipedes that he observed during his time here and he photographed the specimens in the lab included the head of a rather large cobra, other varieties of snake, scorpions, millipedes and spiders. What a relief to be told we missed snake season.

During our time at Lalgadh we enjoyed two Hindu festivals, the first, Diwali (or Tihar) is locally known as the festival of lights. Many Hindu families erect lights outside their homes, not dissimilar to Christmas lights that decorate houses across the UK each December. Candles also decorated the outside of homes giving a very pretty and spiritual effect as we walked up the road towards Lalgadh hospital. The second festival known as Chhaith arrived six days after Diwali. I was told that Chhaith is an important Hindu festival when people respect the sun which gives light to the world. We were privileged to witness local people preparing for this religious event while we watched a street drama.

^{Preparations for Chhaith}

With the season of Hindu festivals over and the Christian festive season about to begin it’s time to bid goodbye to Lalgadh and make our way to Kathmandu and beyond. We are sad to leave but feel enriched from our time here. Thank you to everyone who helped to make our stay at Lalgadh so pleasurable.  We will never forget our time with you.