Prolapse uterus and it's entangled factors: Her story is Nepal's story and I could not just jump into Diwali celebration without conveying her story to the sector, country and the world

Nepal is in festive mood of Diwali (the festival of lights) and so is my family. This is a time for my family to gather, eat and enjoy.  Cousins and relatives are gathered for the feast. They just called me downstairs to participate.

 I just arrived from Gorkha which is a 5 hours journey west from Kathmandu. Gorkha is the place where i am based to support the rehabilitation of injured earthquake survivors through an organization called International Medical Corps. As i arrived home, freshen up, had dinner but my mind was not letting me to go down stairs with my cousins to enjoy  Diwali. So, i am aiming something new and different. Right now, its 8 PM and I set my mind to do this write up about a woman with whom I met in a health camp. Among the stories of various women with prolapse uterus, the story of Maya Gurung (name changed) was heart wrenching . Her story shows how isolated and deprived the Nepalese Women are. She had a first degree prolapse at the age of 20 and had been living with it till now. Her story says how responsive our health and social system is? I believe her case represent many Nepalese women living in various districts and villages of Nepal.

I was born and brought up in  Newari family which is one of the native inhabitants of Kathmandu, the capital city of Nepal. During my childhood , i never felt how life in other districts of Nepal would be like. Within one year, i got a chance to visit and stay in many remote corners of Gorkha which is also an epicenter of Nepal earthquake 2015. I am proud to deliver the rehabilitation services,  being based in district level health system. Also one of the greatest achievements for me was to gain an opportunity to understand the people, their barriers and living situation.

The day before, was one of the most memorable moments of my life as I was able to participate in the health camp to deliver health service for women living with prolapse uterus in remote villages of Gorkha. Within my organization, I played the pivotal role to link rehabilitation services with sexual and reproductive health. Thanks to my Organization for acknowledging the concept and supporting me on full swing. I was also able to explain the importance of preventive and rehabilitative role of physiotherapist to prevent and manage the pelvic organ prolapse with  concern official of ministry of health. For me, it took almost a year time to formalize the process within my organization. The day before was the first day I was involved as a team member of integrated camp organized by District Public Health Office (Health tier in a district) for the Women living with prolapse uterus and fistula. My job was to work in tandem with doctors and nurses to deliver the comprehensive health services that also included rehabilitation.

There are specific rehabilitation protocols for the prevention and rehabilitation for prolapse uterus and fistula. Many health workers are aware of Kegel exercise and thanks to previous training programs to these health workers. The concept of exercises are always emerging and changing as per new researches and so does apply for Kegel. On top of all, without the correct demonstration and confirmation of perineum contraction, Kegel’s are most often wrong and that gives opposite effect. Also programming the Kegel exercise technique on daily activities like lifting the load is very important to prevent the stress on pelvic floor.  Importantly, there are specific doses and implications for strength and endurance for pelvic floor muscle that needs to factored in while designing the Kegels. My experience says that for Nepalese women, intervention focused at minimizing the risk of pelvic floor stress by teaching the safe way of performing household chores is the most important preventive method.

Let’s come to Maya Gurung a 50 year old's story that made me to pause my Diwali celebration and made my mind to do this write up at first. She had suffered from first degree uterus prolapse during her first post-partum phase, 30 years back when she had delivered her first son. 

Immediately after delivery, she had to carry heavy water pots and heavy wood and walk for an hour which resulted in first degree uterus prolapse. She thought that’s a minor problem and did not feel like seeking the service from health facility which is 7 hours walking distance from her village. For her, priority were household activities rather than seeking the treatment. Neither her husband nor family insisted her to visit the health facility. This made the situation worse and aggravated to third degree prolapse. Now she has complications like incontinence and abnormal vaginal discharge which is degrading her health and self-esteem.

Now Maya says “I have difficulty on defecation, feels like I am dying with the pain “ Her day starts from 2 am in the morning to carry cattle fodder and carry water pots from a mile.  It’s sad that she has compulsion to continue her activities of daily living with difficulties. She felt that she is not getting cured and won’t live longer. This feeling have made her more depressed and stressed. With her eyes full of tears says “I am worried about my youngest daughter who is studying in grade 7^th as she is the most precious part of my life”. I was surprised to know that her husband is a drunkard who rather than lending helping hands, snatches her money for gambling. She has a small farm and this has been her source of income to run a family but her ideas and thoughts are not taken for family decision making. Her degrading health situation has left her low esteemed that’s why she does not prefer to participate in community functions and decision making events.

Let’s assess  Maya using the International classification of functioning (ICF) model

The main barriers for her was poor health seeking behavior which is linked to her and family illiteracy and poverty level. Another one is distant health facilities that also further contributed to her non health seeking behavior. The third one is our patriarchal culture in which women are confined within the household chores which are stressful. In a course of time, these three factors contributed for degrading health, low activity level and participatory restriction in Maya’s life.

Maya’s story clearly depicts that uterine prolapse is not only a health problem but it is entangled with  many issues like education, empowerment and economy of family. Therefore, a mutisectorial , inter/intra departmental and inter/intra ministerial approach is a must.

This was the health camp where I participated, soon Maya will undergo hysterectomy  and she will be cured. But her other barriers will still remain the same that may further bring complications like urinary incontinence and vault prolapse. Her husband is still not supportive, her poverty line is still the same and she still has compulsion to do heavy household works. There are many Mayas in Nepal who are living below poverty line. Isn’t it the time to think? Isn't it the time to utilize the long experience(available data and lesson learn) to design the sustainable solutions?

Being a physiotherapist, I feel honored to meet Maya and understand the situations of women living with prolapse in Nepal. I know that my contributions to bring Maya to good living situation through my physical therapy intervention are just like a drop in Ocean. Despite of all these, i am hopeful that i was able to contribute at least a new and very important drop in the ocean, the thing that has never  started before( Rehabilitation component added to prolapse uterus management). This has definitely ensured a multidisciplinary approach of care. Maya, now knows how to do her activities with minimal stress on her pelvic floor and what relieving position/exercises to do if she experiences a sudden difficulty. Again she will require  physical therapy intervention after surgery to prevent the complications like incontinence and vaginal vault prolapse.

Nepal has 1800 physiotherapists but not more than 20 quotas are allocated by ministry of health in the health system. Ministry of health has Nepal health sector strategy, national prolapse uterus management guideline, health worker training manual  for fistula and prolapse uterus management, national childhood disability management strategy, birth defect surveillance and control plan as the guiding documents that strongly support to have physiotherapist in a health system. Also there are sufficient human resources in the country now. At this favorable situation (where human resources are available to fulfill the service demands), Nepal should not make any delays to deploy physiotherapists into the health system.

A desired momentum for physiotherapy rehabilitation sector in Nepal

According to World health organization, Physiotherapists assess, plan and implement rehabilitative programs that improve or restore human motor functions, maximize movement ability, relieve pain syndromes, and treat or prevent physical challenges associated with injuries, diseases and other impairments. Physiotherapy prevents secondary complications which are the common cause of disability if not rehabilitated well. Physiotherapy treatment has a big role to play when a person’s function or mobility is affected by pain, ageing, injury, disease, disability or long periods of inactivity.

 People who require physiotherapy service are getting aware about the importance of it gradually but if we focus on districts of Nepal still therapeutic culture for rehabilitation is not properly inculcated. This is due to the lack of education and information to both public and health workers.

Under the auspices of National Health Policy 2014, Nepal Health Sector Strategy 2015-2020 (NHSS) is the primary instrument to guide the health sector for the next five years. It adopts the vision and mission set forth by the National Health Policy and carries the ethos of constitutional provision to guarantee access to basic health services as a fundamental right of every citizen. Here, physiotherapy also falls under the basic health package of Nepal Health Sector Strategy. Specially, after Nepal earthquake 2015, physiotherapy rehabilitation units are established with the support of humanitarian agencies in the affected districts but this new establishment should not be confined to the rehabilitation of injured cases but also there is a huge unmet need not related to earthquake. Thanks to these rehabilitation unit in district hospitals that are delivering the required service in one end whereas from the another end they have also given an example of what the rehabilitation in district looks like.

Nepal health policy 2070 assures to deliver all health service to people with disability. Likewise Nepal health sector strategy clearly mentions physiotherapy service under the basic health package.  Health facility establishment, operation and up gradation guideline 2070 clearly mentions about the provision of physiotherapist starting from the hospital with 25 beds. Despite of having  sufficient national qualified physiotherapists,  they are not being mobilized in district health system this creates a big gap which is well reflected by living situation of people with disability survey, has highlighted that there is  83% service gap on the medical rehabilitation. In one side, Nepal has sufficient policy environment and human resource to have rehabilitation service integrated in health system whereas on the another side 83% service gap in medical rehabilitation depicts the huge difference in paper and implementation, hence Nepal government together with the support of like minded agencies should start thinking on how commitment can be converted into the budgeted action.

But only having the human resource in the system may not bring a miracle to address the service gap as there are lots of socioeconomic issues which remain the barrier for people to access the hospital based services. Rehabilitation services are unique in nature because it requires a periodic follow up , involvement of person and family members and also in many stances, rehabilitation service has to be coupled with assistive devices and specialized surgeries. There are villages in districts from where it requires more than a day time to reach the district hospitals where we are assuming to have the service. A person with disability/injury needs to come together with the care taker (mostly family member) to get the service. The transportation and accommodation cost is the hidden expenses here and also the productive time of another family member who is accompanying to bring the person with disability for services. This is the right time to think the hidden socioeconomic aspect of the beneficiaries which are not often considered while designing budget for the program. One of the best ways to minimize this barrier is to enhance the access to rehabilitation services at the home village. Only the hospital based programs doesn’t fulfill the need, the link of hospital based rehabilitation service has to be created in community in the form of outreach and home visit. Also, the local health facility staff needs to be trained on basic rehabilitation so that early detection, referral and minor follow up is ensured at the community level. One thing that all have to know is, earlier the detection and referral, better will be the outcome of the rehabilitation but this is not the case in Nepal. By birth disability accounts for 33.6% of the total cause. Similarly, 50.6% of disability onset took place within the age bracket 0 – 10 years. Both of these facts suggest that most of the Nepalese acquire the disability by birth and during the childhood. In my experience, most these children appear to receive rehabilitation service at age of 10-15, by that time disability is neglected and by that time cost for rehabilitation goes high with poor  prognosis.

Rehabilitation is a bit expensive if person require the assistive devices like wheelchair and artificial limb. There is always shortage of such device in market as there are no local manufactures of the components and raw materials required for it. An acceptable quality wheelchair suitable for rough terrain cost around 40,000 NRS , below knee artificial limb cost around 30,000-50,000 NRS and above knee artificial limb cost around 1,00,000 Nepalese rupees. Like the standard drug supplied by government to the public through different health facilities, the priority assistive device list has to be also made. In fact World health organization has already made it recently. Poor socioeconomic status of the person should not be the barrier to get such services; hence these sorts of devices are to be also linked with the government health insurance package. Until and unless the socioeconomic barrier are studied and side by side addressed, setting up the rehabilitation unit in government hospital may not ensure the full utilization of services.

Anyone going through this idea may have the notion that these are very expensive and do not fall on the priority. Yes, priority for Nepal is to strengthen the primary health care system which is linked to health promotion and disability prevention. It’s universally accepted that prevention is the cost effective measure to minimize the burden of health conditions. Therefore, budget aimed at prevention should not be diverted to other channel and also it doesn’t mean that huge investment in strengthening primary health care jeopardize the possible allocation for rehabilitation services. The recent twitter (HM_Nepal) update from health ministry revealed that the fund collected from health tax was 16,00,00,00,000 and the expenditure was 40,00,00,000. Not even 3% budget out of this resource was spent. This is just an example of one budget heading. A rehabilitation set up in districts with one physiotherapist, equipment, supplies and a month community outreach doesn’t cost more than 10,00,000 on the first year but from the second year(once equipment are installed) the cost even get down sized to around 7,00,000-9,00,000 in a year with full fledged community activities. If 75 physiotherapy/rehabilitation units are established, the cost would be around 7,50,00,000. If this rehabilitation investment is covered from the fund collected from health tax, rehabilitation services would only burn 0.46% of this fund. It means with the existing expenditure and added rehabilitation service expenditure the burning of this fund will not be more than (3+0.46)% =3.46 % . Still  96.14% of the fund will be unspent, out of which extra 0.5% is more than sufficient to enhances access to rehabilitation service (addressing the socioeconomic barrier of getting the rehabilitation service and covering the rehabilitation service from a health insurance package) The simple example of one particular fund of health ministry proves that money is really not a problem. Also there are sufficient policies and strategies to integrate rehabilitation in health. Then, where is the barrier? This is something that government, international agencies in this sector, service user community and professional association have to be seriously looked upon. .

There are not enough contextual studies and researches done in the sector of disability management and rehabilitation. Neither health system database gives the exact data on disability and rehabilitation services. The non-state service providers have their own database which differs from one to another. Therefore, actors in this sector should focus on generating the properly validated evidences in close collaboration of ministry of health which may give an evidence based way forward to derive the budgeted activities for rehabilitation. Also this expertise is new to ministry, therefore it’s very crucial for stakeholder to deliver the unbiased technical support. With the continuous advocacy of the stakeholders and professional association, already the focal unit for disability has been operational in department of health services, which is good example of joint effort by ministry and stakeholders. Now, the similar initiative is required to strengthen the established focal unit in department of health service so that its capable on converting the legal commitments (policies and strategies) into the real action (integration of rehabilitation in health).

Observation and derived feelings ( views are completely personal)

Nepal is one of the world’s least developed countries where denizens of rural part of the country faces real challenge in breaking the barriers placed by geographical feudalism. Villages enveloped by undulating pathways, slope and steep landmarks could be eye pleasing for most of us but that’s challenging for natives of rural area. The wide geographical spread of rural settlements pose particular health problems where  carrying dozens of wood, water pots and cattle fodder and walking miles are some of the daily house hold chores people are engaged in. This kind of practice invites neck, back,  knee osteoarthritis and one of the major challenges that women faces is pelvic organ prolapsed.

29 year old , Parbati BK( name changed)  single mother of 3 says that she is the only bread winner of her family.  Walking for an hour to fill water and gather wood and cattle fodder has been her daily routine.  29 years old , Parbati  is a chronic case of back pain ( posterior intervertebral disc prolapsed, PIVD) . She was handed a lumbar corset and taught appropriate back exercises to easy her pain. In addition she  was also trained on proper ways of carrying load and taking frequent rest between her work. This practice has helped her subside the pain making her more confident and enthusiastic on what she performs. Sad that we cannot modify the topography but somehow it’s possible to train local health providers and support community education program on disease prevention, introducing physiotherapy intervention and educating on ergonomic training and postural care as it’s impossible to suggest natives of rural side, not to perform their activities of daily living.  Sad, we don’t have adequate number of physiotherapists in district level. This had marked a significant gap to transfer the skills and knowledge on physiotherapy service. Teaching them the proper ways of carrying wood and cattle fodder  and useful exercises can somehow offer long term sustainable solutions to Nepal’s health and development challenges. 

 Health is considered as another critical infrastructure of development. It is indeed true that only a person with a sound mind and body can think and act rationally. 

Out of many I would like to list few of the problems in health sector:

·         Physiotherapy treatment and facilities are not available as required

·         Doctors and health workers hesitate to go to remote areas

·         There aren’t enough health posts, sub health posts, primary health centers in remote areas

·         Rural people mostly rely on witch doctors

It seems to me that provision should be made to establish well facilitated health post and hospital in remote areas where physiotherapists and health workers should be encouraged to go to remote areas with good incentives.