IN the sky overhead, a massive Himalayan golden eagle soars effortlessly on the thermal currents.
The snowy, rocky backdrop to its spiralling trajectory is no less spectacular. A place of gods, people say about mystical Machapuchare – and it’s easy to understand why.
The distinctive towering pyramidal structure of the mountain is considered one of the homes of Lord Shiva and for that reason its summit should be left holy, untouched and unclimbed by humans.
On this early morning, a whiff of white cloud drifts from Machapuchare’s pointed summit and those of the surrounding mountains in the Annapurna massif. The scale and majesty of the scene before us is both humbling and almost achingly beautiful.
It’s one that reminds those of us captivated by its grandeur that life itself is something special, something to be cherished and respected.
Before I met him, Ramesh Pariyar had spent almost three months in the near darkness of the squalid corrugated tin-roofed shack that he and his mother Lakshmi call home.
Throughout that time the visual glories of the Himalayan mountains and foothills that surrounded him had been cut off from the 23-year-old.
Instead, his days had been spent sprawled on a crude wooden bed with a tattered mattress on a dirt floor with only a radio for company.
His only activities were a constant need to shift position to reduce the bedsores that added to Ramesh’s misery and watching his pet kitten Siri scrabble playfully around in the dimness of the hut.
Ramesh was only 17 the day six years ago when, working as a welder, he fell three storeys from a scaffold on a construction site in Nepal’s second-largest city of Pokhara. It was a moment that would change his life irrevocably. In the days, weeks and months that followed, Ramesh would find himself close to death, undergo surgery and endure terrible pain from sores only to face the realisation that his spinal cord injury had left him paralysed from the waist down.
As we talk, he sits in his wheelchair on a precarious ledge at the doorway to his room overlooking the steep drop below and squinting in the bright sunlight to which his eyes have become unaccustomed.
“I have seen people more vulnerable than me,” Ramesh says stoically, as we chat about the struggle he and his mother face to make ends meet and what he will do with the rest of his life. He finds a kind of solace in knowing that there are those worse off than him, he tells me.
“At least my hands are still moving, my brain is working,” he says, as Siri tugs at a thread on his trouser leg and his mother busies herself in the tiny vegetable plot that clings along with their shack to the very steep hillside. The location, even for an able-bodied person, is daunting.
For Ramesh it’s tantamount to a prison sentence. Even getting from his bed into his wheelchair and inching out into the fresh air and sunshine is only possible with the help of Dr Dum Kumari Pun and community nurse Purna Maya Gurung whom I have accompanied on their clinical visit.
Both are part of the Sunita (Justice) Project run from Pokhara’s Green Pastures Hospital, which was opened in 1957 by the International Nepal Fellowship (INF) one of Nepal’s longest serving international NGOs.
Taking its name from the circumstances of a young Nepalese girl who had to care for both of her parents when they became ill, thus restricting her own life’s choices, the Sunita project is about improving access to quality healthcare in rural Nepal to some of the poorest communities.
Its blueprint was created by EMMS International, Scotland’s longest-serving international healthcare charity which, since 1841 from its base in Edinburgh, has sought to bring such healthcare to hard-to-reach people across the world.
The three-year project in rural Nepal which has just ended was only possible thanks to generous donations that were matched pound for pound through UK Aid Match which also doubled donations to EMMS International’s 2020-21 Every Girl Matters appeal.
The Sunita Project also focuses on the provision of palliative care, the very mention of which makes most people wince or draw the wrong conclusions. In great part, this results from its immediate association with things we fear most – incurable illness, the vulnerability of our loved ones, loneliness, dying.
But palliative care is about so much more than that and during our lives the chances are most of us will have a family member or friend diagnosed as chronically or terminally ill or in need of specialist care resulting from a painful or debilitating condition.
Seen then from the perspective of the Sunita Project in Nepal, if such care is about one thing more than anything else, it is about adding life to days, not just days to life.
Ramesh is a case in point. Here is a young man with a life-changing condition but who is not terminally ill. A person who could easily add a full and constructive life to his days ahead should the provision of support allow.
Ramesh tells me he knows there is income-generating work that people with disabilities can do.
What if that vocational rehabilitation and training was fully available, what would he like to do? I ask him. “Since I was a kid I’ve always been interested in things to do with electronics. There’s a lot of work related to that I could do even from a wheelchair,” he tells me.
“Keeping busy with productive work would also help to keep myself away from negative thoughts. You get busy with work and the mind will be fresh every time.”
Ramesh and his mother receive disability benefit of only 3000 Nepalese Rupees (NPR) – about £16-17 a month. Much of the time, they rely on food support from neighbours while the shack in which they live is also owned by someone else, making their existence even more precarious. In short, they could lose their home in an instant should the owner chose to take it back.
Ramesh says he really values the support from the Sunita medical team. The obvious health monitoring such as wound management and nutritional checks aside, it also helps break the monotony of his isolation.
Doctor Pun and nurse Gurung both stress the extent to which Ramesh’s case ticks all the boxes in terms of the need for palliative care both physical, social, emotional and psychological.
Pun says: “There are no other siblings or any close relatives to look after him, so he has to depend completely on his mother which means we have to adopt a fully holistic approach in our provision.”
Gurung has worked for the INF for 28 years, seven of them with the Sunita Project. She says: “Last visit, I told him, read books. And then he started to read books and write down his aims.”
Pun says Ramesh “must have so many dreams and hopes just like any 23-year-old but his situation remains immensely challenging”.
Before I depart I ask Ramesh if he stays in touch with the friends he told me he had before his accident.
“I had friends while I was working. Everyone used to drive a car, drive a JCB, do welding jobs. I used to talk to them about my work. Now I don’t have contact with them,” he says, adding that his mobile phone – the only real way of staying in touch – broke and he cannot afford to replace it. It was yet a further reminder – were it needed – of his isolation and why palliative care has to provide more than simply medical support.
Dr Dan Munday is a consultant at Pokhara’s Green Pastures Hospital palliative care and chronic illness unit and adviser to the Sunita project. He’s also an honorary senior lecturer at Edinburgh University in palliative medicine and also recently, medical adviser with EMMS.
I put it to him that a lay person’s understanding of what palliative means is perhaps misunderstood.
“I think we need to see it as being an integral part of healthcare, not something out on its own,” he said. He believes there is a risk of healthcare becoming too focused and “technical” such as “which drugs to give in which condition and not actually on the broader aspects of how do we engage with people.”
Munday maintains that colleagues across the medical profession can learn from having more patient-centred interpersonal skills, and “that’s the thing that palliative care really offers in terms of strengthening health systems”.
A few days after we talked, I watched those skills in action, as one of Munday’s colleagues, Dr Amrita Shrestha, a paediatrician and palliative physician at Green Pastures Hospital, engaged with one of her patients, an 11-year-old girl called Sharon. Sharon has been diagnosed with dystonia, an often-painful movement disorder that causes the muscles to contract.
“She’s been with us for about five to six weeks now, because the family just didn’t know what to do”, Shrestha tells me. “I think it’s really important to understand the family as a whole, as a unit, the background and what is achievable so that we can, discuss that. We can have a shared decision-making, and that’s very important to us here.”
Time and again during my stay in Nepal I was to witness this innovative and holistic approach that the Sunita Project has fully embraced. Nowhere is it more apparent than in the training and deployment of Female Community Health Volunteers (FCHV’s).
Drawn from local communities they are trained through the EMMS/INF partnership and play a crucial role in augmenting government health posts and provision in remote areas where people are often invisible and marginalised.
What the Sunita Project has done in Nepal is pioneering, its significance recognised by those who attended an international conference hosted by INF and EMMS earlier this year in Kathmandu and entitled Palliative Care for all in Rural Nepal: Leave No-One Behind.
Medical practitioners, palliative care specialists and delegates from across the world came, including Scotland and the Global Health Academy at Edinburgh University, such is the recognition of the work done by the Sunita Project’s philosophy and approach.
Worldwide it is estimated that approximately only 14% of people who need palliative care currently receive it. In the UK itself, 90% of people who die would benefit from palliative care, meaning more than 600,000 people each year need it.
What the Sunita Project has achieved, then, is special, not least in one of the poorest most rugged and remote countries in the world.
Nepal is a country where people take their time. It’s country, too, where much is made of respect for the living and the dead. The Hindu and Buddhist view of death as rebirth and not an “end” has much to do with this.
A few days before leaving Nepal, another encounter made me think again about attitudes to life and the death that awaits us, no matter who or where we are on this planet.
It came in the Pashupatinath Temple in Kathmandu that sits on the banks of the Bagmati River. This Hindu temple is a place where many people come to openly cremate their dead and mourn in full view. Great care is taken with the last rites of a body here, but as in the case with most such rites the world over, these are as much for the living as they are for the dead.
Pashupatinath has its own hospice where some in the last weeks, days or even hours of life come before their cremation takes place. There on the banks of the Bagmati, funeral pyres every day burn the bodies of the deceased laid on wooden stretchers often draped in orange cloths and carpeted with vivid marigolds.
It may to some at face value appear a place of death but it also teems with life. Children playing in the river, a never-ending stream of worshippers, sacred grazing cows and bulls and troupes of mischievous macaques monkeys all add to the sense of life at full tilt.
Empathy, compassion and respect are the prevailing priorities at Pashupatinath, in the same way such values have underpinned the provision of palliative care in the Sunita Project. For those who come to the temple this is not an end but a beginning.
For more information on the work of EMMS International, call 0131 313 3828 or email info@emms.org
