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BLOG: Hospices across borders – Engaging young hearts and minds in palliative care

In the fourth and final part of her report from the Institute of Palliative Medicine in Kerala, southern India, Jackie Butler finds out why young people flock to help the organisation and how their volunteer model is a global inspiration.

“I think of life as a book which has many chapters, with dying and death being the final one, but each chapter is as important as the others,” declared 18-year-old Hajera, the wisdom of her words belying her own tender years.

A first-year student of English Literature at Kozhikode’s university, she spends nearly all her spare time at the city’s Institute of Palliative Medicine, where her father is a doctor.

Hajera devotes herself to helping with patient care and fundraising projects and she’s now taking a course in psychosocial support to boost the skills and understanding she can offer those who are approaching death and their families, both in the inpatient unit and in their own homes.

But it’s not only this valuable volunteer role that brings her here on the bus after college every weekday with some of her friends. It’s the feeling of camaraderie that comes from regularly meeting dozens of people her own age who, like Hajera, thrive on the feelgood factor of giving back to their community and trying to make life better for those whose time is limited. It’s clear that she, and the dozens of others visiting on a regular basis, get back as much as they give.

“IPM has given me the freedom to do my own things. I can come here whenever I want, and I can help others. The atmosphere here is so calm and peaceful and everyone is friendly,” she said.

“We also go to Death Cafes where we listen to people talking about their experiences around death and listen to stories about patients who have died.”

Hajera’s mature, matter-of-fact manner was echoed all around in the throng of young people who gathered outside the institute each evening during my visit earlier this year. Wielding paint brushes, balls of yarn, rolls of string, bamboo canes, fairy lights, sheets of card, planks of wood, saws, screwdrivers and pickaxes, they were in the thick of preparations for the Curios cultural carnival, officially launched by major Kerala movie star Mammootty, a patron of the Pain and Palliative Care Society.

It takes a huge amount of work to set up IPM’s major fundraising event for the year, a mix of music, dance, literature, art and food, which regularly attracts 40,000 people to the grounds over three days.

Some volunteers sat in clusters just outside the institute’s entrance laughing and joking as they created enormous dreamcatchers, sparkly stars and strings of colourful pom-poms to hang from branches, or made signs bearing the slogans #becauseicare, #celebratingcompassion and #beamedicine to pin on tree trunks and fences.

Others hung out in the jungle-like undergrowth, gleefully digging holes and hammering nails into temporary structures against the lively soundscape of bhangra blaring from a blaster stereo.

It crossed my mind that the noise might disturb the patients in the unit at the back of the complex, but there were no complaints and all the staff and visitors seemed delighted that they were there and prepared to engage with death, dying and hospice care while helping in a hands-on way.

Jasim was an engineer, but now works full time for the Captains Social Foundation NGO, promoting volunteerism and empowering young people, and he helps to coordinate projects at IPM.

“Our role is to encourage young people to look at how to solve problems in society through volunteering and use their creativity and potential to benefit society. They gain multiple talents by taking part in these activities,” he said.

“Here in Kerala many issues like drug abuse are becoming worse and young people are not respecting society. We want them to move from there to the next level of social commitment. There is so much future in the social sector – there is a lot of work to be done and the IPM is a great place to do it.”

National Youth Worker Rifadh agrees. A 25-year-old entrepreneur with his own distribution company, he has been a volunteer since he was a teenager and working with IPM for five years.

He said: “I feel compassionate about people. I talk with patients about death. We face real life here at the institute – the things that make us human. We visit people at home and in the inpatient unit. I work with the doctors and nurses. I am friendly and I listen, which is one of the best qualities. My presence will be happy for people.

“It works both ways. I am the person who needs the patient too. Doing this cures my heart as well. When a patient dies, I will be very sad, but gradually you learn to cope.”

He was inspired to get involved after spending time volunteering in a tribal village outside Kozhikode where he had a conversation with a five-year-old boy.

“I asked him one day what he wanted to be in the future. He said he wanted to be like me. I was inspired by that answer, and I have since taken on many activities to help others.”

For 23-year-old trainee doctor Anu, volunteering has had an important impact on her mental health and her social life, and she described herself as “addicted” to helping out at IPM, whether that’s making dreamcatchers or sitting by a patient’s bedside.

“I find that everyone coming here to volunteer finds something meaningful that they are missing; it gives us better satisfaction in life. I started coming here to meet like-minded people and the exposure is so great. We have quality times and find a community to relate to,” she said.

Anu felt quite isolated coming away from her home in Kollam to study at Kozhikode’s esteemed medical college, and was receiving counselling, but she found coming to volunteer at IPM was much better therapy.

“Empathy to patients is not discussed in my training, but here we talk about these things. Doctors often have difficulty communicating with patients. Here they train us how to be empathic and a good listener,” added Anu, who has undertaken IPM’s psychosocial course for volunteers while continuing her medical studies.

“I experienced someone dying here for the first time and it shook me. Hearing about this death I went into a dilemma about whether I was the right person to be a doctor and deal with this every day. But I decided I wanted to carry on and take a special interest in palliative care.”

The young volunteers’ time and energy is incredibly important to the success of the Institute and helps to raise the 20 million rupees (around £200,000) it costs to provide its services, which include inpatient and home care, medicines, and food, food packs for poorer patients, training programmes for doctors, nurses, volunteers and students, research and development, palliative care courses and creating compassionate communities across the world.

Sree Kumar, is a businessman who has worked all over the world. In retirement he has returned to his Kerala homeland and devotes his time to the vital voluntary position of secretary of the Pain and Palliative Care Society (PPCS), the charity that oversees the day to day running of IPM and its funding.

He sees multiple benefits in getting young people involved. As well as helping on a practical level, they spread awareness and open conversations around death among their peers, and some are inspired to take up careers in palliative care.

“We run a lot of youth-led programmes and they come up with so many great ideas. We now have a Biriani Challenge, a Cake Festival and a Sweet Festival. We cook and pack the food here that people order, and the volunteers deliver it to people at their homes. There are campaigns in colleges and workplaces, like Skip a Tea where people give us the money they would have spent on a drink, and we will use it to buy medicines.”

Not all volunteers are young. They are lucky to have people of all ages and from different walks of life giving their time in a myriad of ways, including artists, film producers and actors who utilise their popularity to spread awareness and publicise IPM’s events.

Every individual who volunteers is highly valued and encouraged to find the role that suits them best. Widow Lekshmi has been working part-time in the IPM shop for several months. When I passed by, she was happily folding scarves and arranging gorgeous handmade bags for sale.

“My husband was ill and died here,” she told me. “I wanted to do something to help but I didn’t feel I could go back into the inpatient unit. This kind of helping I can do.”

The PPCS has only one charity shop and that’s in the corridor of the institute, although volunteers do set up stalls at local events selling new and second-hand items, including clothing, and there are collecting cans in many local outlets. Most of the items on the shop shelves are new, some donated or supplied at discount rates by businesses, with some crafts, pens and umbrellas made in house by disabled and life-limited patients who come for respite care.

Like St Luke’s, the palliative care and social support provided free of charge for anyone in the community is the top priority, although IPM’s vision extends well beyond Kerala’s network of volunteer-run palliative care centres.

Sree Kumar said: “The concept of palliative care is not fully understood and there are still too many people dying in hospital intensive care units and so on. As well as running courses, both face-to-face online, we support the setting up units in other parts of India, Sri Lanka and beyond.”

People come here from all over the world and co-founder Dr Suresh Kumar now spends a lot of time visiting other states and countries to help them set up their own initiatives. Compassion and generosity lie at the heart of all they do.

“We train people first and then we support them with meetings or courses. We charge a minimal amount for our basic courses – 125 US dollars for six months. It is about reaching people even if they can’t afford it. If candidates are in very poor countries in Africa, for example, we will give free admission. For the masterclass we subsidise travel costs for poor countries.”

Visitors like me also get the warmest of welcomes. My sincere thanks go to everyone who gave me their time and their thoughts, showed me around, allowed me an insight into this very special place 5,000 miles from St Luke’s and made it feel like a home from home. I’ll be sure to return next time I’m in Kerala.

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BLOG: Hospices across borders – Centre of excellence where the doors are wide open

Jackie Butler continues her report from the Institute of Palliative Medicine in Kerala, southern India. Today she’s shadowing the outpatient and inpatient clinical teams.

Six days a week, on the dot of 8.30am, staff throw open the doors of the outpatient clinic at IPM and check who is waiting outside. Like our UK A&E departments, people are generally seen on a walk-in, first come, first served basis, although an emergency will, of course, be bumped to the front of the queue.

This is the institute’s all-important hub for triaging, registering a patient and determining their needs, something like the St Luke’s hospital team assessing and caring for patients at Derriford.

While most people will have a terminal diagnosis, the criteria to be eligible for care are blurrier in Kerala than in the UK. Physical or mental deterioration stemming from old age rather than illness, for example, is considered a valid reason to be seen. Individuals can refer themselves or bring in a family member they are concerned about, although many arrive on recommendation from the Medical College’s nearby oncology centre.

A sports hall style temporary building in the grounds of the institute, the clinic’s modest design belies its vital role. There’s just one big open space, crudely sectioned off with a reception desk, shelf units and filing cabinets, a handful of beds, a few screens, chairs and a central table where doctors, nurses and interns study patient notes and discuss options.

One corner houses Leena’s dispensing pharmacy, with the nerve centre for the home care teams tucked in behind. It’s a temporary solution that would, no doubt, be frowned upon in Britain but, in a place where so much of life is lived in the open, personal privacy isn’t such a huge issue, especially when people’s wellbeing is at stake. There are long-term plans for a purpose-built clinic but for now they make do.

If it’s a patient’s first visit then there’s lots of paperwork to fill in as the doctors and nurses build up a comprehensive picture of their life and personal circumstances, not simply a record of their symptoms, diagnosis, or medications. Once registered, the patient keeps their own logbook to chart their IPM journey so all information is available one place. Digital notes are still some way off here.

A dedicated team of six to eight doctors and 15 nurses is shared with the institute’s inpatient unit, creating a welcome continuity. On duty when I visited was Shyni, a staff nurse so passionate about providing the very best palliative care for patients that she’d recently undergone two weeks intensive training at the esteemed St Christopher’s Hospice in London.

“The atmosphere is very different in palliative care and nurses have a specific and important role. We are attached to the patient and their relatives, and you get to know them very well,” she said. “This work also gives me great scope to improve myself and it has certainly helped my confidence levels.”

In common with St Luke’s doctors, nurses, health care assistants and social support teams, clinicians at IPM take a holistic view of each patient.

“What we always look for is the thing that is most distressing them. How do they feel about their disease and their prognosis? Is their priority something physical, mental, spiritual or social? We are guided by that to address their most important issue first, because that will make the biggest difference to them,” said Shyni.

“If they are desperate to reduce breathlessness, then we will look at that. If they are in serious mental distress, we can arrange for them to see the psychiatrist who is in the clinic one day a week.”

One of her encounters soon illustrated that ethos perfectly. Lying on one of the beds was a 74-year-old widower with late-stage cancer who appeared to be in a lot of pain, accompanied by his worried son. Shyni sat on the bed and, speaking gently in Malayalam, she managed to put them both at ease, even coaxing brief smiles. After checking his records, she swiftly set up a morphine drip to ease his physical discomfort, knowing there was more to uncover.

The man was distressed, and it wasn’t about the pain. Shyni perched on the bed again, with her hand resting gently on his knee. That’s when he blurted out that he didn’t want to leave his own home, but his daughter-in-law was insisting he should move in with her and his son to be cared for.

“He is struggling emotionally and what he wishes is important. If he wants to stay at home, then we can arrange that. We can put him on an end-of-life plan and provide homecare with 24-hour cover, as well as educate his relatives to help care for him when they can,” explained Shyni, rushing off to confirm with one of the doctors and make the necessary arrangements.

Despite the crowded space, the lack of privacy, the rising heat and the important decisions being made, the pervading atmosphere was one of calm, diligence, and patience that would continue through to 4.30pm when the queue outside was gone, but only until the next morning.

Some of the patients seen during the session I witnessed here were admitted to the institute’s inpatient unit, my next stop.

In the corridor of the Institute’s inpatient unit, a three-year-old girl ran round and round in circles, laughing as she played chase with her elder brother, oblivious to the significant family event unfolding nearby. Yards away on one of the wards, her anxious parents sat by grandfather Babu’s bedside, counting his big rasping breaths. A cluster of close relatives sat on a ledge outside the room, chatting in hushed tones, sipping drinks, sharing snacks, and keeping a watchful eye on the children.

Large groups gathering to say goodbye is nothing unusual in this place where the end of life is an everyday occurrence. For Dr Ashna, it was a top priority on her rounds to reassure the family that they were witnessing the natural process of dying and that Babu was not in any pain or discomfort. By evening he would be gone.

“It’s distressing for the family and the staff more than the patient,” Ashna explained later. “He will not be so aware of the impression he is giving.”

There are 30 beds in the unit, grouped in wards of three cubicles each with a patient bed, a put-you-up for visitors and a cabinet for belongings, but they are rarely more than half occupied to keep things manageable. Like St Luke’s at Turnchapel, the unit is generally reserved for the most complex of cases, patients needing special pain or symptom management or those who have no family to support them at home at the end of life. The unit also provides regular respite care for those living with life limiting illnesses and injuries.

Turnover can be rapid. When Ashna came on duty at 9am after a few days away, almost every one of the 12 inpatients was unknown to her. Care coordinator Meena, a calm and reassuring presence, updated her on all the new arrivals, mostly referred from the onsite outpatient clinic or the nearby Medical College Hospital, and they talked in detail through each person’s clinical notes together.

As the two women set out to visit patients, a trail of six student doctors and visiting clinicians tagged along, ready to look and learn, confirming the institute’s commitment to sharing knowledge and expertise through specialist education.

Among them, Dr Dum Kumari from Green Pastures NGO Hospital in Nepal in the Himalayas was there with a colleague for ten days as a hands-on element of IPM’s specialist National Fellowship course for clinicians.

“I’m very interested in palliative care, but the concept is so new in Nepal and there’s huge potential for development,” she said. “We have an Australian palliative specialist at the hospital who has encouraged us to take the course, and it’s been excellent.”

We trailed from bed to bed, patient to patient – several in the late stages of cancer – witnessing Ashna’s purposeful and thoughtful engagement and Meena’s motherly understanding, making sure everything was being done for each person to be as content and comfortable as possible, and answering their loved ones’ questions.

As the round drew to a close, a young woman arrived with a baby on her hip to take her husband back to Assam in the north of India. The 37-year-old labourer had been working on a construction site in Kozhikode, sending all his earnings back to his family, when he became very sick and was given a terminal diagnosis. His wife had left their three other children with relatives to accompany him on his final journey home.

I checked to see who else had a tear in their eye and it was universal. Death may be normal here, but people’s stories pull on the heartstrings of the most seasoned professionals, just as they do at St Luke’s.

As a charity we know well that making this kind of care available, free of charge for all, relies on the loyal support and goodwill of an army of fundraisers and volunteers. We’ll meet some of IPM’s recruits and discover how education is a top priority in the final part of this series, which you can read here.

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BLOG: Hospices across borders – Compassionate care comes to the doorstep

Jackie Butler continues her report from the Institute of Palliative Medicine in Kerala, southern India, 5,000 miles from St Luke’s. Today she joins a home care team visiting patients and families in the community.

Every year 2,000 new patients register with the Institute of Palliative Medicine in Kozhikode which serves the city and a surrounding area of 10km and a population of around 600,000. Nurses, doctors, and ancillary staff make around 20,000 patient contacts annually via the outpatient clinic, the inpatient unit and home visits.

Echoing the work of medics and volunteers in more than 100 local Pain and Palliative Care Society branches across a patchwork of rural villages, or panchayats, in the wider district, as well as hundreds more across the state of Kerala, the pioneering IPM is also a globally recognised centre of excellence, empathy, and education.

I was invited to follow some of the charitable organisation’s clinicians on their day-to-day visits and consultations. Beyond shared values and aims, it’s people who make an institution, and the professionalism and kindness I witnessed in Kerala reminded me straight away of St Luke’s own wonderful teams.

Staff here wear no uniforms or name badges, so it was initially impossible to tell the nurses from volunteers, the doctors from visitors, but all became clear once I’d been introduced. Language was tricky at times too, although compassion and respect go beyond words. Most staff here understand and speak at least some English, but day to day communication happens in Malayalam, the official language of Kerala. While I can understand simple words like hello (Namaskaram) and thank you (Nanni), the fluent flow of one of India’s most complex and hard to master tongues is way beyond me, so I was grateful for the doctors’ and nurses’ willingness to interpret and explain.

In the welcome cool of a shaded stone-built single-storey dwelling Dr Nayana stood by the bedside of an 80-year-old man. Suffering from renal problems, heart failure and diabetes, he sat silent and skeletal in a sleeveless vest and loincloth, the cracked, painful, and itchy skin on his feet and hands, arms and legs, all too obvious.

Nurse Sanjana handed the man’s wife a bottle of medicated oil and demonstrated how to gently massage it in for him – a small but significant way to make her husband a little more comfortable and ease her own concern.

Half an hour earlier we’d set off from IPM’s outpatient clinic in one of their two compact ambulance vehicles, generously sponsored by local community groups and steered by a dedicated driver with taxi-like knowledge of the area. There are usually two runs a day, backed up by an emergency service provided in association with three or four other palliative care providers in the wider district.

Masked up and ready for action, I was accompanying Sanjana and Nayana, who divides her professional time between palliative care here and her specialism in ENT at the hospital, on their morning home visits.

With a fat wadge of patient files wedged by the dashboard, we’d been bumping down narrow, windy roads fanning out from Kozhikode’s main roads, the equivalent of twisty single-track lanes in the depths of the South Hams, where grass grows in the middle of the road and rabbits play dare. Here, instead of high hedges and fields, they are lined on either side with trees, homes and paths that snake away into the undergrowth. At one point we were stalled for ten minutes by a baby calf that didn’t want to move; cows of all sizes are considered sacred by India’s Hindus.

It felt a little alarming to know that the vehicle was loaded with a plastic boxes full of controlled opioids and other commonly used drugs from Leena’s IPM pharmacy. Even though the containers were locked, I knew this scenario would never happen at home, but the priority is to give patients what they need quickly, reminiscent of the “just in case packs” often arranged for St Luke’s patients to avoid waiting for a prescription.

A nurse travelling solo would usually spend an hour or more with each patient, often once or twice daily depending on need, delivering medical and personal care, dealing with catheters, bed sores, bathing and sometimes armed with food parcels for families who are struggling. Volunteers visit separately to give psychosocial support to both patients and their families, often seeing people regularly over a period of months, like the befriending volunteers and professionals of St Luke’s Patient and Family Support Service.

But today’s were doctor-led medication and review visits – akin to duties usually undertaken by our Clinical Nurse Specialists – and time was limited. We started at 10am and by 1pm we had been to 10 patients’ homes and Nayana and Sanjana were scheduled to make another 10 visits in the afternoon.

The people we saw were approaching death for many reasons – stroke, dementia, cancer – and needed help with complex combinations of physical and mental health problems. Some had blood test results to consider, side effects of medications, both physical and psychological, to address.

Most homes here are detached and surrounded by their own land, even if small, many with just two rooms, kitchen and bathroom. Some places can only be reached on foot, and with few fences dividing territories, we traipsed through other families’ yards and gardens, negotiating menageries of dogs, cats and chickens.

Medications could generally be found lined up on the patient’s bedroom windowsill – brown paper packets of blister packs collected together in Tupperware boxes – and Sanjana’s first action was to check the patient’s blood pressure.
Nayana rested a comforting hand on the arm of a 77-year-old grandmother as she prescribed antibiotics for this family matriarch, sinking rapidly through broncho pneumonia, with added pain from swollen legs and skin lesions.

In a rundown house nearby, another elderly woman lay in bed confused, distressed and bruised after yet another fall, surrounded by photos of her son, daughter-in-law and grandchildren. Painkillers, kind smiles and reassurance were all Nayana and Sanjana could offer, acknowledging back in the ambulance that death was close.

After three hours every visit on the list was ticked off, except for one address where the only one home seemed to be a teeth-baring guard dog. We made a quick exit, and as we drove back to IPM I reflected on how comfortingly familiar my experiences with the clinical teams had been.

Barring differences in environment, heat and language – and the drugs in the back of the ambulance – the overriding feeling here, on the other side of the world, was of the same expert and human holistic support our teams deliver day in and day out at St Luke’s.

Click here to read the next instalment of Jackie’s time in India.

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BLOG: Flete House – rare Open Garden event is rich in precious memories

Look behind the scenes at our Open Gardens fundraising events and you will often find individuals whose lives have been personally touched by St Luke’s.

When the magnificent Flete House, near Modbury, throws open its spectacular gardens and grounds exclusively to raise funds for us on Sunday 30 July, resident Adrian Wardle will be remembering the compassionate care his wife, Amanda Audley, received from our nursing team at home five years ago.

“Amanda was well looked after at Derriford Hospital, then she was able to have St Luke’s visit her at our home in South Brent. That was something you don’t forget,” said Adrian.

“It’s all very well having medical intervention but the personal help from St Luke’s carried a lot more weight and made her terminal illness more bearable. She had a very peaceful passing.”

A semi-retired publisher and expert on the history of the Grade I listed house and its equally impressive grounds, Adrian worked for more than two decades as deputy manager at Flete, where Amanda was the longstanding and much respected assistant housekeeper before she was diagnosed with breast cancer.

Adrian now lives in a flat on the ground floor at Flete with Pippin, the little tabby cat he and Amanda got a few months before her death. From there  he can enjoy every day the beautiful and eclectic vistas that are being shared, for one afternoon only, with St Luke’s supporters.

The 12 acres of Grade II listed and elegantly landscaped parkland grounds include the charming Italianate gardens, a well-stocked shrubbery, water gardens, and a host of impressive specimen trees that take pride of place on the garden map, not forgetting the panoramic views of the picturesque South Hams countryside beyond.

On the day itself, Adrian will be escorting a limited number of lucky visitors on a rare and fascinating guided tour of the grand reception rooms of the gothic styled house, home to the aristocratic Mildmay family from the late 1800s, which was designed to host distinguished guests, including royalty. The rest of the handsome building, parts of which date back to the 16th Century, is now divided into 29 private leasehold apartments.

The annual event, part of St Luke’s spring and summer Open Garden series sponsored by NFU Mutual Plymouth, is a golden opportunity for anyone who loves beautiful historic landscapes, but it has become something of a pilgrimage for people who took their first breaths at Flete House when it became Plymouth’s maternity hospital during the Second World War.

Adrian explained: “Lord Mildmay was only living in a corner of the house at the time. When Freedom Fields Hospital was bombed, he offered Flete House as a maternity hospital for the city. Around 11,000 babies were born there between 1941 and 1958 when the unit returned to a rebuilt Freedom Fields. People do love to come here to see where they were born.”

The gardens will be open from 12 noon to 5pm on Sunday 30 July, with plenty of parking available close by, toilets on site and guide dogs only allowed.Admission is £6 per person and under 16s go free. Teas, coffees and fresh homemade cakes will be served, and St Luke’s Compassionate Friends are bringing a pop-up stand where visitors can learn more about this initiative to support people who are bereaved. You’ll also find an exciting display of vintage cars on the driveway, courtesy of the MG Owners’ Club.

Wayne Marshall, St Luke’s Open Gardens Coordinator and New Partnerships Lead said: “We are so grateful to everyone at Flete House for giving us exclusive access to this stunning Devon estate, allowing visitors to experience the unique gardens and raise funds to support St Luke’s important work in the local community. We can’t wait to welcome everyone.”

Click here for more information on Open Gardens

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BLOG: Hospices across borders – How India’s pioneers made a global model

St Luke’s Jackie Butler discovers intriguing differences and reassuring similarities visiting a hub for palliative care and compassionate communities, 5,000 miles from Plymouth.

Shuddering to a halt outside Kerala’s Institute of Palliative Medicine on a searingly hot and dusty afternoon, I couldn’t help wondering whether my rickshaw driver had taken a wrong turn and delivered me to the art college by mistake.

Around a porticoed entrance, reminiscent of grand residences from the days of the Raj, dozens of Mod-style scooters were double parked, jostling for a shady space. Amid a babble of excited chatter, laughter and blaring Indian pop tunes, a crowd of animated young people spilled out through the surrounding jungle-like gardens.

As first impressions go, it was both surprising and heart-warming to find a party atmosphere outside a palliative care centre. The scene underlined how life goes on side by side with death, in the same way that Indian culture traditionally keeps the sick and elderly in the heart of the family.

I’d left behind Kozhikode’s noisy city centre, its parades of colourful shops and stalls, beeping horns, and hair-raising near misses as an endless flock of people strolled the streets and darted across roads in 34C heat.

Easing into the sprawling, greener, suburban territory of the esteemed Medical College, my bright yellow tuk-tuk taxi trundled by a long row of modern multi-storey hospital units where a sea of patients, relatives and staff talked on mobiles, munched spicy snacks out of newspaper cones, rushed to appointments, ran for overflowing buses, or propped up bandaged friends. Some pushed wheelchairs or lifted poorly patients out of ambulances on stretchers – a series of dramatic snapshots, come and gone in a flash.

As we passed the huge maternity centre, a young man in smart checked shirt and crisp white loincloth strode proudly out of double exit doors, grinning from ear to ear. With one arm he gently steered his wife through the crowd to a waiting car; in the other he held a bundle of snow-white blankets with a tiny face poking out – a new life just begun.That image of a baby meeting the world for the first time stayed with me as the chauffeur of my three-wheeled chariot finally turned into a winding side road, bumped a few hundred yards down a leafy driveway, stopped outside what he declared was my destination, unloaded my suitcase and demanded 300 rupees (£3).

In a place where people come to find peace at the end of life, I hadn’t expected such a vibrant welcome. Dozens of youthful smiling faces surrounded me, one girl explaining that they were creating the structures and decorations for Curios, the centre’s major annual fundraising festival – actually only a fragment of what these incredible young volunteers contribute, but more of that later. Eager to create a good impression and point me in the direction of my kind host Ilyas Hameed, co-ordinator of the learning academy, they gave me an instant flavour of what a unique and special place IPM is.

I’ve been coming to Kerala for more than a decade, enchanted by the natural beauty of its sea and forest landscapes, its historic towns, and the humanity of its people. In terms of location, scenery, and atmosphere, this is India’s Devon and Cornwall. Literacy here is around 94 per cent – the best rate in the whole of India – basic health care is free, and social reform, regardless of religion or caste, has been a priority on the local government agenda for decades.

So, I wasn’t too surprised to discover that the state is also streets ahead in terms of end-of-life community care and that a forward-thinking centre of excellence, cited by the World Health Organisation as an aspirational model for the rest of India and beyond, was rooted in the city I’ve flown into on many occasions. Of all the palliative care in India, some 90 per cent happens in Kerala, which is home to just three per cent of the country’s population. The opportunity to visit the hub of it all while I was on a trip nearby felt too good to miss.

Like St Luke’s, it all started with enlightened doctors on a mission to ease the suffering of those with life-limiting illnesses, acknowledging that nobody should die alone or in pain and distress. Here it was the community model that came first. Dr Suresh Kumar, who had practised in the UK, and Dr Rajagopal established the charitable Pain and Palliative Care Society in Kerala in 1993, inspired by Dr Cicely Saunders and the British and US hospice movements.

They adapted their vision to the sprawling rural geography of the state and the available resources, recognising that caring for the dying was fundamentally a social issue with medical aspects. They agreed it was important – and more practical – for patients to stay close to their families, whenever possible. From a small outpatient clinic in at Kozhikode’s main hospital, the society developed the pioneering Kerala Model for compassionate communities, distinguished by its efficient network of hundreds of neighbourhood palliative care groups across the state.

Led by willing and well-trained volunteers, supported by local doctors and nurses, and financed by donations – mostly regular micro amounts given by individuals – they provide free care, medication, and psychosocial support for all, while empowering close relatives to help keep their dying family members comfortable at home.

The Institute of Palliative Medicine, opened in 2003, was the ambitious but obvious next stage – a 30-bed specialist inpatient unit, with outpatient clinic and home care teams serving the city and surrounds, combined with a pioneering, high level palliative care training centre for the whole of India and beyond, both overseen and managed by the charitable society.

I got another heartening surprise as I entered the building’s cool and tranquil stone-floored central corridor and was greeted by a plaque acknowledging that Cornwall’s WB Davis Charitable Trust funded the construction of the institute on land provided by the medical college. It felt like a special bond linking this part of the world to our doorstep, united by the same aims and an ongoing spirit of public generosity.

Philanthropist Bruce Davis was managing director of the Davis Derby family business that had shipped thousands of Humphry Davy flame safety lamps out to India over more than a century. At home in Cornwall his interest in pain relief and end of life care following the deaths of his mother and a close friend from cancer was instrumental in the foundation of St Julia’s Hospice in Hayle in 1982.

Inspired by a nurse who witnessed community palliative care on a visit to Kerala, Bruce and the trust decided to spread their wings and pursue key projects in India. IPM was the first of many similar endeavours in India that he supported in his lifetime. Bruce died in 2018 and every year the institute awards a prestigious Gold Medal prize in his name to a promising junior doctor in the field.

After checking in at reception, it was time for a bite to eat. In the very basic canteen, they serve the plainest of foods for easy digestion by patients – thin dahl, a few boiled vegetables, a poppadom, a mound of plain fat-grained rice, with a milky chai to wash it down…not quite what I had in mind with the Arabian Sea stuffed with tasty fish and seafood down the road!

The shared table filled up around me and I found myself chatting with students taking IPM’s course for carers that’s open to all. A trainee nurse had her sights set on a career in Europe and wanted to broaden her scope, a teenage mother was keen to learn to take the best care of her Down Syndrome baby whose additional health problems mean his lifespan is limited, and a middle-aged businessman was seeking a more “worthwhile path in life”.

Two young friends from the university’s BA History course who regularly volunteer at IPM settled down opposite me to practise their excellent English conversation, putting my five words of local Malayalam to shame.

Leena, the thoughtful resident pharmacist, watched me wrestling with my bland meal and asked what curry I like and if I can take it spicy. The next morning, she arrived with a little tiffin tin packed with the most delicious homemade prawn masala to liven up my breakfast.

Five thousand miles from home in this enclave of kindness, and feeling more than a little jetlagged, I strolled through humid fairy lit gardens to my guest accommodation and a welcome rest before a couple of days shadowing the IPM clinical teams.

Meet them in the next article which you can read here.

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BLOG: Pink parade makes memories and miles matter for hospice care

A vibrant parade of a thousand warm-hearted walkers strode through the city on Friday night (7 July), sharing cherished memories of much-missed friends and family members, and raising vital funds for St Luke’s Hospice Plymouth.

Midnight Walk entrants of all ages and abilities gathered at Plymouth Argyle’s Home Park stadium as twilight fell, ready to pound the pavements along the charity’s choice of three-mile, six-mile, and 13.1-mile routes.

On the backs of their official bright pink T-shirts, walkers had written the names of lost loved ones they would be thinking about during the evening, many of whom had received care from St Luke’s teams at the end of their lives.

Many jazzed up their outfits with glow in the dark make-up, colourful net skirts, flashing bunny ears, boas, garlands and headdresses, and a lively musical warm-up led by Plymouth based fitness class Cheezifit adding a fun festival atmosphere to the tender, uplifting annual event, sponsored this year by Michael Spiers and Marchand Petit.

All walkers marched up Outland Road on the first leg to Manadon roundabout, passing walkers’ poignant memories on this year’s new Reflection Mile. Some turned around here, retracing their steps to complete the shortest, most family-friendly route, while others continued up to Derriford before doubling back to complete the six-mile challenge.

With a circular route, equivalent to half marathon distance, added to the mix for the first time, this most demanding route saw the hardiest of Midnight Walkers continue via Eggbuckland to Marsh Mills, along the Embankment and through the city centre, before returning triumphant to Home Park.

For some it was a family affair with two or three generations journeying together. Alex Baggott from Plymouth was walking with daughters Hannah Baggott and Charlotte Bennett, in memory of her husband Ian. A former police officer with Devon and Cornwall Constabulary and super fit marathon runner, Ian developed a rare and incurable lung disease and sadly died in April this year.

His wife and daughters wanted to show their appreciation for the care he received from St Luke’s at home team by taking part in Midnight Walk. Before setting off on the 13.1-mile route, Alex and her girls were delighted to meet up with Debbie Hutchinson, the St Luke’s specialist nurse who was there for Ian and the family when they needed it most.

“It isn’t until you actually need St Luke’s and use their services, that you understand how vital and special they are. With Debbie’s help we were able to look after Ian at home after his last stay in hospital,” said Alex, a nurse herself.

“She really couldn’t do enough for us. It was the most awful time of our lives, but we didn’t have to concern ourselves with anything other than caring for Ian.”

Lynne Shell, whose husband Pip was cared for at St Luke’s specialist unit at Turnchapel, before his death last year, was walking three miles with daughters Nicola and Helen, and granddaughters, Rosie, five, and Molly, eight, and on Friday had already raised £400 in sponsorship.

It was little Molly who spurred the family to take part. “Children at school were talking about fundraising for other charities. She came home and asked how she could raise money for St Luke’s. It’s fantastic for the girls to be part of this. They have been so excited seeing the amount on our Just giving page go up.”

Accepting their medals at the end of the three-mile walk were St Luke’s clinical nurse specialist Alex Chapman, her six-year-old daughter, Olivia, and her mum Jen Gibson, who used to be a community staff nurse at Torpoint, with a special interest in palliative care.

Jen said: “There is hardly a local family that hasn’t been touched by St Luke’s. It is such a fabulous resource for the area. Many times I have referred patients for advice. My special reason for taking part is that six weeks ago I discovered I had a leaky heart valve and couldn’t even walk 25 yards, but I’ve done all right tonight!”

Alex, who joined the hospice 18 months ago, and walked with colleagues last year, added: “It’s Mum’s most proud appointment for me, working for St Luke’s.”

Meanwhile, Olivia was enjoying her late night out, fuelled by popcorn and chocolate treats, and looking forward to telling her classmates at Cornwood School all about her Midnight Walk adventure with Mum and Nanna.

Chrome Alexander and his wife, Dee, Navy personnel from HMS Drake and HMS Raleigh, were remembering his father, Montgomery, who died from cancer 18 months ago at home on the Caribbean island of St Vincent, where palliative care is limited.

“We have a friend who works as a nurse for St Luke’s so we know it is a fantastic organisation and that’s why we decided to sign up for Midnight Walk. It is not just the people who are ill who are looked after, but their families too,” said Dee.

Chrome added: “I would have liked my dad to have had that support because it takes a lot of pressure off the family, but there was nothing like that available there.”

Emma Harrison walked 13.1 miles as one of a team from R T Fitness, a closeknit group of women inspired to support the important services St Luke’s provides. She was paying tribute to her late mum who was cared for at home by St Luke’s before her death from cancer aged just 58.

“When you are going through that with a family member you don’t know where to turn. You really need someone there who can understand and not judge. St Luke’s gave me comfort and I knew that in her last hours she was not suffering.

“She had worked for the NHS for the majority of her life and she didn’t want to die in hospital. She wanted to be at home in the house she was born in, with her family and friends.”

Head of Fundraising at St Luke’s, Penny Hannah, said: “It was incredibly humbling and heart-warming to see so many walkers out there on the streets of Plymouth, remembering their loved ones and feeling proud to be part of such a magical and bonding evening.

“I would like to thank every single walker for their compassion and kindness. We are also hugely grateful to our wonderful sponsors Michael Spiers and Marchand Petit, and to Plymouth Argyle as hosts of our event village. We couldn’t run Midnight Walk without their support.

“The money and awareness raised is so important for the future of St Luke’s as we continue to offer our specialist care and support, free of charge, to those who need us most, at home, in Derriford and in our specialist unit at Turnchapel. Thank you again to everyone involved.”

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BLOG: How experience of St Luke’s care inspired Midnight Walk co-sponsor

When Gordon Maunder’s mother, Christine, was approaching the end of her life, St Luke’s was there by the family’s side, enabling her to spend her last days, comfortably and without pain, in her own home.

This memorable first-hand experience of St Luke’s services inspired Gordon, company chairman of Marchand Petit estate agents, to make the business proud co-sponsors of this year’s Midnight Walk.

Gordon describes his mother as “small, dark and dangerous”, and a lover of playing bridge and gardening. She had been receiving treatment for ovarian cancer before learning that her illness was terminal. A dear grandmother and great grandmother, she died in February 2022 aged 88.

“She was only 5ft but no pushover! The one thing she didn’t want was to go into hospital to die,” said Gordon. “It was massively important to Mum to be in her own home at Wembury that she absolutely loved.

“She knew she had reached that point of no return… it was one of those terrible moments. My sisters and I were absolutely at our wit’s end, not knowing what to do and how to help Mum. When the ladies from St Luke’s came through the door it was like the Ghostbusters had arrived.

“They took control and everything they did was efficient and carried out with compassion. Mum was immediately made to feel comfortable. She was a mad keen gardener, and the dining room was made into a bedroom for her so she could see her garden out of the window.

“For all our sakes we were immensely grateful. We knew which stage of the journey we were at, and we felt less stressed by the fact that she was out of pain and less stressed herself. We took it in turns to constantly be with her, and my father, Graham, who now lives with us.

“St Luke’s provides a fabulous service. It doesn’t matter who you are or where you are, they are there for you.”

Gordon will be at the Midnight Walk start line at Plymouth Argyle’s Home Park this Friday night to cheer on his wife, Penny, 14-year-old daughter, Hettie, and a team of Marchand Petit colleagues, including Sarah Baines, Sarah Douglas and Helen Harris, as they set off on the six-mile route.

Helen will be striding the streets in memory of her Dad, who received care from St Luke’s at home before his death eight years ago.

“Dad had a brain tumour and St Luke’s was wonderful for our family at the time and helped him remain at home,” said Helen, Associate Director of Marchand Petit’s Modbury office. “I’m walking to support the hospice and to raise awareness to help others. I don’t think you really understand what St Luke’s does, and that it’s not just an inpatient unit, until it touches you personally.

“It’s a charity that is close to my heart and it’s nice to get involved in something like this and raise money for such a great cause. St Luke’s is a huge resource for people in their time of need, when they don’t really know what’s available. They were invaluable for us, and very supportive for friends who have also lost their parents.”

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BLOG: Ella’s Midnight miles for Grandma Doffy

A little girl has set her sights on fundraising in memory of her Great Grandma, so that other families can have the same support she did during such a difficult time.

Ella Honey Casey, 6, from Leigham, will be walking the three-mile route at our Midnight Walk on Friday in memory of her Great Grandma, Dorothy Honeychurch – or as she knew her – Grandma Doffy, who died earlier this year.

Ella Honey’s mum Emily, said: “After being diagnosed with terminal cancer in March this year, Doffy took the brave decision to be looked after by St Luke’s in April. Doffy was there for two weeks over Easter and the staff couldn’t do enough for myself, Ella and my youngest daughter Daisy. Doffy was treated with so much dignity and respect and we were given so much support and comfort from everyone, from the volunteers and support workers to the nursing staff. It is hard to put into words how kind and compassionate St Luke’s were in our time of need.

“Whilst we were at Turnchapel we talked to the nurses about the Midnight Walk. Ella was so excited that she could help other families to have the same amazing care we had at such a challenging time.”

Ella Honey will be walking alongside her mum and Nana (Clare Honeychurch) on the night, bringing together three generations in memory of a fourth.

The determined six-year-old has been hard at work fundraising and has already surpassed her £100 fundraising goal on JustGiving.

Emily added: “She is very excited and has been asking friends and family who knew and loved Doffy to help with fundraising. In preparation for the walk, she has been doing lots of extra long walks around Wembury and Saltram ready for her big adventure!”

Like Ella Honey, many of our Midnight Walkers are walking in memory of those special people who are no longer with us, while striding forward to secure the future of our hospice services at home, in hospital and in our specialist unit.

Registration closes for our Midnight Walk, sponsored by Michael Spiers and Marchand Petit, on Tuesday at 5pm, so it’s your last chance to sign up. Already signed up? If like Ella Honey, you can raise at least £100 in sponsorship we can achieve collectively our goal of delivering enough for our St Luke’s hospice teams to care for 100 families at home. Wouldn’t that be amazing?

Sign up and set up your JustGiving page here.

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