Tag Archive for: healthcare

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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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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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Holly Heroines – A beautiful light in everyone’s life

This year’s Midnight Walk will be a poignant one for so many. Especially for a group of women walking in memory of a special friend described as ‘a beautiful light in everyone’s life’.

Holly Hacker from Ivybridge, was diagnosed with cancer six years ago. Sadly, in January this year, at the age of 40, Holly passed away after bravely fighting for so long.

In Holly’s honour, a group of her friends decided to get a team together to take on our Midnight Walk on Friday 7 July to keep their memories of such a beautiful friend, daughter, sister and auntie alive.

Holly Heroines7 is made up of seven women including Holly’s two sisters-in-law and her close friends. The teammates are: Laura Hacker, Maggie Hacker, Tracey Keslake, Natalie Potter, Molly Joslin, Laura Reed and Kelly Thomson.

Holly’s close friend, Kelly Thomson has described the special memories they have of Holly. She said: “Holly was a kind soul, her smile could light up a room. Her brother Aaron has commented that the picture on our JustGiving page stops him in his tracks when he sees it on the news feed. That’s how I remember her…smiley.

“She was a good friend, sister, daughter. She would see her Mum every Saturday for a fry up and then go off shopping together. She had a good sense of adventure but drew the line if it involved water or heights. Although we did get her on a river cruise when visiting Scotland!

“She was very generous, caring and truly a great friend. She was always there if you needed her any time of day. She would stand her ground if needed and could be firm. She had a special look that you knew if she looked at you this way she wasn’t amused, something I saw quite often being the joker of the trio!

“She really was a beautiful light in everyone’s life.”

Having taken part in our flagship event previously Kelly and teammate Tracey jumped at the opportunity to take part. “Having done the Midnight Walk before, as soon as we knew it was happening I already knew we would be doing it. Although I was hoping Holly would still be with us to do it too.”

The walk itself, kindly sponsored this year by Michael Spiers and Marchand Petit includes three different routes of 3 miles, 6 miles, and 13.1 miles. The women, like so many others, see it as an opportunity share precious memories and make new ones.

“I think we are all looking forward to spending time with each other on the walk and sharing stories and memories”, said Kelly. “We haven’t seen each other since the funeral, so it will be good to catch up with them. The girls are all wonderful individuals, and they are all like old friends already.

“The Midnight Walk has such an amazing ambience as you know that people there are doing it in memory of someone. So the support you get from strangers is amazing. It means a lot to us to raise money for St Luke’s as they do such an amazing job. They supported Holly and made her comfortable in her last couple of weeks and they showed great compassion to her family and friends. It can’t be an easy job for them, but we are so grateful to them for caring for our beautiful friend.”

The inspiring team are currently at the top of our team’s fundraising leaderboard, having already raised a fantastic £1,195 for our patient care. If every single Midnight Walker commits to raising £100 like this fabulous seven, the event will bring in enough for our St Luke’s hospice teams to care for 100 families at home, just like Holly’s.

Kelly added: “We are so overwhelmed by everyone’s generosity so far, and I know Holly would too be so proud. She is so missed daily but her memory will go on.”

If the Holly Heroines have inspired you, then why not sign up your team today for our Midnight Walk and make Midnight miles matter. Click here to sign up.

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How chaplain Pat ‘happens by’ at Derriford Hospital

Jackie Butler meets a special person whose calm and comforting presence is hugely valued by St Luke’s Hospice Plymouth hospital team and those they care for.

The first thing that stands out about Pat Brenton as she walks through Derriford Hospital is her gentle, unhurried pace. All around her doctors, nurses and support staff stride purposefully to their destinations, while she strolls mindfully, always alert to anyone along the way who might welcome a kindly face and a confidential chat.

Some days she’ll leave her desk in the chaplain’s office to visit a ward and only get as far as the first bench along the corridor before being drawn to the side of a young lad worried sick about his grandma who is dying upstairs, or a woman in the throes of shock after losing her husband.

Impromptu encounters and casual arrivals underpin her approach as the hospital’s palliative and oncology chaplain, a role in which she works closely with St Luke’s Hospice Plymouth hospital team.  She likes to “happen by”, making it easier for people to welcome or reject her presence in the moment, although she does also pre-arrange some appointments.

“The less I say, the better. It’s about letting people have the space, especially St Luke’s patients,” says Pat. “They don’t necessarily always want to share their thoughts with friends or family. We just turn up and they can talk if they want or not if they don’t. I am not going to cry or be judgmental. We have that little bit of distance, which helps. Then, once they have consented to our visit, we can go back again.”

Pat, her four chaplaincy colleagues and a pool of trained and experienced volunteers are there for everyone in the University Hospitals Plymouth NHS Trust – patients, visitors and staff. Between them they visit up to seven out of 10 patients and families who are being supported by St Luke’s nurses and doctors. They try to make sure appropriate pastoral and spiritual care is there for those that want it, backing up the hospice’s compassionate expertise and advice, and the care of Derriford’s own clinical teams.

On Tuesdays, Pat joins the St Luke’s virtual morning meeting where she’ll listen in to Clinical Nurse Specialist Julie Ayers, Nurse Consultant Martin Thomas and the rest of the clinical team as they discuss existing and newly referred patients on their long lists. Bypassing clinical, care or discharge details, as the nurses and doctors talk, Pat picks up on each patient’s potential emotional or spiritual vulnerabilities, mostly sensing which individuals she should visit. It’s a seamless collaboration, fed as much by instinct and subtle looks as words.

“I like to think that I can get there before anyone asks me,” she says. Amid discussions around each patient’s condition, their prognosis, their discharge home, or transfer to St Luke’s at Turnchapel, and their loved ones who might be struggling, Pat will occasionally chip in to say she or a colleague have already been to see a particular person and will return, or that she’ll simply “happen by” to introduce herself and listen.

“I try to follow up as many as I can during the week with help from my colleagues. We have a good rapport with St Luke’s and an excellent trust between us and I really value their generosity to share this with us.”

Each person’s circumstances are unique, from complex scenarios where people’s lives have been tipped upside down by a catalogue of illness and painful bereavement, to those who are resigned to their terminal prognosis and seeking to live out their final days as fully as possible.

When there’s an urgent referral, the St Luke’s team can call on Pat or her colleagues 24 hours a day – one of them is always on duty. “They can refer someone to us any way they want – email us, ring us up or bump into us in the corridor,” she says.

Pat, who was a nurse many years ago, was ordained as a Church of England minister 18 months ago.

“I did a course in listening with the hospital and wanted to volunteer, but they didn’t have a vacancy straight away. They said I could come and help in the office in the meantime, so I did. When I became a pastoral care volunteer, I knew this was what I wanted to do. I spent more and more time on the wards. They couldn’t get rid of me! Gradually I realised my calling was to be here as a chaplain.

“I think I saw 240 relatives in the first year before I was ordained, working with former palliative and oncology chaplain Andy Barton before taking on the role myself,” adds Pat, who also now co-teaches the department’s training course for volunteers.

Although the roots of her vocation lie in her longstanding Christian faith, she stresses that her daily work has nothing to do with religion in the conventional sense and everything to do with humanity, compassion, and discretion. Pat wears a white collar while she’s on duty but doesn’t think it gets in the way.

“We approach in a very gentle way, so people feel comfortable and are able to be themselves. They can just be real because they know we are genuine and focusing on them, not ourselves. I try especially hard when I see someone is fearful, particularly at the end of life.”

With that thought in mind, it was fascinating to silently shadow Pat as she set off on her rounds visiting three patients in different wards who’d been mentioned at the St Luke’s meeting, insisting that, like her and the rest of the team, I take no phone, camera or notebook.

While a widow with a shock terminal cancer diagnosis waited for her transport to St Luke’s at Turnchapel – where her mother died a few years ago – she was relieved to quietly share with Pat the anxiety of knowing that it would be her final journey.

In a side room with a butterfly motif on the door to honour a patient at the end of life, Pat knocked gently to introduce herself to a man and his wife as they sat either side of the bed where his elderly mother was slipping peacefully away. They clearly found comfort in the chaplain’s presence and the chance to confirm the old lady’s faith and love of hymns.

Pat’s final call was a return visit to a man with a life-limiting illness and a bad fracture who the day before appeared to give up hope. But today he was chatty and animated, buoyed up by the St Luke’s team’s belief that he could return home to live out his last months or weeks with the right help. After firmly declaring his non-belief in God, he told Pat he felt the need for something spiritual to hold on to.

Back at the team’s office, next door to the chapel, we joined the other chaplains and volunteers to reflect on the morning and talk about anything that stood out or concerned us. That kind of support and back-up is vital when you’re listening to stories that are often extremely emotional, and Pat also makes sure she and the team open their listening ears to all St Luke’s team members.

“We try to support them confidentially on an individual basis, as well as collectively,” she says. “I will make a conscious effort this week to ‘happen by’ if someone in the St Luke’s team seems upset about something or not themselves.

“They do carry a huge workload. Where do you put all that emotion? They can come and dump it here if they wish. It can sometimes be hard to share with your team when everyone is in the same boat.”

Julie and the St Luke’s team feel privileged to have such a great working relationship with the hospital chaplaincy and access to their valuable support.

“It’s so reassuring for us to know that Pat and the other chaplains are there, not only for our patients and their families, but for our team too. Pat is a really calming presence and an incredibly warm and patient listener, and she seems to know exactly the right time to ‘happen by’, as she calls it,” says Julie.

When a St Luke’s colleague died suddenly at the end of last year, Pat held a quiet period of reflection in the chapel for the team, based on what they wanted – a poem a reading, and a candle lit in memory. The St Luke’s nurses and doctors also take time out on a weekly basis to come together in the hospital chapel for reflection, lighting a purple candle in remembrance of patients who have died.

“The chapel is a lovely place where everyone can come and sit in peace,” adds Pat, whose quiet, thoughtful, and confident demeanour seems to put everyone at their ease wherever she goes.

She and her colleagues are glowing examples of how St Luke’s and Derriford are working hard together as one big team to achieve the very best holistic care for patients who find themselves in hospital as they approach the end of life.

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Reflections from CEO Steve

With my retirement as St Luke’s Chief Executive coming up on 4 May, I want to take this opportunity to say what an immense privilege it has been to serve at the helm of our hospice for the past six years.

It would be far too difficult to home in on just one or two memories that I will take with me from my time as CEO, and my years as Deputy and HR Director before that, so instead I’ll share the overriding feeling I am left with as I approach retirement.

It really has been way more than a job – it has been the most incredible journey, working alongside our amazing staff and volunteers, and I speak from my heart when I say I am very proud of what we have achieved together, always putting the best interests of our patients and their families at the centre of what we do.

I want to say a huge thank-you to everyone I’ve had the pleasure of knowing and working with at St Luke’s. The dedication all our staff and volunteers show to our community day in, day out is second to none, and I say this recognising that maintaining such a high calibre of service is often very challenging in the face of growing demands on our hospice team. I am so grateful to have ended my career at a place where everyone cares so much and is working towards the same, shared goal.  

The decision to step away has not been an easy one, but I am retiring at the time that feels right for me, professionally and personally, and with the assurance of knowing that St Luke’s incoming CEO, Christina Quinn, is absolutely the best pair of hands to receive the reins from me.

She will be supported by the same great group of senior management colleagues I have been fortunate enough to work alongside.

For those of you who don’t already know, until last November Christina was Chair of our charity’s Board of Trustees. She comes with not only her trademark dynamism and many years’ experience at senior level within the NHS, but also the knowledge, wisdom and insight gained from six years of leading our governing body, during which time we have weathered the pandemic and gone through transformation.

I want to thank current Chair of Trustees Charles Hackett (and former Chair Christina), and every other member of our board for their support over the years. Being a trustee is a massive responsibility and they work tirelessly to steer our charity safely towards our vision. We could not do what we do without them.

As I prepare for my retirement (I’m still getting used to that word!) and then ‘decompressing’ from the huge responsibility of running a hospice, I want to let you know that I am not thinking of this as ‘goodbye’. While I won’t be interfering in the running of St Luke’s, I’ll be following St Luke’s with interest and great affection – and you’re bound to see me pop up, getting muddy at Tour de Moor and no doubt volunteering at Midnight Walk.

In signing off this last message as St Luke’s CEO, I want to say thank you again to everyone for their support in making sure St Luke’s continues to be the safe haven our community needs for anyone diagnosed with, or affected by, life-limiting illness.

Thank you.

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Inside our holistic special task force the Patient and Family Support Service

While our nurses, healthcare assistants and doctors are the daily frontline ambassadors for St Luke’s compassionate and holistic end of life care, behind the scenes another small and highly skilled team are helping patients and their loved ones deal with the intense emotional pain and personal hardships a terminal journey can bring.

Recently renamed the Patient and Family Support Service to better reflect what the team does, this band of social workers, support workers, students and trained volunteers are multi-faceted champions, making sure those in distress are offered the help that’s right for them.

It can be overwhelming when someone learns they have a limited time to live, not just for the person themselves but for all those closest to them. At the heart of everything the team does lies the desire to make things just a little bit better for the patient and their family, amid the sadness, pressured relationships, physical constraints, mental health problems, past trauma, learning disabilities, substance abuse or financial troubles they may be facing, while also upholding their legal rights and protecting their safety.

The team’s highly experienced social workers are service manager Helen Koffi-Young, Danielle Brown, Emma Hancock and newcomer Sarah Bedaton. They are joined by social and bereavement support worker Sue Martin, children and family support worker Lisa Carter and a core of around a dozen amazing volunteers, trained in befriending and bereavement support skills. Together they are a consistent and inclusive St Luke’s presence, following people wherever their journey takes them – from hospital or home to nursing home or the hospice specialist unit.

“A terminal diagnosis makes a massive impact on the whole family and we deal with a lot of mental distress. We try to be preventative and look at people’s strengths and current support, then what support the person feels will be useful to them, what support we can give and what may be there in their network already,” explains Emma. “Recently we have observed a big impact from Covid and people getting a late diagnosis. This can impact on people’s level of emotional distress and can at times lead to crises in their mental health.

“People are not just their illnesses. The illness is something that happens to them. It’s our job to ask and really understand what matters most to that particular person and look at what their goals are, big or small. How, for example, could the day be made slightly better for them?

“We give people a voice and let them know they are heard. We let them talk about their anxieties and fears without judgment. We use active listening and empathy, helping people process their feelings about what has happened in a safe space. We use counselling skills and other therapeutic approaches, but we are not a counselling service, nor are we there to replace social services but work alongside them.

“We are involved in training and increasing awareness of safeguarding for adults and children, when there is abuse, neglect or self-neglect, and we are there as a consultancy service to support St Luke’s doctors, nurses and healthcare assistants.

“We work with social services to support people who may be subject to or at risk of abuse or neglect working to support and empower them and put them at the centre of decisions about their lives.”

At any one time the team can be dealing with as many as 150 people – patients, carers and the bereaved – building trusting relationships that can go on having a valuable impact in their most difficult days.

Sometimes it’s simple actions that make a big difference. For example, if someone has received a terminal diagnosis and doesn’t have family or friends close by, having one of the team’s befriending volunteers visit once a week for a chat, telephone regularly or take them out for coffee can help them feel they are not alone as they approach the end of life.

However, many of the situations they face are extremely complex. Even if someone’s troubles initially look straightforward, there can be a deep layer of issues beneath the surface that needs the expertise and experienced input of the team’s social workers and support workers.

For patients, the emphasis is always on understanding what is important to that person and their family. There’s an urgency to try and address matters that are causing the most anxiety, whether emotional or practical, and they work closely with other St Luke’s teams, also connecting and signposting to other agencies when it’s appropriate, such as the CAB for financial issues.

“We look at someone from the point of view of their entire life, their environment and their close relationships, and make sure they are empowered and know they have choices. We look at what can they do for themselves, physically and emotionally and try to build on their own strengths, while assessing the level of risk involved,” says Emma.

“For instance, getting themselves washed and dressed might be painful and tire someone out, but if they have a little help with the ordinary things, maybe it can free up that time and energy for something they enjoy doing.

“Sometimes a patient will have been the sole carer for someone with learning disabilities or mental health issues. Is there someone else who can look out for them? Our team have worked with many people who are looking after an adult child and worked with social services to get the support they are going to need.”

Emma, Danielle, Sarah and Helen keep an acute eye on the law and people’s human rights, especially legalities around mental health and mental capacity, elements that often come into play when deciding where someone should be cared for.

“The Mental Capacity Act is used when someone is not able to make a particular decision for themselves due to issues with their cognition,” says Helen. “It’s about upholding people’s rights while balancing their safety. If someone wants to go home, we assess if it is safe for them to do so. Is there a risk that they will fall over? Can they call for help? We always look at ways that we can try to minimise risk to enable people to have their wishes met, without being overly restrictive. For example, if someone has advanced dementia, is there someone who can support them to remain at home? We look at what we could do to get that person what they want. And if we can’t make it safe for them, we help to explore other options.”

Sustaining carers is a hugely important part of the team’s work. “It’s really important we listen to carers about their needs, provide emotional support, help them with difficult conversations around care and getting support packages from adult social care and the NHS,” adds Sarah.

The demand for bereavement support has significantly increased. When someone close has died or is going through the final stages of life, a period of bereavement support from a staff member or bereavement support volunteer can help family members with the initial stages of grief, or boost their strength to cope a little further down the line when the reality of the situation has sunk in.

“We are often working with people who are in a crisis and facing the most difficult time in their lives. We try to give continuity in bereavement support, with three initial sessions before we review their needs, and we can provide up to six where needed,” says Sarah.

Sometimes the team will need to refer the person on to an outside voluntary organisation for ongoing support, or to specialist mental health services if their distress deepens, working with partners in the community to get the right level of support for people’s individual needs.

When it’s a child or young person affected by bereavement, they will try to begin supporting them before their loved one dies, helping them to make and hold onto unique memories of that person through St Luke’s own Patches initiative. If it’s their parent, grandparent or carer that St Luke’s is looking after, they will work with their school or nursery and sometimes CAMHS NHS mental health services, to make sure there is a solid network around them and plenty of support and advice for whoever will be caring for them, especially if a child has extra needs because of a learning disability or any other additional needs.

Patient and Family Support Service may be a more fitting name for the team, but no title can adequately describe the magnitude of what they do on a daily basis, which also extends to best practice and how services are developed, teaching inside and outside St Luke’s.

Helen says: “It is a privilege that people let us into their lives and we all value the precious time they give us. I am really proud of the social workers, support workers and volunteers. They all make such a difference in the work they do and without fail are skilled, compassionate, empathic and effective advocates for the people they support.”

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Mini ponies bring big smiles visiting patients on the ward

Tiny Shetland ponies Peanut and Wizzle spread a huge amount of joy when they trotted into St Luke’s specialist unit at Turnchapel last week.

Patients and their families were surprised but delighted when the knee-high young therapy ponies turned up on the ward, brought in by Charlotte Pine of Dartmoor Carriages at Shaugh Prior in a special visit organised with Sister Karen Thorrington.

“We have a lot of very, very poorly patients but the looks on their faces and the enjoyment they got from the visit was amazing,” says Karen. “I think some of them thought they were hallucinating!

“Peanut and Wizzle went right up to the patients and nuzzled them, and they were able to give them a good smooth. They had their heads right in the bed with one patient and he was feeding them carrots.”

Rachel Marriott, a care assistant on the specialist unit who has a lot of experience with horses, was thrilled to be there to help the visit go smoothly and witness the uplifting effect on patients and family members, as well as staff.

“It was really lovely and a huge success. Something like this brings happiness even if just for five minutes,” she says. “Animals do have a therapeutic effect on people and the ponies were so gentle, placing their noses in the patients’ hands. One man had a lot of tubes coming out everywhere and we were a bit worried the ponies might disturb them, but his face just lit up when they came in and he could feel their breath on him.”

One of the most moving responses came from the mother of a younger patient who almost missed Peanut and Wizzle. She got back to the hospice from a hospital appointment just as Charlotte was about to load them on the trailer to go home. But she stopped so the patient could spend time with the pint-size pair and it had a profound and heartwarming effect.

Rachel recalls: “The mother turned around to me and said it was the first time she’d seen her daughter smile in a long time. And that smile made such an impact on her. She said it had made her day.”

Patients on the unit will often have visits from their own pets – cats, dogs, rabbits and even, on rare occasion a lamb or a full-size horse – but this is the first time the therapy ponies have been in, and it’s something Rachel and Karen would love to see repeated regularly.

Karen says: “We were doing a lot of extra little things like this, but Covid put a stop to it all. I see this as a starter to us getting back to normal.”

Charlotte was also delighted by the response on her first visit to St Luke’s. She says: “It just gives people a little bit of sunshine, lets them see something different and it gives them something to talk about. Even if they haven’t touched the ponies personally, if they’ve seen them walk through the corridor or seen someone else with a smile on their face it can brighten their day up. It’s just lovely.”

Peanut and Wizzle joined the Dartmoor Carriages team last year and, as well as continuing their therapy work, the sturdy little ponies will be trained for carriage driving and take part in some of the other special moorland experiences Charlotte offers, including cream tea and pub outings by horse and carriage, children’s parties, weddings and proms. And they are sure to be back on the ward at Turnchapel before too long.

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Being there was Dr Jeff’s greatest gift

Consultant and former medical director Dr Jeff Stephenson has announced his retirement from St Luke’s after two decades with the hospice. As this important era ends, we asked him what brought him into palliative care, what kept him at St Luke’s and what the future holds.

When he arrived at St Luke’s just over 20 years ago, Dr Jeff Stephenson was stepping up to his first post as a consultant, fresh-faced and full of confidence that he was going to make things better for people who were dying.

As he prepares to say farewell to both St Luke’s and his medical career, it is with the benefit of huge and humbling experience and the knowledge that he doesn’t have all the answers, the smallest things often matter most, and that St Luke’s must keep developing to achieve its aims.

“In all my time here the most valuable thing I have been able to contribute is my presence,” said Jeff. “It’s often not so much what you do, it’s about how you make people feel that is important. The tiniest act can make people feel loved and valued and accepted. Families and patients have been amazed that you spend time and really listen.”

Jeff recalls the daughter of an elderly patient being overwhelmed when he got down on his knees by the bed to talk to her mother.

“I do that a lot, but it took her by surprise. It’s about showing people that they matter, and they are not just another patient to you. And that’s much harder to do in mainstream medicine.”

Originally from County Durham, Jeff had few experiences of people dying when he was at medical school in the late 1980s and early 1990s and there was no specific palliative medicine training at that time. It was a memorable encounter with a friend that first made him think seriously about the final part of the human journey.

“There was a girl training in the year ahead of me who I knew from church. I remember seeing her two or three months into her first job in geriatric care and she was in floods of tears. She said: ‘They just keep dying on me.’ I thought perhaps I ought to get some preparation for that.”

As part of his standard training, Jeff elected to spend several weeks at a hospice in Edinburgh where he found himself working alongside a particularly enlightened and inspirational doctor. “That was the first time I had the thought ‘I would really like to be like you’.”

After qualifying, each new job and element of training took Jeff and his wife, Lois, a primary school teacher, to a different location, gradually moving further south and west. Landing in Exeter to complete his palliative medicine training, Jeff spent time working at St Luke’s and loved it. The couple were also keen to bring up their four children in beautiful Devon, settling in Ivybridge.

“There was a sense of calling to come here,” he said.

Recognising his potential, St Luke’s created a post for Jeff working alongside Dr Mary Nugent, one of the charity’s early pioneers in holistic hospice care. He grasped the challenge and never looked back, devoting his career to the collective vision of a community where no person has to die alone, in pain or in distress.

It hasn’t been an easy mission, but Jeff has been spurred on by his colleagues and the respect he has for them, as well as St Luke’s over-riding culture of compassion for all.

“I have been humbled and inspired by the people I work with and the care I see in action throughout St Luke’s, what the human potential is and how people go the extra mile for others.

“I’ve been privileged to work in an environment where you see incredible love and care being shown and that is what has kept me here.

“I have learned that people can cope with situations you would think would be unbearable and they do it with such strength and courage. No one should have to deal with some of the things my nursing colleagues are dealing with day in and day out. It’s inspiring.”

Over the decades, Jeff has seen many changes, in how services are run as well as the journeys patients take.

“As people live longer there is a lot more comorbidity now. People are living with long term conditions for far longer than they were. Ultimately all people will die, but many will now have more complex problems when end of life is approaching.

“There are so many new treatments coming online. Some of them are very expensive and offering only a few weeks or months of extra life, but people will want to be offered them. There is still a temptation to over-treat when what someone needs is a frank discussion about what is really important to them.

“One of the sadnesses is increasing bureaucracy and that we spend more and more time justifying what we are doing. It feels like we have far less time to be with people on their journey than when we started. People are coming to us later, and sicker, and there are limits to what we can do.”

Jeff has encouraged the focus of St Luke’s care to broaden out from the specialist inpatient unit at Turnchapel and into the community, with the premise that people should be able die comfortably at home surrounded by family and friends if it’s what they want and the right support is there for them. He believes volunteer power and education are vital for a sustainable future.

“We need community engagement to try and get nonprofessional sources of support for people. Going back hundreds of years, the community would gather around to support people going through dying and bereavement. There is still a lot of goodwill, talent and skill out there that could be motivated in looking after our neighbours in this difficult phase and we need to find ways of motivating volunteers.

“I think in terms of changing cultural attitudes to dying and opening up a conversation about dying, young people are the key. There is a tendency to try and hide death from children because we think they cannot cope with it. Actually, as our work in schools shows, when approached in the right way, youngsters are really well able to cope with discussions around mortality. It is the way to go over the next few years – after all, they are our future nurses, doctors and care professionals.”

There has been ongoing debate nationally about whether hospices should be entirely government or NHS funded to ensure everyone has access to the same quality of end of life care. It’s something Jeff would resist.

“Here it is all about the whole person. It is not simply the symptoms. It is all the other stuff around that. That is the advantage of being a hospice and a charity. You could argue that what we offer is essential care and it should be funded entirely by the NHS. But having charitable status gives us freedom in terms of innovation and development. Of course, we would like more funding from the NHS, but we don’t want to give up too much control. One area of development is collaborating a bit more with other hospices in our region, which we have already begun to do.

“When looked at our vision a few years ago we acknowledged that it’s no good having just a few patients getting a Rolls Royce service of excellent quality of care when others are not getting it. What can we do to make sure everyone can have an adequate level of care?

“It is not necessarily about St Luke’s providing that care, which is why education and community engagement is so important, as well as thinking outside the box about how to maintain a sustainable approach to funding. There is a limit to how much a local community can fundraise, which is why we are now looking at business ventures that are going to provide longer term income.”

Jeff did have mixed feelings about retirement, especially after the unsettling effects of the pandemic. But he says he is ready and confident that the medical team is in fine fettle to carry on the incredible work of St Luke’s without him.

“I’ve been a doctor about 30 years and working with the dying for over 20 years. I’m ready to move on, but will be sad to leave this working environment, which has been wonderful.

“The reaction of people to the fact that I’m going soon is probably the most humbling thing. I was not your typical medical director and I’m probably not your typical consultant. At times I have wondered whether I am doing a good job at all. But it’s so much about presence and obviously that has been thought to be enormously valuable by people.

“I feel lighter than a year ago at the prospect of leaving. No service is dependent on one person, but one wants to go feeling things are left in reasonable shape. It’s now looking very optimistic and hopeful.”

So, what does the future hold for Jeff after his departure at the end of April?

“Death and dying does colour your perspective and it’s now time to rediscover Jeffrey,” he said.

It’s been a year of engagements and weddings for Jeff and Lois’s children. Following the fourth wedding in 9 months in a few weeks’ time, he has a good rest planned, before embarking on his next adventure – ordination as a Church of England priest with the aim of part-time ministry. As a regular churchgoer he says he is “badging up” what he does already, swapping medical care for pastoral care.

Before that Jeff has some sincere thanks to express: “I would like to pay tribute to those I have worked with at St Luke’s, and to thank Steve Statham and George Lillie and the rest of the Senior Management Team. I have always felt enormously supported. It has been humbling and inspiring to work with everyone.”

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Meaningful midnight miles will benefit local hospice care

Meaningful midnight miles will benefit local hospice care

St Luke’s iconic Midnight Walk is back for 2023, shining a light on precious memories of lost loved ones while supporting our compassionate care.

Hundreds of generous and caring walkers will be taking to the streets of the city wearing distinctive pink T-shirts on Friday 7 July in a poignant and colourful celebration remembering those family members and friends who are no longer with us.

Funds raised will help us continue our vital work providing specialist care for terminally ill people at home, in hospital and at our specialist unit at Turnchapel, as well as emotional support for their families.

Route options for 2023 – three miles, six miles, or 13.1 miles (the equivalent of a half marathon) – open up the walk to the whole family, from young children, teenagers and occasional strollers through to seasoned long-distance striders of all ages.

Entrants will leave from and return to Plymouth Argyle Football Club’s Home Park stadium, gathering as evening falls and setting off towards Derriford and beyond between 8pm and 9pm, depending on the distance you’re walking. This year a Reflection Mile at the beginning of the route will feature entrants’ words of remembrance about friends or family members who have died, and there’s also an option to sign up to be a Midnight Walk VIP, with lots of extra benefits.

Penny Hannah, Head of Fundraising, said: “While Midnight Walk is a poignant occasion, it’s ultimately a celebration in honour of those we have lost, and it always has a lovely, positive atmosphere. I’m delighted that we’ve made some exciting changes and additions this year that will make it more special and inclusive than ever, and we’re very grateful to our new sponsors Michael Spiers, along with Marchand Petit.

“Whether you have taken part in our event before or are participating for the first time, we can’t wait to see all our supporters striding out in their pink T-shirts. What really makes the night for everybody though, is that they’re doing what they can to help local families.”

Regular registration costs £24 for ages 11 and over, and £12 for ages 10 and over. You can sign up at www.stlukesmidnightwalk.co.uk.

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Championing St Luke’s quest for integrated care that works

Integrated care is a hot topic throughout the health and social care world. From GPs to hospitals, community care to voluntary groups, there’s a common focus on how different agencies can work together to deliver the needs and wishes of each individual patient, in an effective and timely way.

Every day we hear about strains in the overall system and stories of people suffering unnecessarily across the UK. At St Luke’s we’ve taken to heart the part we can play in that bigger picture, and we now have our own dedicated integrated care facilitators whose aim is to secure the best and most fluent pathways for every patient who is referred to us, as end of life specialists.

The challenge Sara and Sam have taken on is to build on existing and potential strengths to benefit all our patients and their families. Whether that’s helping to create a seamless transition between the three strands of St Luke’s compassionate expert care – in hospital, in people’s homes and in our specialist unit – or linking patients with social care providers and voluntary community organisations that can help in other ways, the idea is to break down barriers and make useful links and partnerships that really make a difference.

Their posts are at the centre of a two-year pilot scheme to identify, map out and build good relationships with all the health, social care and specialist providers – both professional and voluntary – available in St Luke’s wider catchment area, including supporters of Plymouth’s Compassionate Communities and Compassionate Friends initiatives. The idea is to arm Sara, Sam and their colleagues with as much contemporary information and as many connections as possible so they can champion terminally ill patients, help them achieve their preferred place of care and death, prevent unnecessary, undesired or prolonged hospital admissions, and find innovative solutions to smooth transitions.

Sara already has a solid grounding in end of life care from her five years as a health care assistant with St Luke’s Urgent Care Service (EoLUCS), and she also benefits from eight years working alongside paramedics on frontline emergency services.

She had a valuable personal insight earlier this year when a family member was cared for by St Luke’s. Sara explained: “What was lovely was that she was looked after by the St Luke’s Derriford team, then she came home and had fabulous involvement from the Clinical Nurse Specialist and a one-off visit from the Urgent Care Service (EoLUCS) team to get her comfortable, before moving into the hospice for her last weeks of life. She had fantastic care throughout. The teamwork between the three areas was great and really highlighted what we are trying to do.”

Sam, meanwhile, is employing the experience she gained in developing and streamlining services during her 11-year career as a therapy radiographer, both in the UK and New Zealand. She was drawn by the opportunity to make a real difference to patients and expand her field of experience and is taking courses in care planning with Plymouth City College. Since October and November, the women – both mothers with small children – have each been working in their new roles three days a week, crossing over on Wednesdays.

Any end of life journey can enter periods of improvement, as well as deterioration, along the way, and one of Sara and Sam’s most vital tasks is easing the transfer between St Luke’s and other services, making sure nobody slips through the net.

Their input is already having a positive effect for St Luke’s Urgent Care Service (EoLUCS) team and those they look after, enabling a much smoother flow between appropriate sources of care for patients and their families, making sure no one is left without the support they need, while cutting waiting lists and allowing more end of life patients to be seen earlier in their journeys.

Urgent Care Service Nurse Jo Davies said: “Having Sara and Sam here takes a lot of anxiety away from the families and from the urgent care team in the long run. In theory we should just stop visiting someone who no longer needs urgent care input, but where is the heart in that? But if we stay for a longer time, we are not looking after people on our waiting list.

“For example, before Sara and Sam were appointed, we had a patient living over on the moors who had stabilised, but we could not find a package of care for them because there was no alternative in their area. We were with that patient for a long time when our services were not actually needed. Because of that we had other patients we could not get to.”

When a patient’s symptoms are under control and their condition is stable, rather than deteriorating, the team can call on Sara and Sam to discuss, establish and source the practical or emotional help they need at that moment in time, always keeping the door open to return to St Luke’s care when appropriate.

Jo added: “Now that transition process is so much quicker, and we are better able to get to the people who are most in need. The level of care someone needs is not always clear cut, and you need a bit of time to assess what is going on. We can take them on, see how they are, and the patient and family feel immediately comforted and supported.”

Sara and Sam cite a recent example of a woman who was thought to be days away from death, but after home visits from the Urgent Care team her quality of life improved so much that she didn’t need the specialist service, but still needed to feel supported.

“If St Luke’s and Urgent Care were stepping back, although remaining in the background, it was important for us to find the right service she needed at the time. Now she needs Urgent Care again, so our job is to make that transition back easy too.”

Once someone is given a terminal diagnosis it can be difficult to navigate care and advice services and, in the future, the ICF team would like to be involved in these early stages of a patient’s journey.

“We’d like to be there and explain that they can have a lot of help, but it might not always be from St Luke’s. They can call on voluntary organisations for things like transport or someone to do the shopping or pop in for a chat.”

Their aim to help patients and families feel supported from the first point of call with St Luke’s until the end of their own unique journey, recognises that many people won’t initially need the specialist care we offer, but they probably have wishes or desires that could be met by other providers locally, so the more contacts and information they have in their toolbox, the better.

Their growing knowledge includes accessing and developing links with NHS Continuing Healthcare and linking in with Personal Health Budgets (PBH), Adult Social Care and Personal Assistants (PA) allowing patients to have some choice around their care needs at end of life.

“We’ll be working out how a package of care is going to work for a patient, tying in our own care with other charities and organisations as well. It is really about catering for each individual,” they said.

“What care would work for them, what are their circumstances? People think that getting carers in is the only option, but they might only need a personal assistant once a day, and that could be a local volunteer.

“There is stuff we can’t help with, but we can find somebody who can. The first couple of months in this job was us contacting organisations and finding out what is available out there. Once you scratch the surface you realise there is a lot more help available than you realise and most people are unaware of it. There’s a big mix of small groups, especially in more rural communities, with people helping each other.”

Amongst these, Sara and Sam highlight the well-established Brentor and Moor Compassionate Neighbours as a really good model of neighbourhood support that works closely with St Luke’s.

“Their volunteers they do a lot of day sits for our patients and quite a bit of education on end of life in the community. But no group is too small for us to connect with.”

What people want could be something simple like someone needing a wheelchair, suitable transport and a Blue Badge so they can continue going to watch their favourite football team, or someone who would love the company of a visitor to talk to for an hour or two a day.

Sara and Sam’s referrals have been mostly internal so far, but they have recently had contact from GPs wanting to put their patients in touch. 

“We’re always happy to hear from groups in the community who can offer support to people with terminal diagnoses. We went to the Social Isolation Conference in Plymouth recently and met a lot of great organisations there. We’re keen to make as many links as we can.”

Jen Nicholls, Nurse Consultant and Head of Community Services, described the appointment of Sara and Sam as a great example of how St Luke’s as an organisation listens to its staff and cares about what is happening at the heart of the workforce.

She said: “The ICF role developed from a Community Team away day where the team identified a gap in provision. The role helps support people in having a choice at end of life by exploring all the available care and resources that are already within the community. This role complements the great work Judy Horne and Anne Dixon (Community Development) are already doing in developing a community where it is a compassionate place for everyone affected by death, dying and bereavement.

“By the ICFs working collaboratively with our partners, other stakeholders, and the voluntary sectors, we are striving to align with NHS England’s Ambitions for Palliative and End of Life Care: A national framework for local actions 2021-26, working towards the six identified ambitions of care. Most of all, that is supporting our patients and their families to have choice at the end of their life and support from a variety of services, developing the personalised individual care needs centred around the patients and their loved ones.”

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