When time is short, it’s often the little things that make the biggest difference.
One patient’s ambulance transfer from Derriford Hospital to St Luke’s specialist unit at Turnchapel last week turned into a very precious journey indeed when the crew took a detour to grant her wish for one last look at the sea she loves.
Nick Thomas, a highly experienced NHS senior manager, has been announced as the new chair of St Luke’s Board of Trustees.
The retired deputy CEO of University Hospitals Plymouth is passionate about quality and believes St Luke’s has a pivotal role to play in raising the standards of end of life care across the wider local system, while maintaining its own well established commitment to service excellence.
He takes over the voluntary role from Charles Hackett, who had been chair since December 2022 and previously served as a member of the board for five years.
“It is a massive privilege to take on a role such as this because St Luke’s has such a huge reputation,” said Nick, who has enjoyed a rich career encompassing multiple aspects of health and care at UHP, including planning, IT, estates and finance.
“You can stop almost anyone on the street in Plymouth and they will have a story to tell about St Luke’s and it’s always positive, which is remarkable. I cannot think of a more prestigious charity to be involved with.”
Originally from Llanelli in South Wales, Nick has lived and worked in Devon for nearly 30 years, becoming part of the community in Ivybridge and in Plympton, where he and his wife now live.
He first came across St Luke’s in the late 1990s as part of a Common Purpose development initiative for board level managers, building a network around how Plymouth is run as a city through core areas like housing and health.
“That is when I first discovered the impact the work of St Luke’s has on end of life care. Then, during my time at Derriford, I became much more aware of St Luke’s.
“At a workshop to discuss health care of the elderly, virtually every example of best practice in end of life care related to St Luke’s; which is remarkable.”
Over the years his attention has returned again and again to the importance of end of life care and a deepening appreciation St Luke’s values around death and dying.
A very personal experience shone the spotlight even further on the importance of everyone having the chance of a “good death”.
“When my father-in-law was coming towards the end of his life he was admitted into hospital. They said he was responding well to treatment and gave the impression he was getting better. No one mentioned the ‘d’ word.
“When I pulled the doctor aside and asked what the prognosis was, he said my father-in-law might recover from his current infection, but then there would be another and maybe another and eventually he would run out of physiological reserve and die. I remember thinking that we need to talk in a different way about this and not give false hope on the premise that it is somehow ‘kinder’. My mother-in-law needed to prepare herself mentally for the inevitable and this sort of ‘kindness’ simply delayed the inevitable reality.
“A pathway coordinator said that he would be discharged into residential care, adding, ‘I’m sorry, but he’s not close enough to death for St Luke’s’. I’m not sure what that meant, but he died a week later.
“I think part of St Luke’s responsibility is to show what good looks like and help others to attain those heights.”
An accountant by training, Nick has most recently been involved in making business cases and business plans and putting commercial projects together.
He believes his experience chairing two other local charities: the Eddystone Trust supporting people with HIV and other blood viruses and Plymouth Access to Housing working with the homeless and people at risk of becoming homeless, will stand him in good stead at St Luke’s.
His other experience includes being a non-executive director at Plymouth Science Park, a member of the Scan4Safety and Quality Improvement national advisory boards, treasurer of Elfordleigh Golf Club and board advisor to Plymouth CIC Engaged Communities.
Trustee and deputy chair Martin Walker said: “All the trustees were delighted to formally approve Nick’s appointment as our new chair. During his application and interview, his leadership skills, charisma and broad experience stood out. Nick brings a wealth of experience from senior NHS management roles, commercial projects, and several positions in the charitable sector. We all look forward to working with him in the years ahead.”
Outgoing chair Charles Hackett added: “I can’t think of a better person to succeed me as chair of the board. Nick is fully in tune with the organisation’s values and the bigger picture of what St Luke’s incredible expertise and strong reputation can offer the broader healthcare system in Plymouth and beyond, and passionate about quality of care.”
Do you work in health and social care? If so, we need your views to help shape how our services will look over the next three years.
At St Luke’s, we design our specialist care and support around the ever-changing needs of our patients and their families, and the contribution we can make as a partner in the wider health and social care system. Our community is so important to us, we trust and value your views and want to provide a service that suits you.
We’re putting together our three-year strategy. Would you help us get this right by taking part in our survey, answering key questions about what we do now and how we could best develop in the future? We will listen to all your feedback, together with that of patients and their families as well as our staff and volunteers.
Thank you so much – we really appreciate your insight and time.
Complete the survey here: https://forms.office.com/e/VYi687EHSA
Creating happy memories has always been a special part of Matt and Kelley Avery’s life together. A formidable, fun-loving team, they’ve certainly collected a bumper package of magic moments over the past 17 years, despite weathering some very tough times.
The couple have shared numerous incredible holidays in the UK and around the world, on their own, with friends, and with their children. They’ve danced the night away at family and friends’ weddings and been the life and soul of countless dinner parties and new year celebrations, as well as murder mystery and hot tub evenings they’ve hosted at home.
And who could forget the romantic hot air balloon adventure that former Miss Plymouth Kelley booked as a surprise that confirmed she and Matt were made for each other?
But they certainly didn’t expect to be adding to their positive standout memories when Matt was admitted to St Luke’s specialist unit a few weeks ago, weak and in terrible pain.
Nevertheless, there were a few big surprises in store for the carpenter, funky house DJ and Rat Pack fan and his wife – not least him feeling well enough to go home to Sherford, where he’s now spending precious time with Kelley, their daughters Madison, 15, and Lacey,11, son Harrison, six, and spaniel Chester, nearly 13.
On top of expert care, the whole family – including the dog – felt welcomed, supported and thoroughly spoilt by St Luke’s friendly and understanding teams who all went above and beyond to create a positive experience.
There was an impromptu birthday party for Matt, Halloween fun with pumpkins, quiet times with his parents in the hospice gardens, arts and crafts sessions for the children and a unique Plymouth Argyle treat that put the icing on the cake.
“Four weeks ago, I was up in bed in complete pain thinking that was it. I went into St Luke’s at Turnchapel with worries because you think ‘Am I going to be able to come out?’ Some people don’t. But there are people who do, and I am one of them,” said Matt. “I had such a good experience in there, the way they looked after me and reassured me all the time.”
Matt was first diagnosed with a rare form of cancer – GIST or gastro intestinal stromal tumours – when he was 31, back in 2009. The news came just five weeks before he and Kelley were due to get married. Matt had started chemotherapy treatment, but the wedding went ahead as planned at Plymouth’s Continental Hotel, with 140 guests – and more in the evening, when a Rat Pack singer sang some of Matt’s favourite songs. “The best wedding present was being told that he was responding to treatment,” said Kelley.
After a successful operation on his bowel and liver at Derriford Hospital, Matt has continued on slow release chemo treatment ever since, enjoying months and years of feeling fit and well, interspersed with sporadic bouts of ill health.
Cancer was part of his and Kelley’s everyday reality, but they didn’t let it stop them living life to the full or affect their dreams of adding to their family. Lacey was born in 2012, Matt trained hard and ran the Plymouth Half Marathon in 2015 in just two hours, and in 2017 the couple welcomed Harrison into the world.
Kelley, a former Miss Plymouth, who worked for an estate agency, said: “I thought the best thing to do was to keep to a routine with the children, with work and with life in general. Of course, the focus is going to be on the person who is poorly, but you have to be the glue holding things together.
“The week leading up to each check-up appointment would be filled with stress and tears, then that would be it for another three months. It was time to put worries to the back of our minds and we lived like that for years. It was hard going, but we had some great times.”
As a family they enjoyed lots of caravan holidays in Cornwall, heading for Polzeath, where Matt could indulge in his love of surfing and the children became confident “water babies”. Another favourite has been Center Parcs, where they relished adventures on two wheels.
Matt added: “We are quite positive people and that is what has got us through. We gradually got into a routine. I looked fit and healthy and normal and generally life was manageable.”
But despite additional expert input from Cambridge GIST specialist Dr Ramesh Bulusu, eventually the cancer spread to Matt’s bones, and he started radiotherapy treatment.
In January this year the doctors told Matt there was no more they could do to treat him and in October his health took a turn for the worse. He was unable to eat and was losing weight fast. He and Kelley had been referred to St Luke’s and they called clinical nurse specialist Debbie Hutchinson for advice.
“We got the doctor out and Debbie came too. For pain management’s sake they said let’s get you into Turnchapel,” recalled Matt. “I was not ready in my mind for that. I don’t know how it’s going to be down the road, but my feelings then were, ‘I’m not ready for this but I need it’.
“They made me feel so welcome. The care they give you is so different. I got to know all the nurses and staff and you are on first name terms with everybody, including the doctors. They are so friendly and so polite.
“They started off trying to control my pain and my nausea. I hadn’t really eaten for weeks. When I was on chemo it was a form of treatment that made me put weight on – and I liked a pasty too. But I’d gone down from 15 stone in January to 11 stone.
“When you are medicated up, days just go by and you don’t even know if you’ve been fed or not. Then, when you are feeling like you can get up and do stuff, they are still there and you realise what they have done for you.”
A week after he was admitted, it was Matt’s 46th birthday and the St Luke’s team pulled out all the stops to help make it a memorable day for him, Kelley, the children and their close family.
Matt said: “We’d had a meal out booked for the Saturday with family and friends, but we couldn’t do that. The staff rallied round and got pizza and balloons and we had a family gathering. It was just a lovely thing for them to do.” They also surprised him with a cake and a rousing chorus of Happy Birthday.
“It was very important for the occasion to be marked, especially for the children. That personal touch was just lovely,” added Kelley, who has nothing but praise for the support they received from the whole inpatient team and individuals like Debbie, and support worker Lisa who is part of the team on the Patches programme that helps patients’ children and grandchildren.
“St Luke’s have been amazing for me, Matt and the children. Patches has been great. They have provided arts and crafts and fun stuff the children can do.”
At Halloween, Kelley, Madison, Lacey and Harrison brought in Chester the dog, along with some pumpkins, and spent time together carving them into ghoulish faces in the unit’s family kitchen. “Matt was given a really, really small pumpkin to carve. Then we came out into the garden and it was all lit up. We were able to put the pumpkins out all in a row. To share that moment together was very, very important. It was an opportunity to make memories that we might not have had,” said Kelley.
Perhaps the most spectacular memories the family made together was when football fan Debbie told Matt she had two tickets for him for Argyle’s match against Middlesborough on 4 November.
“I’ve always been an Argyle fan. I’m from Plymouth so it’s going to be my number one team. I couldn’t thank her enough… and then it escalated,” recalled Matt.
Argyle player Finn Azaz, one of St Luke’s regular volunteers, went to meet Matt in his room at the hospice with volunteer Elliott Darcy, who coordinates Argyle visits for St Luke’s patients and their families. A 20-minute visit turned into an hour and a half.
“I could have been sitting in the pub with them having a chat. We got on really well,” said Matt. “Then Finn asked what is your son called and does he like football?”
The next thing Matt heard was that Finn had put Harrison forward as a mascot for the match. On the day, Matt was there in the crowd with Kelley’s dad when Finn brought the six-year-old onto the pitch in front of a huge, cheering Green Army. And that wasn’t all. Harrison was given a new Argyle kit and his sisters also got to watch the game and meet all the players.
“It was a brilliant day and we cannot thank Finn and Argyle and St Luke’s enough for all of it. It’s made the best memories,” said Matt, who is grateful to be back on his feet.
“You get that stigma about going into St Luke’s. Four weeks ago, I was up in bed in complete pain thinking that was it. They’ve sent me home with the right medication and they’ve explained everything. And we have great after care. I didn’t even know hospice care at home existed. Debbie might as well move in!”
Kelley added: “We’d felt like we were in such a hole in a way. Matt’s quality of life was quite small. When things came to the point when he was in so much pain, we thought St Luke’s would be end of life care. But there was light at the end of the tunnel and we actually got Matt back.”
She has this advice for anyone who find themself in a similar situation: “It’s important to make sure you have a good connection with someone like St Luke’s, or the Mustard Tree at Derriford.
“When they say give us a call if you need anything, do call them. Everybody needs support. You can never get through this on your own.”
The couple are also incredibly grateful to all their family – especially Matt’s mum and dad, his brother Scott, and Kelley’s parents – for being there to support them in so many ways.
Last, but not least, Matt has some special words for his children: “We are very, very proud of them. I’d like to tell them to keep being yourselves and working hard! They each have their own personalities and they are all very caring. We are so lucky.”
Punk drummer Dave Whatmore was thrilled to be right at the heart of the action when his friends staged a unique farewell gig in his honour.
It’s not often someone gets to attend their own send-off, but the best, and only, seat in the house was reserved for Dave at the punk all-dayer held on last Saturday (14 October) at The Junction pub in Plymouth.
Featuring some of his favourite local bands, and some from farther away, it wasn’t only an epic party that everyone who came will never forget, it also raised more than £2,000 to split between his chosen charities – St Luke’s Hospice Plymouth and Macmillan.
“There’s no point having a party while you’re lying in a coffin, you’ve got to do it before you go,” said Dave, 58, a familiar face on the Plymouth music scene, who has a terminal cancer diagnosis and is being supported at home by St Luke’s.
“We held a ‘sorry to see you go’ charity gig at the Junction on Mutley Plain, a going away party type of thing. It was a nice little tribute and nice to be there and see it, rather than them doing it while I’m dead. A lot of people don’t get that chance.
“I couldn’t have wanted anything better than that. It was great fun and very nice of them to do it. There were so many people there. I sat in my seat with a circle of protectors around me. I knew pretty much everybody there. A lot of people I hadn’t seen for 30 or 40 years. It was so nice to see everyone and for them to actually be able to come and speak to me.”
At the end of April, after an episode of acute chest pain, Dave was told that he had inoperable cancer and that he might not make it to Christmas. He took a little time to digest his prognosis before his punk rebel spirit started to kick in.
“They told me I’m probably not going to see Christmas. My reaction was to buy a ticket for next February to see a band at The Junction,” said Dave, speaking at home in St Judes, surrounded by his faithful dog Poppy, his partner Alice, her two dogs Pinky and Troy, and their little cat.
He acknowledged that it was the support of St Luke’s clinical nurse specialist Debbie Hutchinson that has encouraged and enabled him to keep living in the moment and make the most out of the time he has left, to the best of his ability.
Like many people, Dave had a limited idea of what hospice care means or what to expect from St Luke’s before having a personal connection.
“I didn’t really understand what St Luke’s did and the help and love they give until I met Debbie. I thought hospice care was going in somewhere, being in a bed, shut away and you’re going to die. It isn’t anything like that.
“I get visits at home, and I get what I need to be able to do things for myself. Debbie and St Luke’s are just a phone call away if I need anything, which I have occasionally, and it’s been sorted straight away. They sorted out my medication when I would have been two days without it. Thanks to Debbie I wasn’t. I love that lady, she’s great – like a second mum. It’s a joy that there are people like Debbie and her friends who are willing to look after people and in a worse state than me.
“OK, I’m going to die at some point, but that is going to happen to us all at some time, it’s just going to be a little sooner for me than I anticipated. I’m not going to be down and angry about it. I want to enjoy what time I’ve got left and enjoy my friends because, apparently, they enjoy me.”
Immunotherapy treatment has helped Dave to feel stronger in the short term, harnessing the energy and drive to make special memories.
“I know I’m going to deteriorate; it is going to get worse and worse, but until that point, until I can’t do anything for myself, I’ll keep doing as much as I can,” added Dave, whose favourite bands of all time are Stiff Little Fingers and The Stranglers. He’s been getting out to as many gigs as he can. Just a couple of weeks ago he was able to travel to Torquay to witness PiL, another long-time favourite, in action. He also has his eye on one last outing for his own precious drum kit.
Dave’s connection with the Plymouth music scene goes back four decades. He has played drums with several popular local bands, including Mad Dog McRea in the early 1990s, Bateman and Unusual Stars. Punk is in his blood, and he has been building up a great collection of live videos from gigs he’s attended, sharing them on his YouTube channel (UPK Dave) – including his own farewell party.
Friends initially wanted to take Dave to this year’s Rebellion punk festival in Blackpool. Realising he wasn’t well enough to go they pulled out all the stops to bring the party to him and let him know how much he means to them.
Called A Gig for Spotty – Dave’s nickname inspired by the green-spotted Mohican-haired sidekick of 1980s kids’ TV hero SuperTed – it featured six bands and was organised by his mates Tom Proctor and Kevin and Alison House, with Mickey Byrne and Sweary Mark on guest DJ duties.
“It is really, really lovely. They put it all together in a couple of months. They rang up the bands and they said yes. Cult Maniax from Torrington split up 20 years ago but got back together for this gig, with two original members. We were all together back in the 1980s,” explained Dave, who used to sport his own impressive red Mohican back in the day. “One band came all the way from Blackpool and there was another band from Bristol and the others from Plymouth.”
The full 2-11pm line-up featured Bus Station Loonies, Hellwigs, Wags to Wytches, The Hate, Bad Blood and Cult Maniax.
Co-organiser Kevin House wrote on Facebook: “No words to say how proud we are of absolutely everybody connected with this and I don’t just mean the people that organised, helped, bands, the venue, I mean all of you that came and supported… The party for Dave Whatmore that was the whole reason for this, I hope we did you proud Spotty…”
The last word goes to Dave: “We did this thing, we made some money, and I chose who I wanted it to go to. I’ll be happy if it helps at least one person.”
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.
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.”
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.”
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.”
The nurses in purple scrubsAs the pressures of winter illnesses put more strain on already overstretched hospital services, St Luke’s copywriter Jackie Butler meets the dedicated St Luke’s team providing expert end of life support for patients and staff at Derriford.
Day in and day out, NHS clinical staff at University Hospital Plymouth are working tirelessly to save lives and make sick people better. Sadly, doctors must sometimes break the news that nothing more can be done to prolong someone’s life and that a person has only weeks, or even days, left to live.
That’s when the St Luke’s at Derriford team steps in to wrap a blanket of compassion and expertise around a patient, aiming to make sure their remaining time can be lived as fully as possible, with dignity and minimal pain.
Unless you’ve encountered them first hand, most people don’t realise that St Luke’s has a permanent and regular presence at the hospital, with highly trained doctors, nurses and admin staff on duty seven days a week, working alongside NHS staff, and having a major impact on the care of around 100 patients a month.
Based on Level 8, alongside Brent Ward, the St Luke’s doctors and nurses visit adult patients anywhere in the hospital who have a progressive, life-limiting illness and a terminal diagnosis, and there are as many as four or five new referrals daily. Their priority is to offer quick and efficient advice on how best to manage someone’s symptoms and provide the most appropriate care, as well as to help determine the best place – often preferably not in hospital – for a patient to spend their final months, weeks or days.
The team are also there to offer emotional and social support to patients’ families and carers, as well as to share their knowledge and compassion with Derriford’s own nurses and doctors who can find it upsetting and challenging when, despite their best efforts, death becomes inevitable.
As gatekeepers for the hospice as a whole, the St Luke’s hospital team liaises closely with the organisation’s at home and Turnchapel services to find the right solution for each individual. If it’s possible for someone to leave hospital, the team help Derriford’s own complex discharge service arrange their transfer, often recommending them for St Luke’s end of life care in the community or, for those with the most complicated needs, seek admission to the specialist unit if it’s appropriate.
I was honoured recently to join St Luke’s at Derriford Nurse Consultant Martin Thomas and Clinical Nurse Specialist Julie Ayers for what can’t really be described as a typical shift because every single day is different, with its own unique challenges and crucial decisions to be made.
“We have no idea who is coming through the door each day. We try to see urgent cases within 24 hours and if they have very bad pain or other symptoms, we try to see them the same day,” said Julie, who is clearly passionate about her own work as well as educating others.
“We are in a unique and privileged position here advising throughout the hospital. It is all about maintaining good relationships and being part of one big team. We also do a lot of education and believe strongly in encouraging people to use the taboo ‘D’ words – death and dying. It’s about getting the right messages across.
“The earlier we get involved with patients who are palliative, the more they can plan for death and how they are going to spend their remaining time. It’s a privileged role, sorting people’s pain out and stopping them from feeling rubbish.
“We have cover here seven days a week, from 8.30am through to 4.30pm for urgent cases and we always tell hospital staff they can ring through to the specialist unit at Turnchapel for advice out of hours.”
Each day is different but there are regular routines, and the morning begins with a briefing meeting. The busy team has the equivalent of 6.5 full-time nurses, led by Martin, and two full-time and one part-time doctor, headed by Consultant Doctor Doug Hooper, plus a vital clinical administrator who keeps the whole machine rolling. There are always two or three student doctors too, gaining important experience as part of their training.
They meet on camera in a virtual online room – a practical move introduced during the peak of Covid because the team are squirrelled away in three tiny rooms that aren’t big enough for a socially distanced face to face get together.
There’s just one thing on the agenda and that’s the welfare of the day’s list of patients, more than 25 on the day I was there, including several new referrals from various parts of the hospital.
Each individual’s circumstances are discussed in detail – who they are, how unwell they are, whether their condition is stable or deteriorating, whether they have been seen by a member of the team and when, what medications are being used to manage their symptoms and whether that could be improved, what their family situation is and when or whether they might be able to be discharged.
Decisions are made collectively about which patients need to be seen urgently that day and which member of the team will visit them on the wards, always prioritising continuity of care and quickly building a relationship of trust with patients and their loved ones.
Individual cases can be enormously complex. One person had been fighting cancer for years but was now reaching the end. Chemotherapy had initially helped to control their cancer, then the disease had now spread and was no longer treatable, and a chest infection was also adding to their discomfort. They had been brought into hospital because they couldn’t cope at home and now needed to look at what was the best course of action.
It’s a thorough and painstaking meeting that goes on for more than an hour and at the end everyone has their allotted tasks, although in such an unpredictable environment they are always prepared for the unexpected.
For today Julie’s role is triaging referred patients as requests come in from around the hospital. Meanwhile, Martin takes responsibility to visit several patients on the list during the late morning and early afternoon, with important meetings and briefings to fit in too.
He has been familiar with the medical world since he was a child. Martin grew up listening to his nurse mother talk about her work and he was drawn into nursing himself in the late 1980s at a time when strong and positive male role models were being established on TV, notably Charlie Fairhead (Derek Thompson) and Ash (Patrick Robinson) in medical drama Casualty.
“I spent 15 years working on the haematology ward at Derriford, becoming a charge nurse and then a matron, but I was frustrated because I ended up sitting at a desk with little patient contact,” he said. “On a course I sat with the then clinical director at St Luke’s and she asked me if I had thought about being a palliative care nurse. I applied for a job working in the community and fortunately they took a punt on me.”
Martin cared for patients as part of the community urgent care team for 17 years. After being asked to step in to help the St Luke’s hospital team for a couple of months, he got the job to head the department in 2019.
“Our job is about deciding who needs us most and then where do we go from here. If it involves complex symptom management or psychosocial planning, then people will be referred to us to take on management of their care. If they are still under a surgeon or medic, we will work alongside to give support and good advice,” he explained.
“The average stay on our caseload is six days. Patients are either discharged into the community, or sadly die in hospital. While they are in St Luke’s sights the team will do everything they can to support them and their family members, and try to find the best course of action on discharge.
“All being part of one big St Luke’s team really works and we have a daily dialogue with the community and inpatient teams. Knowing the ins and outs of the organisation as a whole means you know who to refer to and who to speak to.”
During the first Covid lockdown, the nursing team started wearing surgical scrubs for practicality, naturally choosing purple in line with St Luke’s customary colour scheme, and that has carried on ever since, visually underlining their identity as experts in a very special field.
There’s a palpable sense of relief when Martin walks onto a ward. The Derriford nurses and doctors, anxious to do the best they can for their patient, turn to him eagerly.
Technology now allows much swifter sharing of information about a patient, so Martin can easily access medication records, bed management details, blood test and scan results, oncology and clinic reports. And as a nurse prescriber, he can prescribe appropriate drug treatments without referring to a doctor.
On the door of a side room door there’s the symbol of cupped hands holding a butterfly, a sign to everyone that the patient is nearing the end of life and care needs to be gentle and thoughtful. Inside, a man in his 70s is nearing death, surrounded by loved ones, but he is agitated and clearly uncomfortable.
Liaising with UHP nurses and his family members, Martin quickly organises a syringe driver that will administer palliative care medication just under the skin to relieve his symptoms and let him feel relaxed.
“It’s important that we get this right first time, particularly so the family can feel we are doing everything we can. It is not right to see someone so distressed and not do something about it,” he said. “It’s very much about the family at this stage and making sure they know you are listening, and you understand. We also always assume the patient can hear, even if they aren’t responding, so we will continue talking to them and reassuring them at all times.”
When a doctor or nurse thinks someone is approaching death and that comfort, rather than curative measures are appropriate, they will activate an End of Life icon on their electronic notes that will activate a referral to St Luke’s.
Our next stop is a busy cardiac ward, where the sister and junior doctor are seeking Martin’s opinion about a woman with heart failure who had been deteriorating rapidly over the previous 24 hours. She looks like she’s sleeping peacefully and, Martin confirms, is in the active phase of dying and does not appear to be suffering.
After seeing each patient, Martin makes notes in their paper hospital records and he’ll also add his observations, prescriptions and recommendations to the electronic system so that everyone involved in a patient’s care can be kept up to date at all times.
After a very brief lunch break, he’s hurrying to another ward to visit a frail and terminally ill woman, also suffering with dementia, who is about the be released to a specialist nursing home in North Cornwall. He’s making sure all the correct medications are in place and, because she lives off the St Luke’s at home patch, will make a referral to the Cornwall palliative care team and the woman’s GP.
Throughout the day, Martin’s reassuring presence and commitment to relieve suffering are as awe-inspiring as his philosophical and pragmatic attitude to death and dying is refreshing.
“Death is like going to sleep and we know that because people who are dying tend to have periods of slipping into unconsciousness, when they don’t remember blocks of time. Good days and bad days are part of dying. It is not something to be feared. It is disappointing, knowing the things you are going to miss, but the moment of death is not tortured; it is a release,” he said.
Nevertheless, the heavy caseload and the sadness of patients’ deaths does take its toll. Martin and Julie keep a close watch on the wellbeing of all St Luke’s team members, aiming to vary duties so the pressures don’t become individually overwhelming.
They’ve recently introduced a weekly ritual of personal reflection. Every Friday team members are invited to take a few moments out of their busy day to gather in the hospital chapel and light a candle for patients who have died. It’s a time when they acknowledge the lives lost and the efforts they have made to support those people in their final days.
Far from being a religious gesture, it’s about offering a brief, but important, opportunity for meditation in a quiet and spiritual space.
Julie said: “We sourced some little purple tealights that are heart-shaped. We light them and we write something in remembrance. We each have our own thoughts. When you are so busy you don’t usually have that moment to come away from the ward and find some tranquillity.”
