Tag Archive for: bereavement

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The Running Diaries – Miles for Marian

“Marian was just a brilliant human being.”

These are the words that David Lane uses to describe his late wife, Marian, a dedicated and inspirational mum, daughter, sister, friend and teacher who sadly died in November.

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The Running Diaries – Lauren Prentice

“We are an ordinary family, and it’s not until you find yourselves in uncharted waters that you realise what local charitable organisations are available to provide the help and support when you need it the most.”

Lauren Prentice from Plympton will be running for St Luke’s at Plymouth Britain’s Ocean City Running Festival on Sunday 28 April in memory of her mum, Carol, who died in 2016 aged 65.

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Introducing Nick Thomas, the new chair of St Luke’s board of trustees

 

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.”

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

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

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

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

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

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

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

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

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

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

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

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

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

Click here for more information on Open Gardens

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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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Dying Matters Awareness Week 8 – 14 May 2023

Personal grief when you work in health and care

How we can become more compassionate around terminal illness, dying and grief in the workplace is the focus for this year’s national Dying Matters Awareness Week (8-14 May).

The devastating and often prolonged effect of losing a loved one will have been experienced by more than half of all employees during the past five years but offering the right support – in the place where many of us spend so much of our lives – is something many managers feel unconfident about, according to Hospice UK.

People often assume that those working in health and care are better equipped to cope with loss because they encounter it on a regular basis. In reality, whether you’re in a caring or support role at a hospice like St Luke’s, in a hospital or nursing home, or working as a funeral director, celebrant or spiritual leader, it doesn’t make it any easier to cope when terminal illness or bereavement comes calling in your personal life.

In fact, these extraordinary environments can present many situations that resonate deeply and make it harder for people to carry out aspects of their work, particularly in the early days of the grieving process.

Many of us will be very familiar with practical measures and advice for self-care that can be useful following bereavement, even regularly advising and supporting the loved ones and carers of people who die in our community. But, when we’re enveloped in the fog of our own heartache, it’s not so easy to listen to ourselves and recognise our own needs.

It’s comforting to know that there is always someone you can reach out to you if you are facing personal loss. In these specialist sectors of our communities we are often fortunate to be surrounded by professional, empathetic people who know exactly what to say to grieving friends and colleagues. They won’t shy away from asking how you are, listening to your worries or having difficult or painful conversations.

Sharing your feelings with colleagues is a good starting point but, depending on your organisation, your first port of call for formal support and understanding will usually be your line manager.

When you’ve lost a loved one, the last thing you need is to be under pressure to carry on working as normal. Compassionate workplaces and managers will give you permission to take time out to reflect, talk, and tap into things that can help you slowly accept your situation and begin to heal.

No two people’s grieving is the same. Each of us deals with our loss in an individual way and a good employer will be as supportive and adaptable as possible, taking into account the special circumstances we are faced with in our jobs and the need to keep services running.

Crossovers with cases you deal with professionally may inflame your personal distress. Maybe you have lost an elderly parent with the same degenerative disease as one of your patients or there’s a young person under your care who is the same age as a personal friend who has died. These are the kind of trigger points that can be avoided by accepting that someone else may need to step in to take over particular tasks for a while.

Many health and care organisations will have robust in-house policies for good practice when managing bereavement, including arranging compassionate leave and smoothing the way for your return to work when you’re ready.

Line managers can be prepared to handle personal bereavement within their teams by becoming familiar with their organisation’s bereavement and compassionate leave policies.

If you are a health care professional, you may already have established relationships with your local hospice and, like St Luke’s, they will probably be more than happy to offer you or your teams advice on how to cope with personal grief when death and bereavement are part of your job.

  • Common feelings after bereavement are anger, shock, numbness, sadness, fear, guilt and anxiety. You may also experience physical symptoms like difficulty sleeping and eating.
  • It’s OK to take time to process what has happened and look after yourself. Rest, try to sleep and eat well, get outside in the natural world and reach out for support from family, friends and colleagues.
  • It may be very difficult dealing with other people’s grief and distress while you are grieving yourself and a period of compassionate leave could be beneficial.
  • Try to retreat to a quiet place for reflection to punctuate your working day – perhaps a hospital chapel, a library or outdoors in nature.
  • Don’t be afraid to talk about the person you’ve lost and find comfort in rituals, a funeral and personal remembrances.
  • If you are worried how you are feeling, speak to your GP and consider external counselling. Services, like those provided 24 hours a day by Simplyhealth, can be invaluable – grief can often be at its darkest and most painful in the early hours when no one else is around. You may not think you need this straight away but grief can sometimes feel more difficult after the initial period of shock and realisation.

For more information on death, dying and grief in the workplace visit Hospice UK’s Dying Matters Awareness Week

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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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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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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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A walk to remember

The 7.5 miles walked by over 2,000 men earlier this month was an opportunity for men of all ages to join together in memory of loved ones lost, walking, talking and sharing.

The day was particularly poignant for Martin Jones from Plymstock, who was walking for his wife Jenny, who sadly died just five days before.

A wonderful woman, partner, soulmate and friend, Jenny, 76, was a nurse who worked at St Luke’s from its very early days at Syrena House. The couple actually met at St Luke’s 35 years ago when Martin was a volunteer and Jen was working at our specialist unit at Turnchapel. Since then, the pair have volunteered together at our Plymstock Broadway charity shop, with their daughter Jackie following in her mother’s footsteps and also joining the St Luke’s team.

Before her death, Jenny was cared for at home by St Luke’s Urgent Care Service team, giving her comfort and dignity in her final days. While it was a big step accepting the help, Martin describes it as one of the best decisions they ever made bringing back some dignity for her, which for her was massively important.

Martin, a retained firefighter with Plymstock Fire Station, has been a regular at our Men’s Day Out over the years and despite losing Jenny just days before, he knew that it was important to honour her memory, while using it as an opportunity to speak freely with others who really understand the pain of loss.

“Jen passed early Monday morning and this walk was the following Saturday and I’ve got to admit I woke up in the morning, looked outside and thought no I’m not going, I can’t do this,” Martin explains.

“But then I had a bit of reflection back on it. I thought no Jen and I had talked about it, I do it every year. Just days before she said, ‘No, you go on it my love, you do the walk, you do it every year. I’ll still be here when you get back.’

“If you can talk about it, it can ease the pain. It won’t get rid of the pain but certainly hearing other stories from other gentlemen here, the pain will go. It won’t go completely but it will ease away.”

Jenny’s funeral will take place on her birthday, Thursday 30 March, at Yealmpton Woodland Burial. Friends of the family are more than welcome. For further information please contact Walter C Parson Funeral Directors in Plymstock.

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