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“When I start my shift after two days off and realise all my patients’ names have already gone from our whiteboard, that’s when it really hits home how much more quickly people are dying now because of the pandemic. It’s utterly heart-breaking.”

With the country entering its second national lockdown this week, a healthcare professional from St Luke’s Hospice Plymouth, who knows first hand the impact the pandemic is having on not just lives but deaths too, has shared how it feels to be part of the local charity’s dedicated workforce carrying out their vital service for terminally ill patients and their families while cases of the virus continue to rise.

As a Healthcare Assistant with the Urgent Care Service run by St Luke’s in partnership with Marie Curie, Selina Rogers is used to dealing with death. She and her colleagues choose to work in the challenging environment of hospice care because they understand the difference their specialist skills, and their kindness and sensitivity, make to terminally ill people at the end of their lives. What has changed over recent months, though – and increased the emotional toll on this resilient team – is the speed at which their patients are dying.

Between them, Selina and the rest of the team, which as well as her fellow healthcare assistants includes doctors, nurses and bereavement support workers, cover Plymouth and surrounding areas and are out on the road seven days a week looking after patients at home during a period of change in their condition or a crisis. It is what they do to make the community a kinder place for people who are dying and for the loved ones around them. It also reduces unnecessary admissions to hospital, relieving pressure on the NHS.

This provision from St Luke’s, which is so essential to making their patients more comfortable – managing their symptoms and putting them and their loved ones as at ease as possible – is given by the charity at no cost to those who receive its personalised care and support. The Urgent Care team is continuing to meet the increasing demand for specialist end of life care at home, despite St Luke’s experiencing loss of income with its charity shops being forced into closure for much of this year and its popular mass participation events, such as Midnight Walk and Men’s Day Out, postponed until safer times, in accordance with government advice.

Selina said: “We see a lot of death in what we do, but during this last six to seven months there’s been more than ever. I don’t mean people who’ve died from COVID-19 but those with conditions such as cancer, motor neurone disease and heart failure.

“We can lose four patients just in one day – that’s around what we’d usually expect in a week. We can finish a shift and have our two days off, come back to work and see patients’ names that are all new because those we’d looked after on our previous shift have already died. I find that incredibly tough.

Explaining more, Selina said:  “I think it’s because we’re getting our referrals in later and people are dying a lot sooner. It’s almost like crisis intervention – in many cases, we’re going in the last 24 – 48 hours of their life and making sure they’re comfortable.

“We think it’s in part because many people haven’t been going for routine appointments at hospitals either because they’re scared it’s not safe during the pandemic or because they’ve not wanted the NHS to feel any more stretched than it already is.

“This time next year we’re likely to see even more deaths because people aren’t having the treatment they need. That’s why I want to echo what the NHS is telling everyone, reminding people just how important it is for them to keep their appointments, and if they feel unwell or notice anything out of the ordinary in terms of their health, to talk to their GP.”

As she and her colleagues brace themselves for working throughout another lockdown to reach the many people who need their compassionate care at home in their last days of life, Selina said: “It can feel really challenging looking after people who are so poorly, but we never shy away from it and the pandemic has not – and will not – change that.

“It is very special to be almost be part of a patient’s family during such a vulnerable time. I feel privileged that in my role I can give them not only practical support but be a reassuring presence that reminds they don’t have to go through it alone.

“Another important part of what we do is preparing them for what’s going to happen, getting the balance right between being gentle but not sugar-coating the truth because it’s crucial to be honest. These are not easy conversations to have but in my experience families appreciate that openness and feel relief that they can share whatever they’re feeling with us.

“What I do miss since the pandemic started though, is being able to give them a hug when they need it. We can’t because we all have to respect the safety measures that help keep everyone safe from the virus.

“Just this week, I was with a lady who sadly died while our team was there. Her husband was heartbroken yet I couldn’t put my arm around him the way I usually would – it’s instinctive when someone desperately needs that comfort and it feels really alien and frustrating not to. I just rested my hand on his shoulder and hoped he could see in my eyes how much I care because of course the masks we wear as part of our PPE make it harder for people to read our expressions.”

“What helps me at those times is feeling I’ve done all I can to make such a difficult time that little bit easier for families and knowing St Luke’s bereavement team will be there to support them as they grieve, the comfort blanket they need as they gradually come to terms with their loss.

“Going into this second lockdown is tough on everyone and particularly challenging for people affected by terminal illness because they might be feeling more isolated or anxious. I want to reassure our patients, their carers and their families that St Luke’s will continue to be there for them.

“I also want to thank everyone who supports our charity because it makes such a difference. I’ve been so touched by the way the community has kept us close to their hearts despite the pressures they themselves are facing.

“There doesn’t seem to be any slowing in the higher number of deaths at home and our service will be needed more than ever in the months ahead, so everyone’s kind words and thoughtful gestures really help all of us at St Luke’s dig that little bit deeper to keep going for our patients, whatever this pandemic throws at us.”

The Urgent Care Service is a partnership between charities St Luke’s Hospice Plymouth and Marie Curie.

Working closely with district nurses, GPs and health and social care agencies, the team ensures high-quality, co-ordinated and compassionate care and support for terminally ill patients who need a high level of specialised care at end of life and want to be looked after at home.

The service reaches across Plymouth and into the surrounding areas of South West Devon, including Salcombe, Kingsbridge, Ivybridge, Tavistock and the Moors.

St Luke’s Hospice Plymouth provides specialist palliative care to people with life threatening illnesses and support to their families and carers, in partnership with others. The care is not just medical and nursing but incorporates emotional, social and spiritual support as well.

We are always interested to hear from people with the knowledge, skills and motivation to help ensure that as St Luke’s evolves, we continue to make wise decisions that mean we can meet the challenges ahead, including reaching underrepresented groups who sometimes struggle to be heard.

Trustee, Charles Hackett, said: “Being a trustee at St Luke’s supports my personal development but more importantly allows me to use my skills to help, in some way, the community in which I live.”

Being a trustee with St Luke’s can be rewarding for many reasons, including a sense of making a difference with a well-respected charity that touches the lives of local families to gaining new experiences and forging new relationships. (For an insight into our recent work, take a look at our latest impact report.)

Fiona Field, who sits on the Organisational Risk and Audit Committee and chairs the Health & Safety Committee, said: “I give about one day per month on average, this is divided between being a member of the board, chairing the health and safety committee, visiting teams across St Luke’s and taking part in some of the fundraising activities. I have regularly attended the Open Gardens in the summertime, sold programmes on Plymouth Hoe at the Firework Championships and walked the Elmer Trail.

“I find the work interesting and rewarding and I am always proud to talk to others about the brilliant work that everyone at St Luke’s does for such a worthy cause. I am keen that the services St Luke’s offers continue to be of the highest quality possible for our patients and their families locally.”

For more information on getting involved, please contact us by e-mailing info@stlukes-hospice.org.uk

When friends would visit his wife Jeanette, “I’m just going upstairs” was the phrase Jim Tozer had a habit of using after he’d said hello and before he’d slip away to write, record or simply listen to his beloved music. It was typically low-key of the talented yet modest man his family remember with such deep affection.

It was following the return of oesophageal cancer and his choice not to undergo further treatment that Jim came under the care of St Luke’s, with nurse Sonja Pritchard visiting him at home in the last weeks of his life. Home was where he wanted to receive treatment so he could be with Jeanette and daughter Suzy as well as enjoying regular visits from his son and grandchildren.

Sadly, Jim died last October, aged 68, but as Jeanette and Suzy explained on a recent visit to Turnchapel, where they were joined by Sonja and Alison Beavers, the Bereavement Support Volunteer who has been alongside them, it comforts them to know Jim passed away peacefully at home, surrounded by love.

Jeanette said: “Being a nurse meant I was able to care for Jim at home, but when his condition deteriorated and he required specialist help, Sonja was amazing. She was a reassuring presence for us all.”

Listening to Jeanette speak about her husband of 31 years, and hearing from Suzy too, it is clear to see their love for Jim and the depth of loss they feel as they navigate life without him.

While she knew losing Jim would be challenging, Jeanette anticipated that her nursing career would help her cope and that she would be able to return to work shortly after his funeral, which – understandably – has not been the case. She said: “Jim was terminally ill so I knew what was coming, but losing him has been devastating. I miss him so very much.”

Fortunately, thanks to our community’s support for our charity, we are able to offer more than hands-on medical care. We provide emotional, practical and spiritual help that can make an important difference to bereaved people.

So, ever since Jeanette reached out, Alison has been there as a friendly listening ear, giving her the space to share her feelings at the pace that’s right for her.

The two have developed an easy rapport with Alison visiting Jeanette regularly and listening when Suzy needs to talk, too.

Alison said: “Our service is for anyone whose loved one was cared for by St Luke’s whether the death is recent or happened several years ago. People aren’t themselves when they’re bereaved and emotions can sometimes be confusing and distressing. Getting these feelings out into the open is important in helping them come to terms with their loss and move forward. They have the reassurance of knowing everything they tell us will remain confidential, even if we are there to support other members of the family, too.

“It’s been a privilege getting to know Jeanette and Suzy and hearing their memories of Jim. I feel almost as if I knew him.”

These memories include DIY enthusiast Jim using his skills to give Suzy’s bedroom an impressive makeover to welcome the comedian home after she’d been working away, and giving granddaughter Amy a keyboard to nurture her musical talents. Perhaps most moving of all is the memory of Jim’s sheer determination, despite his diminishing health, to make a ‘secret mission’ into town to buy his wife a diamond ring as a sign of his love and gratitude for her devotion to him.

Jeanette said: “Talking with Alison never feels hurried and it helps me remember all the happy times. We’ve listened to Jim’s music, too, which was such a huge part of his life. There are lots of tears but laughter, too, especially remembering his humour. Even when he was really ill, Jim was still joking with the nurses.”

Suzy, too, finds comfort in her precious memories of the man came who into the lives of her and her brother as ‘Uncle Jim’ but very quickly became a loving father. She said: “It was dad who bought me my first joke book, so it’s his fault my career is in comedy. And when I went abroad to work he put his own lyrics to an Elton John track for me – it was so personal and funny that I still sing it in my head.

“I felt so sad when dad was ill, but things would have been so much harder then – and now – without St Luke’s. You can’t put a price on what they provide but it’s why we’re fundraising to give something back. We’ve been so touched at people’s generosity and dad would have been, too.”

Suzy’s Just Giving page has raised £2,300 to date, for which we are very grateful. Thank you to the whole family and everyone else who has shown their support.

With people living longer and developing more complex conditions, having GPs who understand end of life care, and do not shy away from difficult but necessary conversations with patients about death and dying, is more important than ever.

Given this, you may be surprised to hear that it is not mandatory for GPs to gain experience within hospice care as part of their training. Rather, it is an option they can select as one of the three rotations they are required to complete on their way to becoming qualified.

Recently, we spoke to Dr Malik Dinata, a trainee GP who has chosen to spend four months on rotation with St Luke’s, to see our service through his eyes and find out how his experience with us will help to prepare him for his career in general practice.

Based within our multidisciplinary clinical team at Turnchapel, Dr Malik has been particularly struck that the time he spends with patients on the ward is unhurried. This means he is able to focus on more than their physical symptoms, getting to know them and their history and finding out about their hopes, expectations and concerns – something that would not be possible within the very pressured environment of acute care.

Dr Malik said: “It is very precious to be able to work with St Luke’s. I get to sit with my patient and practice medicine as it is supposed to be.”

Dealing with death, dying and someone’s last days of life can be one of the most stressful parts of a doctor’s role, and Dr Malik credits the support he receives from his supervisor,

St Luke’s Lead Consultant Dr Jeff Stephenson, and other colleagues, for ensuring he feels ‘safe and comforted’ in a setting many would find very challenging.

He said: “We always touch base before I see a patient so that we can discuss the approach that’s most appropriate for them, and then afterwards colleagues check in with me to ask how it went and how the patient responded.”

On average, a GP surgery has 2,000 patients, with around 20 of them – one per cent – living with terminal illness. To help them be as comfortable and as at ease as possible as they approach the end of their lives, they need the specialist care and support of hospices like St Luke’s, where the help they receive is holistic and tailored specifically to them.

Trainee GPs like Dr Malik, who spend time gaining valuable experience in a hospice setting, are not only more equipped to diagnose accurately and prescribe accordingly, they are more confident having the sensitive yet necessary open conversations about death and dying that help their patient fulfil their wishes about their last months, weeks and days of life.

Dr Jeff said: “Being on rotation with us is a wonderful opportunity for future GPs to gain intensive exposure to looking after people who are terminally ill.

“Importantly, while they’re with us, trainees also learn when to admit a patient to hospital and when it’s more appropriate for them to receive care at home, which is key to avoiding unnecessary admissions.”

Listening to Dr Malik, it is clear that our organisation has made a positive and lasting impression on him that he will carry forward into practice.

He said: “St Luke’s is such a unique environment where people, including the patients themselves, learn to become more accepting of their mortality.

“It’s so important for GPs to know how things should be done. At St Luke’s I’ve seen the ‘gold standard’ and it will benefit my future practice – it will be my point of reference and remind me what I need to do for my patients.

“You don’t gain this type of valuable experience from reading about it in textbooks or hearing about it in lectures. You get it from practice at St Luke’s.”

When news came that a patient at St Luke’s Hospice Plymouth who desperately wanted to spend precious time with her horse would see her wish fulfilled, the charity’s Communications and Marketing team sprang into action to ensure the horse’s visit to the specialist unit’s grounds to be with his loving owner was captured on video, just as she and her husband wanted. You can read the story here.

Viewed by over 500,000 people online, this moving film not only meant a great deal to the patient and her family, it perfectly illustrates the way the skills of the team dovetail to create impact for St Luke’s, telling our stories both internally to colleagues and externally, including to new audiences as well as loyal supporters.

As with all departments across our charity, it is always ‘patients first’ for this very busy team, led by Head of Communications and Marketing, Robert Maltby, who has been with the charity for over six years. No matter what other work is scheduled, they recognise that prioritising the needs of those in our care is an essential part of making sure they feel special despite their very difficult circumstances.

Robert said: “The film is a great example of the additional people skills involved in our work. It would be easy to think as an outsider a 30-second video is fairly quick and simple to produce. In reality, behind the scenes it took our team of four several days, with many interactions with the patient and their family, to build trust and deliver something that was both respectful and met everybody’s expectations. You are dealing with a situation that can change by the hour and re-purposing content for a multitude of platforms.”

“As a manager, I also have to ensure the health and well-being of my team are a priority, encouraging them to open up about the emotional challenges they may face when working on such an emotive story. It can be very emotionally challenging, but it is a real privilege to be involved with a family at such a personal and private time.”

 

Robert added, “While for many healthcare professionals there are support mechanisms in place, for example ‘clinical supervision’, St Luke’s should be praised for going over and above to support non-clinical staff. Often for every patient video or photo the wider pubic may come across, there are many more videos the team are involved in that stay private for the family. If support wasn’t in place it would ultimately take its toll.”

While the team of four spends much of their time collaborating to make sure the public and other stakeholders, from healthcare professionals to local authorities, are better informed about our vital service, through brochures, feature articles, media relations and social media, they also work hard to meet our charity’s need to engage donors and people willing to fundraise for us to ensure our work continues for generations to come.

From creating and delivering innovative, high-impact print and digital campaigns that help rally thousands to take part in our flagship events such as Tour de Moor and Men’s Day Out, to crafting creative content for Hospice Care Week and the Impact Report, Robert, Jesse (Graphic Designer), Rhianne (Digital Communications Officer)  and Paola (Communications Officer) take pride in producing work that not only boosts awareness but reflects well on the highly professional and compassionate organisation we are.

This commitment to high standards extends to St Luke’s retail network, too. Robert said: “With our chain of over 30 charity shops, as with all our print and digital materials, making sure St Luke’s branding is ‘on point’ is crucial. Our team’s work to build, enhance and protect it is an important part of maintaining the high profile and high esteem we hold in the community and attention to detail really matters. So, whether it’s shop signage, staff uniforms, web pages or leaflets, we are here to make sure the look is right.”

Read the brand and communications guidelines that are the bible behind a great Communications and Marketing team.

When you factor in that the team is also responsible for all St Luke’s social media across Facebook, Instagram, Twitter and LinkedIn, key internal communications through the intranet and St Luke’s TV screens, and working with the media to deal with their queries and promote important news about our charity, you realise that they are masters of multi-tasking and time management!

The challenges?  “I think our communications challenges are the same as every other hospice in the UK, and that is around the public’s understanding of how hospice care has changed over the years,” said Robert. “People will associate hospice care with a building. That was St Luke’s over 35 years ago. Over 50% of our care is now delivered at home with only 5% in our traditional hospice building.  Taboos around talking about death and dying, and understanding we are about more than just cancer and go beyond serving the city of Plymouth also are communications barriers. However, we are making great progress to change perceptions with stakeholders by ensuring simple key communications messages flow through all our channels at every opportunity.”

What makes a good communications and marketing strategy? “I firmly believe the key to a successful hospice communications and marketing strategy is all about storytelling and a focus on the people. It is not necessarily about the ‘ask’ to get loyal stakeholder buy-in,” said Robert. “As many of my fellow hospice communications professionals will concur, there is a lot more behind the glossy fundraising posters and social media posts. From protecting the reputation of the charity to horizon scanning for new trends and technology, many of these daily tasks happen unnoticed. The future of digital communications is exciting. As regional media declines outside our major cities, becoming self sufficient with your digital content has the potential to reach far greater audiences than relying on a traditional media release”.

Robert concluded, “It’s definitely a challenge though because not only are there so many teams needing our support, we also get affected emotionally when we are meeting patients and their loved ones and telling their personal stories to the world – that’s part of what makes us human.”

Read the stories behind St Luke’s Hospice Plymouth.