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When your vital work caring for terminally ill people already takes its toll on you emotionally, how do you cope when your job is made so much more challenging by the pandemic and its impact on not only the families St Luke’s serves, but the welfare of you and your own loved ones, too?
Selina Rogers and Becci Stafford are Healthcare Assistants (HCAs) with our End of Life Urgent Care Service, which runs from 8am to 10pm seven days a week. In partnership with Marie Curie, it provides co-ordinated, bespoke end of life care and support to patients who need this at home during a time of crisis or change in their condition. The team’s remit extends across Plymouth and out as far as Salcombe, Tavistock and the moors, too, meaning frequent travel to isolated areas where accessing all kinds of services can be more difficult.
As HCAs, Selina and Becci are central to the high-calibre care the team provides, ensuring our patients are as comfortable as possible – and their loved ones as at ease as possible – in the midst of very challenging circumstances. The ‘storm’ of the pandemic has meant that their sensitivity and compassion have been even more critical than ever, with the past few months seeing them pull out all the stops to remain the reassuring presence families desperately need, all while managing their own anxieties and concerns around COVID-19.
Selina said: “Helping to look after people who are dying is not an easy job, but we do it because we understand what a difference it makes to patients when their dignity is respected and they feel understood. We know how hard it is for their family members, too, who are often shouldering a lot of the caring responsibilities for the person who is terminally ill.
“That’s why we’ve been determined to maintain the outstanding service so many rely on, despite the many challenges of carrying out our work during the pandemic. As with NHS frontline staff, we’ve had to use all the necessary PPE to help keep our patients, colleagues and ourselves safe, and though we understand just how essential it is, it has been very tough knowing patients can’t see our smiles, or feel the warmth of our hugs or the reassurance of our hand on their shoulder.
“It goes against our natures not to be tactile, so we’ve adapted by telling them when we’re smiling, and even saying to them, “It’s right now that I’d have given you a hug”, just to make sure they know how much we care.”
Even more difficult has been the shock of seeing their patients die much more quickly than in pre-pandemic times. Whereas normally patients live for up to around 40 days from the team’s initial visit, giving time for a comforting familiarity to build between them, many have sadly passed away within just one or two days.
Becci said: “It has felt really hard comprehend at times, especially seeing them looking reasonably healthy one day and finding out that sadly, they have died the next.
“We understand the reasons for this – many people have been getting referred to us much later than they normally would because of the difficulties they’ve had accessing their GP during lockdown or deteriorating more rapidly due to the pandemic delaying their hospital treatment – but understanding it doesn’t take away the shock and sadness we feel.
“As a team we’ve all had to pull together more than ever to help each other through because every one of us has found it very hard-going.”
Of course, as well as their care and concern for their patients and the families around them, our clinical teams have also faced making tough personal sacrifices to reduce their own loved ones’ risk of contracting the virus.
Becci, who has young children, made the heart-wrenching decision to live separately from them for seven weeks, taking them to live with their father to help protect them while she cared for two patients diagnosed with COVID-19.
“I felt huge guilt in choosing to stay apart from my children, and although I knew it was the right thing to do, I struggled. It’s at times like that I appreciate the team around me even more. At various times, we’ve all been close to breaking point due to the fear of the virus, anxiety and fatigue, but we’ve got through by being there for one another, laughing and crying together. As a unit, we’re stronger than ever.”
Selina concurs: “It’s been an emotional rollercoaster, but we have so much empathy for each other and we’re like a family now. We’ve had superb leadership from Sharon Mayer throughout and all our nurses have been amazing, too. It gives you great faith in your team, knowing the resilience that’s been forged through what we’ve all been through.”
Listening to Becci and Selina, it’s clear from the emotion in their voices that they’ve been so tested in recent months yet remain completely dedicated to those in their care.
Becci said: “When a family thanks you for being alongside them from the very first visit to the last, saying how that continuity was made such a big difference to them, it’s incredibly fulfilling. It feels really special.”
On Wednesday, Becci and Selena – accompanied by Sharon and Claire – will be putting their best foot forward, walking from Brooklands to Turnchapel, via several St Luke’s charity shops, to raise money for our charity. They’re doing it as part of Make your own Midnight Walk, the fun, flexible ‘replacement’ for Midnight Walk, which has had to be cancelled this year due to COVID-19.
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In May, at the height of the pandemic, Dr Doug Hooper, Consultant in Palliative Medicine in the St Luke’s team at Derriford, shared how it felt to be ‘in the eye of the storm’ at the hospital, with this specialist team extending their work to support the hospital in caring for COVID-19 patients. Nearly two months on, with such admissions steadily decreasing, two of his colleagues – nurse Linzie Collins and Dr Roger Smith – explain how the experience has been for them, and how the team is adapting as it moves into this new phase.
Linzie, who joined the team in February 2019 after nursing patients at Turnchapel, said: “I think what’s been most remarkable is the way everyone – both in our team and across the wider hospital – has pulled together, supporting each other and quickly adapting to the huge amount of change that’s had to happen quickly due to the gravity of the pandemic.
“It’s been tough at times with new changes daily, sometimes even hourly, but what’s always been at the forefront of our minds is making sure we’ve all been as well equipped as possible to give our very best care to patients who are in their last weeks, days and hours of life.
“Not only did the hospital undergo a complete transformation, with many wards moved or designated as COVID-specific – and Oncology being temporarily relocated to the nearby Nuffield hospital to free up capacity – there was also the redeployment of many staff, including nurses from other specialities who were assigned to our team to help us cope with the anticipated surge in patients needing end of life care. Now that we’re seeing less people with the virus, they’ve been able to return to their usual roles.
“My work has included covering the COVID wards as well as looking after non-COVID patients, which has given me some low-level anxiety because I’m always aware of the risks involved, but it’s been so helpful that this responsibility is shared with my colleagues.
“What’s struck me is how positive and supportive everyone has been, despite the undeniable fatigue that set in coping with the crisis. We’ve all pulled together, and I especially want to thank St Luke’s Clinical Admin, who’ve continued to be a lifeline for us, handling calls and making sure things run smoothly, despite having to do all their work off-site at home.”
Linzie’s colleague Dr Roger Smith is working with St Luke’s as part of his training in palliative care.
He said: “Fortunately, Plymouth has not seen the very high number of COVID-19 cases some other cities have had, but we’ve seen a steady stream of people admitted to the hospital because of the virus, and this has been over a prolonged period. We’ve done really well as a team to manage it, thanks to excellent teamwork and the strong leadership we have, but I won’t deny it’s been challenging at times.
“Not only have we been working with the uncertainty the crisis has brought, it was difficult using the necessary PPE with FFP (filtering face-piece), which looks a bit like a gas mask and can feel hot and uncomfortable.
“Of course, there is the emotional side, too. We’ve been supporting relatives whose loved one is dying without them by their side. However, we’ve been grateful for technology such as phones and iPad screens that’s meant that at least some could maintain some sense of connection. Nonetheless, it’s been heart-breaking to see.
Looking ahead, Roger is uncertain as to what future weeks might bring, given the number of tourists and second-home owners expected in the region soon with lockdown restrictions easing.
He said: “While it is good to see a steady decline in cases, I think our popularity as a holiday destination could make us more vulnerable than some other areas, so we need to remain vigilant. We also need to be well prepared in case of a second wave of cases in the winter months, when traditionally NHS resources are already more stretched.”
Both Roger and Linzie are also concerned that currently at Nuffield they are already seeing an increased number of cancer patients who need palliative care.
Linzie said: “It seems some people are presenting later than they normally would, perhaps because they haven’t been able to access the treatment they need due to the pandemic or because of wanting to avoid what they regard as them placing ‘additional pressure’ on the NHS. We want to reiterate the NHS’s message that it’s vitally important you don’t put off seeking medical help if you’re concerned about your health, and that you don’t miss your appointments.
“The past few months have been emotionally and physically tough, but we will manage whatever lies ahead by making sure we look after ourselves and each other, including taking some much-needed annual leave to bolster our resilience.
“We’ll continue to be here for those who need us, and do whatever we can to make such a difficult time that little bit easier for them and their loved ones.”
There is no excerpt because this is a protected post.
There is no excerpt because this is a protected post.
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.”