Nurses' Day 2022: Meet Demelza's Palliative Care Specialist

"My name’s Jenna, and I’ve been a nurse in Demelza’s community nursing team for 15 years. Although I tend to gloss over this fact when I tell people about my job – because it is very sad, and not representative of everything I do here – I am an expert in palliative and end-of-life care."

"I started my nurse training after having a discussion with one of the nurses at the Royal Alexander Children's Hospital; at the time my foster sister had been in and out of the hospital due to gut failure, and talking to a practising nurse gave me the nudge I needed to get started. Shortly after I began my training, my foster sister was referred to the Demelza community team for possible end-of-life care, so we had a chance to meet some of the team and attended an event they were putting on. I remember thinking how supportive everybody was, it was truly amazing.

"When I completed my nurse training I worked at Evelina London Children’s Hospital, which was fantastic to consolidate my training, but I found when I was working on the wards I was frustrated at the limited time I had to spend with patients; obviously, that can’t be helped as hospital wards are always busy and everyone needs the same level of attention and care, but I wanted the opportunity to provide the same kind of support Demelza had offered my own family.  When I left the Evelina, I spent a few years working at another hospice, then I saw a job advertised for the Demelza community nursing team and I had to apply. I was lucky enough to be offered a full-time post and I’ve been working here ever since.

"Obviously, my work at Demelza involves all kinds and levels of care. Not every child who comes to us needs end-of-life care, and there might be months between those cases – but it is a large part of my role nonetheless. Some families who lose a child are families we have supported for several years and we know them really well, while other times we have never met a family until they arrive home with their child who they anticipate will die. You have to have some very difficult conversations in the lead-up to a child’s death; whether the family want to come into Demelza and use one of our special bereavement suites or if they’d like to remain at home, what sort of provisions they would like you to make, those kinds of things. They might not be ready to have these discussions and it can be like walking a tightrope, as understandably emotions are running high. The important thing to remember is that every situation is unique, and most times families have never been in the position of having to face the end of their child's life; it’s an unimaginably difficult time for them.

"When you know a child is nearing the end of their life, as the on-call nurse, you tend to drop everything and get across to the family as soon as possible. You’re often required to be in the centre of the situation – adjusting medications, liaising with the tertiary palliative care team, asking questions about symptoms, and maybe most importantly making tea and supporting family members. I am a skilled nurse, but often being there as a shoulder to cry on – as a calm and steady presence in the room – is what a family actually need you for in these moments. It’s about finding the right balance that works for them, whether they want you in the middle of things or blending into the background so they can spend their child’s last moments together. It comes very naturally to me now, after all these years, and you can see the impact it makes on families both in the moment and beyond.

"A family we recently supported to have their child at home expressed that although it was undoubtedly the worst time in their lives, by having their child at home for a few more days after they died the family were able to have the time and space to begin to comprehend their loss without immediately having to say goodbye. Another parent I supported almost 10 years ago still stops me in the street sometimes for a chat, and they’ve mentioned to mutual friends how much of a difference I made in their lives. It is always heart-breaking to go through these moments with a family, but knowing that the care and support they received will stay with them forever makes it more than worth it. Suffice to say that after 17 years of working in palliative care, I can't imagine doing anything else.

"Being a part of the team at Demelza also means that I’m supported. I’m not a robot! It takes a ton of mental energy to go through end-of-life care with a family, and you can come back to the office feeling totally drained – those are the moments when other members of the team step up. They’ll make you a cup of tea, let you vent about things if you need to, or just sit with you for a bit if you’re not interested in making conversation. It might not even be someone I work with every day; if my direct team are all away or busy, I know I can pick up the phone to someone from the Kent or South East London hospices and there’ll be someone who can chat to me for a bit. We all know how difficult it is, so having that safety net of support is so meaningful."