FORGET WHAT YOU THINK YOU KNOW ABOUT HOSPICES - JULIE’S STORY WILL CHANGE YOUR MIND

When people hear the word hospice, many picture wards and hospital beds. At ellenor. It’s so much more than that. 

For Julie, a Clinical Nurse Specialist in ellenor’s Hospice at Home team, hospice care means being there for families in Kent and Bexley - in their homes, their living rooms and kitchens, and the everyday spaces where life is lived.

An average day might involve triaging urgent symptoms, carrying out first assessments,

arranging equipment or night sitters and updating EMIS - the patient care software that connects ellenor with local hospitals and GPs. But beyond the clinical work, Julie’s role is about something deeper: offering a steady presence that reassures families, eases moments of crisis, and helps patients remain where most want to be – at home.

“We have the hospice and the inpatient ward,” Julie clarifies, “but that looks after a small percentage of patients. We support the vast majority of our patients - there are hundreds - from their own homes in the local community.”

That support can include ordering crisis medication, arranging urgent night sitters, managing symptoms to keep patients pain free, and planning ahead to make sure a person’s wishes are respected. Julie’s caseload spans people living with cancer, COPD, dementia and frailty – from patients in their 20s to those over 100 years old - and first contact is quick, structured; clinical. Referrals are triaged.

“If it’s urgent, it gets dealt with straight away; if it’s not, it gets put on my duty list for the next day. I will contact the patient or their family member, do a brief assessment over the phone to make sure they’re happy with the referral. Then I’ll work out how quickly I can see them. I generally prefer to see them in their own homes – you get to see the environment they’re living in, meet the family; understand the setup of the home.

“It’s a privilege being invited into someone’s home,” Julie says. “Often it’s about giving time, listening, and respecting the silence.” Small gestures matter too – even accepting a cup of tea shows families she is not rushing off. At ellenor, she usually sees just three or four patients a day, which means she can stay for as long as she’s needed.

The quiet rituals matter. “Nine times out of ten, if I’m offered a hot drink, I say yes because the person offering it knows that you’re not rushing off; knows that you’re going to stay and listen to them.” One reason she left a previous role - in which she saw 15 patients a day – was to work the ellenor way. “At ellenor, I see three or four patients each day. Which means I can be here for as long as they need me - sometimes hours at a time.”

Julie’s team doesn’t work in isolation, however: it draws its strength from a wide network of partnerships with other local service providers. ellenor has strong relationships with paramedics – who often call on ellenor’s expertise – as well as the Red Cross, who assist ellenor with transporting patients at short notice.

Think about the ideas you had about hospice care when you started reading this article. How does the picture painted by Julie’s work differ from it? Because hospice care, Julie reiterates, is not - contrary to common misconceptions - “just about dying”. It is complex, specialist nursing delivered behind ordinary doors.’

And, when it comes to breaking down those myths about hospice care, Julie’s work starts with the patient. “When someone is referred to ellenor, I try to explain that the referral doesn’t mean they’re going to die instantly - just that they’ve been diagnosed with a condition that they’re not going to get better from. I let them know that we’re here to support them, help them manage their condition - and focus not on the quantity of life, but the quality. If I do my job right, I can see the visible relief on the patient’s face at the end of that conversation.”

It’s a rich, rewarding role but the pressures are real. “NHS underfunding affects it hugely. The big turning point was COVID, and the fact that at ellenor we’re much more accessible – we do answer the phones, we are there, we will provide that support. I think we do cover a lot of the NHS shortfall,” Julie continues. “Whatever’s going on with the NHS, we’re still there in the background – we step up.” At ellenor, the phone never sleeps.

The role can take its emotional toll, too. “There are still those patients that touch you - where you need a few moments to yourself after coming off a difficult call. Sometimes you wake up in the night and worry about patients. I have a good home life and a lovely, supportive husband, which helps. Breaks are important, and I always try to make sure the two of us have a holiday to look forward to - otherwise it can be overwhelming.”

Julie knows the taboos, too. “People think what I do must be so depressing, but it’s the best job I’ve ever had, to be honest. Whether the patients have weeks or years, we focus on helping them make the most of their remaining time: keeping their symptoms controlled and still letting them be them – enabling them to do normal things and not have to think about their condition every day.”

ellenor’s ethos of holistic care aims to support not only its patients, but their loved ones, too.

“I can’t cure them,” Julie says, “but I can promise that we will always be there - to answer the phone, to listen, to comfort, and to support the whole family.”   For her, that is what hospice care truly means. When asked to describe ellenor in three words, she chooses: “Comforting; community; family.” Of her colleagues: “Resilient, caring and hard-working.” And of herself? A dedicated clinician, most at ease sitting with patients and their families.”