THE ESSENTIAL WORK OF CHILDREN’S PALLIATIVE CARE NURSES

Kristene has been a children’s nurse for almost nine years. She began her nursing career at Queen Elizabeth Hospital in Woolwich in the children’s general ward, caring for children with asthma and diabetes. When offered a position in the children’s oncology ward she had some initial reservations but recognised that “it’s always good to upskill yourself” and subsequently accepted. Over each child’s three-year course of treatment, Kristene loved supporting their families and became a kind of extended family to children under her care. So when she met Tina, one of ellenor’s Palliative Clinical Nurse Specialists, Kristene was keen to apply for a position within the friendly, dedicated team. “To do this job, you need good communication skills. You don’t want your words to be misconstrued and you need to be able to diffuse heated conversations. You also need compassion, adaptability and problem-solving abilities. You’re often on your own in children’s homes so need to be able to think on your feet.”

“Every day is different,” Kristene says when asked about her typical day. “While each week our team attends the same appointments to care for our oncology children, the rest of the week we’ll visit families in their homes, offering any support they need.”

“As a small team of clinical nurses, we have about 50 patients in our care,” Kristene begins. In this community-based role, an ellenor paediatric nurse will spend part of their week visiting oncology patients at home or school, administering medication and taking routine blood for chemotherapy.

“The Respite Team provides relief to families throughout the week - depending on the needs of the child and family”, and once a month the nurses visit children in their care with life-limiting conditions. Kristene adds that families can contact the team to request more frequent visits which the team are happy to offer. “It’s a very flexible job,” Kristene explains, “we have a few set appointments each week but plans can change and new visits crop up.”

At ellenor, care is typically provided from Monday to Friday between 8:30 AM and 5:30 PM unless a child needs end-of-life care, in which case the team is on hand 24/7. “We don’t stay in the family’s home or take shifts. Rather, if the tertiary team feel the child needs something, we’ll come out".

While Kristene finds her role fulfilling, it hasn’t been without its challenges. “This kind of nursing isn’t like changing wards. It’s a specialised area. When I first started, I struggled seeing kids in their own homes, it felt like I was invading their safe space, but ellenor was so supportive; I was allowed to settle into the role at my pace - unlike some previous roles I’ve had. It was such a big culture shock.” ellenor nurses continue to be supported with their caseloads by fortnightly multi-disciplinary team meetings. “The whole team can help if you’re having difficulty with something at work,” which can still occur even after years of experience.

Kristene has been a children’s nurse for almost nine years. She began her nursing career at Queen Elizabeth Hospital in Woolwich in the children’s general ward, caring for children with asthma and diabetes. When offered a position in the children’s oncology ward she had some initial reservations but recognised that “it’s always good to upskill yourself” and subsequently accepted. Over each child’s three-year course of treatment, Kristene loved supporting their families and became a kind of extended family to children under her care. So when she met Tina, one of ellenor’s Palliative Clinical Nurse Specialists, Kristene was keen to apply for a position within the friendly, dedicated team. “To do this job, you need good communication skills. You don’t want your words to be misconstrued and you need to be able to diffuse heated conversations. You also need compassion, adaptability and problem-solving abilities. You’re often on your own in children’s homes so need to be able to think on your feet.”

For Kristene, the role is full of positivity. “Children’s hospice care isn’t about unwell children and families losing hope like people might think,” Kristene explains. While it’s not a fun role, it certainly has fun, light-hearted moments, as working with kids tends to bring. Palliative care is often misunderstood. “It isn’t just about caring for someone who’s dying,” continues Kristene. “A lot of children under our care need palliative support from the moment they’re born. At ellenor, we see and support these children throughout their lives.” And support extends beyond clinical care; “It could be counselling, for example, and the nursing intervention could come later in the child’s life. We help give children the best start and continue that for as long as they’re with us at ellenor. From the time of diagnosis, if curative treatment isn’t appropriate, we spend time with the family. We make holistic assessments and personalised care plans with them to provide the highest possible standards of care for the child.”

It’s the individualistic nature of care plans that makes ellenor’s Children’s Team so essential. ellenor gives tailored emotional, psychological and spiritual support to children with life-limiting conditions and their families, assessing each person as an individual. Patients and siblings can work with ellenor’s Play Therapist and Music Therapist. “We can also contact the child’s school and work collaboratively with the teaching staff to ensure the child receives adequate support in the classroom.” Beyond home and school, community is an important part of ellenor care and the Children’s Team organises events throughout the year so families can socialise with others in a similar situation.

Working at ellenor, Kristene finds similar aspects of her role rewarding as she did working at Queen Elizabeth Hospital. “Becoming part of the family’s life, gaining their trust and overcoming challenges together is so special and shows you’re doing your job right.” To help families put their trust in ellenor’s children’s nurses, once a nurse is allocated a family, they tend to stick with that family. Other nurses will occasionally visit so that in the event of a nurse being off sick or on annual leave, there’s still a familiar face caring for the child.

“Symptom management and care planning are important parts of what we offer families,” says Kristene. Providing comfort in a child’s final weeks is also essential to the Palliative Care Team. “If we know a child is going to pass away quite soon, we have kind, honest conversations with their family about what to expect, we take time to understand their wishes for the final weeks and support them in making memory books if they haven’t already. We also encourage them to think about how family life might look after their child dies.” Conversations like this help to prepare families for the difficult time ahead.

But ellenor’s Children’s Palliative Care Nurses cannot offer this essential work without funding. “Financial donations are at the top of our requirements list to keep our hospice running,” Kristene declares. “Over the past 10 to 20 years, a lot more children are transitioning into adult services as palliative care has evolved so much. Children in palliative care are living much longer because they can have a hospital in their homes.” When children transition into adult hospice care, “sometimes, the support isn’t there anymore”, often because of the larger caseload. Funding, funding, funding is needed to recruit more specialist paediatric nurses and upskill nurses keen to work in the children’s hospice sector.

Awareness is also critical. “For the Children’s Team, we need the public to know we exist and can help children who need support. We want to inform parents that they can refer their child to us if they’ve been diagnosed with a condition that is sadly going to shorten their life or make their health very precarious. Sometimes children who would not benefit from our support somehow slip through the healthcare net, and we are keen to ensure our help gets to those who need it.” So please, spread the word about ellenor’s Children’s Team. You never know who it might help.