Helping Children with Life-Limiting Illnesses Live, and Die, Well

It’s every parent’s worst nightmare – being told that your child has cancer. Yet tragically, it’s one many families will face, with around 3,755 children diagnosed with cancer every year in the UK.

A cancer diagnosis in a child is enough to collapse families, crush belief; to have parents searching for hope and help. In these challenging, harrowing circumstances, ellenor is one of the organisations standing with families facing child cancer and other life-limiting or –threating conditions – from diagnosis until discharge.

ellenor is a hospice charity that provides clinical nursing support to children, throughout Dartford, Gravesham, and Swanley, who have either an acute oncology diagnosis or a life-limiting condition. This support takes place from wherever the family prefers, such as their home or school, to facilitate a comfortable, familiar environment for the child. This helps reduce the need for frequent and costly hospital visits, relieving the burden on both the child and their family.

Working closely with a network of care providers throughout London and its surrounds, ellenor delivers chemotherapy, palliative care, and end-of-life care to children 24 hours a day, 365 days a year: enabling children to live well, and to die in a peaceful, dignified setting, with their family by their side.

When a child is diagnosed with a life-limiting or life-threatening illness – terms that can encompass cancer, as well as a variety of complex and chronic conditions including neurodegenerative diseases – it’s the start of a long and extremely challenging journey for the family. That’s why ellenor’s support also begins as soon as the child is diagnosed.

It’s an end-to-end approach that, as ellenor’s Lead Nurse for Children’s Services Megan Watkins explains, sets ellenor’s Children’s Services apart from traditional nursing services.

“Supporting oncology patients from diagnosis is unique for a palliative care team; I don’t know of any other team that does it. Providing that service enables all children with cancer to access wellbeing and counselling support throughout their journey, because we recognise the impact that a diagnosis of cancer has not only on the child – but on the whole family.”

Crucially, Megan adds, this means that, should treatment fail, families have a team around them who already know them: who have, in many ways, been on that journey with them since the beginning. It’s a type of care that zooms not in, but out – viewing the picture of the child’s care through a wider lens that takes into account their non-clinical circumstances.

“Compared to typical community nursing teams, we’re able to offer families much more holistic care that addresses their physical, social, emotional, and spiritual needs,” Megan says. “For example, their social needs: how can we help the child to still feel a part of, and engaged with, social life? To find and interact with friends they get along with? To enable them to access different social events?

“We look at the child’s emotional needs, too: recognising the impact their condition might have on those emotions, giving them the opportunity to ask questions they might have, as well as making sure they have the right support in place – and the right people around them to answer those questions.”

She also emphasises the split between being task-focused – as many traditional community nursing teams are – and being patient-focused, an ethos at the heart of ellenor’s approach.

“While community nursing teams often focus on completing specific tasks, such as taking bloods, at ellenor, our approach is more comprehensive. When attending to procedures like this for an oncology patient, our focus extends beyond the immediate clinical need. We take the time to understand how the family is coping and consider the broader spectrum of support we can provide, including their emotional and social needs. This enables us to offer a more holistic level of care, not because other community nursing teams don’t care about these aspects, but rather because we have the resources and capabilities to meet those needs.”

"How does that wider support look? In addition to the clinical care ellenor provides its younger patients with, the hospice charity also offers play therapy, music therapy, and art therapy. For the families of children who have passed away, bereavement support and counselling are available for adults and older children. And, for younger grieving family members, ellenor’s GEMS (Grief: Every Memory is Special) days bring together children in similar circumstances to open up about and process their grief in an inclusive, activity-oriented environment.

“When there’s a child with a diagnosis, there are almost always other siblings, behind that child, who are equally impacted,” adds ellenor’s Director of Care Linda Coffey. “We support those siblings, as well as the family and the child. For us, it’s as much about working with those siblings, giving them time – time they may not get otherwise.

“The child has a diagnosis that takes up most of the parents’ waking hours, and there is a danger that without the type of support we give, family life can get forgotten.”

For this reason, ellenor also offers respite services to the parents or carers of the children they support looking after their life-limited son or daughter to enable them to spend quality time with their other children, and each other; or simply catch up on the day-to-day demands of ordinary life.

In this way, Linda explains, ellenor is helping to create a positive chain of events – or at least prevent a cycle of negative ones – in a kind of ‘domino effect’ on the families of the children it supports; as well as the UK’s wider healthcare systems.

“Us supporting the child’s family, and helping them to cope, means they’re less likely to need to rely on other services themselves. It’s a knock-on effect: if you can support the parents to manage their child’s condition, they won’t need to go down the route of mental health support or end up with health conditions themselves as a result of the stress.

“If you don’t support the whole family, things can end up in a downward spiral.”

The need for children’s palliative services is vital, and – with advances in the efficacy of modern medicine and interventions extending life expectancy for life-limited children – it will only become even more integral. However, Megan, says, the recognition of the importance of children’s palliative services – and families’ access to it – is trending in the opposite direction. “Many parents are afraid to consider palliation because they see it as being an alternative to active treatment; that, in accepting it, they’re also accepting that their child is going to die. This is not the case.”

Linda agrees, adding that it’s about “changing the story” around hospices: who they serve, what they do, and how they support local communities. “Instead of focusing so much on the end-of-life aspect, ellenor is focusing on the living aspect,” she says. “Regardless of whether it’s adults or children, there is this fear that the minute you are accepted by a hospice, or come through the doors of a hospice, that that’s it – you’re never going to leave again. And it couldn’t be further from the truth.”

ellenor’s children’s team also draws on its close relationships with local hospices, such as Evelina, and tertiary hospitals. In addition, ellenor maintains close ties with larger, national charities, including Hospice UK and Together for Short Lives – the latter of which, in particular, is doing brilliant work in uniting the country’s children’s hospices.

Yet despite acknowledging the importance of national charities to the ecosystem of children’s palliative care, Linda emphasises the equal importance of supporting smaller, local charitable organisations, too.

Organisations like ellenor.

“Big charities, national charities, tend to be the ones people think of when it comes to donating and supporting. I get that. But we, ellenor, are this area’s local hospice. Without us, the services we provide throughout Kent and Bexley wouldn’t exist in the way they do now. Little organisations like ours need that support from our local community – the same people whose families, friends, and neighbours we’re supporting – to survive. That’s the reality.”

So what can you do to support ellenor?

You can make a donation to contribute to the £7 million ellenor must raise every year to continue providing its all-important care and support. Or, as Megan explains, it can be as simple as giving up something as simple as your time – lending your skills or talents to the cause.

It could be the local racing car driver’s club lending their automobiles to ellenor’s social events for children and their families. Or the community-based artists hosting creative sessions to entertain and engage the children through sensory, stimulating activities.

Because, after all, that’s what ellenor does. Ensuring that children aren’t only able to die – peacefully, with dignity, at home, surrounded by loved ones – but live, too. To enjoy meaningful, happy, and fulfilled lives – however long they may be.

“Our care is very much about enabling these families to live,” Linda reiterates. “Not sit there waiting for the inevitable. For us, it’s never just about the dying. It’s about the living. Always.”

ellenor, by the numbers:

• ellenor provides support for more than 2,800 patients of all ages with life-limiting conditions, as well as their families.
• In 2022/23, ellenor’s team made 3,176 visits to its patients’ homes in the Kent and Bexley communities, and its Children’s Services made 3,829 contacts – an increase of 4% from 2021/22.
• That same year, ellenor provided 2,309 counselling sessions, an increase of 43% on the year prior, and supported 34 children through its GEMS group.
• ellenor supported 163 patients for palliative care and end-of-life admissions in 2022/23.