Children’s Hospice Week 2022: How ellenor Supports Life-Limited Children and Their Families

This year, 20th to 26th June marks Children’s Hospice Week.

It’s the only week of the year dedicated to shining a light on the palliative and hospice care services that exist for children with life-limiting illnesses in the UK. 

In 2022, the theme of Children’s Hospice Week is #ForTheChildren. And it’s just that: aimed at raising funds for, and awareness of, the challenges faced by the thousands of UK children and their families, with a life-limiting condition.

But the week is also about increasing the visibility of children’s hospice services. About exploring and emphasising the care and support that exist to help those children get the most out of the time they have. To maximise the quality of their lives and be there for their families and carers.

During Children’s Hospice Week 2022, we want to start a conversation around the support structures for children with life-limiting illnesses and their loved ones. And, of course, to put the stories of the brave, remarkable children under our care at the forefront.

So why is it important to talk about children’s hospice care? To incite a two-way dialogue about how crucial services like ours are – not only for caring for the child, but in supporting their families?

The answer is simple – because, right now, most people aren’t talking about children’s hospice care. Many parents are going through life without having these conversations – not because they’re reluctant to confront such a difficult subject matter, but because they haven’t had to.

For these parents, their children haven’t been touched by life-limiting illness. Everything is good, their kids are well, and everyone they know is alive and well. Children’s hospice care’s importance – nay, existence – couldn’t be further from their minds. And, as a result, UK families are going through life without engaging in that discourse around children’s hospice care.

So, what happens when – at some stage or another – that family is touched by life-limiting illness?

Herein lies the importance of talking about children’s hospice care now – raising awareness of who (and what) is involved. Do this, and we can normalise children’s hospice care – stripping away any taboos that exist around it in the process.

So, what services do hospices like ours provide to children with life-limiting illnesses and their families?

Here at ellenor, #ForTheChildren isn’t simply a hashtag – it’s an ethos. We’re one of the only hospices providing acute oncology and end of life care to life-limited children from their own homes. We care for babies, children, and young people of all ages, and offer a transitioning service: helping teenagers seamlessly adapt to an adult care environment.

Our care is around the clock, too. Working together with other providers to ensure access to care and support 24 hours a day, 365 days a year, our clinical nursing staff support care for life-limited children in the space of their choice.

Whether that be the hospice, or their own home within the Dartford, Gravesham, Swanley and Bexley communities.

Children’s Hospice Week is – and always will be – #ForTheChildren. But we also need to recognise the importance of supporting their families. Of being there for the parents, the siblings, the grandparents, the aunties, uncles and the friends – all of whom are living through one of the toughest times they’ll ever face.

At ellenor, supporting the family takes a range of forms. 

Respite care

Ranging from a couple of hours to a full day, we provide holistic care for the life-limited child (and sometimes their siblings) from their own home. While the children get creative – exploring different textures through play, or sensory activities, listening to their favourite songs – their parents and carers get a break. That might be to nip to the shop, take a nap, or spend time with the other siblings.

Counselling

Allowing children and adults alike to explore their emotions and experiences in a safe space, with a qualified professional. And, for 7- to 16-year-olds, our GEMS (Grief: Every Memory is Special) groups bring grieving children together. There, they can share their feelings, make friends, and learn about coping mechanisms in a friendly and supportive space – all while creating memories of their loved ones.

Play Therapy

Helping children and adults alike unpack painful feelings in a controlled creative environment. It’s an innovative, intelligent approach that can help people of all ages understand trauma through play, while developing skills around coping with grief as well as working with parents to help them support their children and manage their deteriorating conditions.

It isn’t just ellenor, either – hospices around the country work tirelessly to provide life-limited children and their loved ones with unparalleled levels of care and support.

So, this June, let’s talk about it. 

Let’s all start trying to understand more about what children’s hospice care is – regardless of whether it’s directly affected us yet. Let’s figure out a way to speak up and out about all the amazing work the UK’s children’s hospices are doing for our life-limited young people – through whatever platforms are available to us. 

And let’s add our own individual viewpoints and voices to the dialogue to start those all-important conversations. Be they with friends, family, colleagues, or the general public.

Every life-limited child is someone’s daughter; somebody’s son. So, even if it’s with a simple conversation – a sole piece of research, or a single post on social media – do your bit for them this Children’s Hospice Week.

For the hospices. For the families. #ForTheChildren.