How the Respite Care Team Help Bring the Dreams of Children and Families to Life

Central to ellenor’s ethos is the principle of ‘holistic’ care.  This means caring not only for the patient but supporting their family members in a variety of ways. It also involves taking into account not only the child’s clinical requirements but their emotional, social, and psychological needs too. To do this, we offer a range of Wellbeing Services, including counselling, play and music therapy, and respite care.

Respite Care is focussed on providing temporary relief for parents and caregivers for ellenor's Children's Team, this means looking after children with life-limiting conditions. 

Our Children’s Care Assistant, Emma Leaver has been with the hospice for seven years, since she was just 18, and whose grandparents were both cared for by the charity. Emma puts the role of her team in far more poignant terms, “We’re here to make magical memories and provide the best care possible.”

Making Magical Memories

Emma works with a range of children across multiple settings. Some days, she’ll be visiting the homes of life-limited child patients to help them with everyday medical care and daily routines. Whether that’s homework or video games, whilst ensuring they’re fed, taken care of, and given the correct medication. Emma also practices sensory play, a form of interaction designed to help children with more complex conditions access colours and textures.

“That would mean play using sand, pasta, wet porridge – getting the child to feel different textures. We would then do a sensory session; making the room dark and getting lots of slow glow and ceiling lights for them to look at. We give foot and hand massages, do lots of arts and crafts, and – if the child is not able to participate – we’d paint their feet or hands to make pictures.”

On other days, Emma takes the children on trips to the zoo or cinema or supports the rest of the respite team at family events and outings. These can include visits to country parks or steam trains; activities which are designed not only to help life-limited children access the world in a new way, but also help the parents handle some of the social isolation issues that come with raising a child with complex needs.

Along with putting together care plans, providing personal and medical care from the child’s home, and taking kids to hospital appointments, Emma also spends her week planning special activities to engage them.

“I love my job”, says Emma. “It’s about making the most of the child’s life, and making their dreams come true.”

For one 16-year-old end of life patient, that dream was to go to the beach. Emma – who, as part of her role in our Respite Team, works with individuals up to 18 years old – was able to organise it. With the help of a minivan, some ice cream, and a trip to the aquarium, we were able to create an experience that would live long in the hearts and minds of the boy’s family.

“His Mum never forgets this trip – she always mentions it when I see her. Instead of families remembering the negative things from when their child was sick, they can think of the fun we had, instead – these are the kind of things we like to do at ellenor.

We’ve started making ‘Memory Books’ with the kids as part of their care plans. If we’d done a painting with them, we’d copy that into the book, and add some wording. Should the child later pass away or become unable to communicate, the parents – though they may not be accessing our services anymore – still have that memory, and I think that’s really important.”

May the Force be with You

For Star Wars lover Troy – a West Kingsdown teenager with spinal muscular atrophy type two – that dream was simply having the likes of Darth Vader and the Mandalorian lighting up his bedroom. To make it a reality, Emma brought in local artist Arthur Dess from Paint Prestige Murals, who painted the striking glow-in-the-dark scene of a light saber duel across Troy’s wardrobes.

“Troy was truly amazed by Arthur’s work. He was frozen – he couldn’t believe his eyes!”

However, as Emma explains that building rapport with the children in her care is not only vital – it can take a long time, too.

“Initially, Troy didn’t trust us, he was wary – he’d always ask his Mum to do things for him, instead of me. It took about two or three years for me to be able to assist him with medical equipment such as helping to put him into his hoist chair. Now, he lets me do this all the time.”

Empathy, Love and Care

The Children’s Respite Team also work hard to build that relationship with the child’s family – explaining more about our services and ethos and forging a trusting connection.

“When families are referred to ellenor, I don’t think they really understand the level of care we provide. Some families say yes to respite care straight away, while some decline, but then choose to access it later on down the line. Some parents struggle to leave their child with us as they are so used to doing their daily care - but – once we’ve built a relationship with that child – the parents feel more confident.”

So, what kind of skill set do you need to succeed in Children’s Respite Care, and form lasting bonds with patients and families? “Empathy, love, and care.”

Emma believes “you need to have a caring background, be confident in what you’re being trained to do, and have excellent communication: with children, families, and other healthcare professionals.

The children value us a lot; you can tell by the way they act. We have a boy who we visit two days a week, and, aside from his Mum and Dad and other care professionals, we’re the only other people he sees.

As soon as you talk to him, he smiles – he is so used to our voices. The kids get a lot out of us being there, as a lot of them don’t go to nursery as they too unwell to attend. Us going in provides a different environment for them.”

Pushing Past the Limits

Whether it’s helping children with life-limited conditions break down sensory barriers, staying with siblings while parents are making hospital trips, or helping families make unforgettable memories, our respite team proves that there are no limits to what we will do to care for children and families.

Emma and her colleagues are not only highly trained, passionate, and dedicated, but genuinely love what they do. With the backing of Gravesend’s generous local community – upon which the charity relies on for almost the entirety of its funding – we can continue to push itself to the limits to provide the best possible care and support to children and their families.

And, well… that can offer a little respite to us all.