When Student NT editor Desiree Deighton explains to others that her elective placement is at a children’s hospice, she often hears “oh gosh, now that’s one thing I couldn’t do!” Except that, for Desiree, it was the happiest place she had ever been…
On my first day I met amazingly brave children and families, some I knew from their stays on the children’s hospital wards.
We spent the morning in the sensory room then music sessions, where we all sang songs from The Lion King and siblings ran around playing and laughing.
Then at lunchtime the cook called out that lunch was ready and he quickly instructed me with a smile to grab a plate because ‘everyone eats together’.
Completely bemused, I watched in awe as the children, parents, care team staff, cleaners and senior management all came and sat down, mingling, chatting, laughing, and pouring each other’s drinks.
I felt like Alice in Wonderland.
“However, medical technology and treatments are continually developing, which means that these children are likely to have an extended life span than even ten years ago”
Children’s hospices differ so much to adult hospices, and because the children’s and families safeguarding is paramount, they tend to be private places. Therefore it is not widely or accurately known what they do.
Yes, hospices do offer support in acute deterioration or sudden death, but a large proportion of their rooms are for respite and symptom control for children with Life Limiting conditions and their families, and they also do home visits.
40, 000 children and young people in the UK have a life limiting condition, meaning that currently or at some point in the progression of their illness, their life will be limited in quantity or quality.
However, medical technology and treatments are continually developing, which means that these children are likely to have an extended life span than even ten years ago. Individuals with Duchenne ’s muscular dystrophy, for example, often live into their twenties and even thirties, with the assistance of ventilator systems.
Children diagnosed with neurological and/or degenerative conditions may receive ‘palliative care’ from birth for well over a decade, so ‘palliative’ is not just for those who are actively dying.
“Hospice staff are AMAZING and it is so important that the message about everything hospices do is known by professionals”
‘Palliative’ is derived from the Latin term ‘pallum’ meaning ‘to cloak’, and aims to manage the symptoms of chronic illness, including pain, nausea or seizures. Where there may be no curative treatment but quality of life is still paramount.
The longevity of children with ‘life limiting’ conditions is proven by the hospice having a teenage wing, where young people stay usually without parents. Everything is tailored towards them, and some come and stay well into their twenties after making great friends throughout the years.
They 100% choose what they want to do, wear, eat and when they go to bed. Whether its movie nights in the cinema room, discos on the light up floor, poker nights, computer gaming, baking or trips out, these young people are full of enthusiasm and banter, which creates an informal support network.
Children’s hospices can give families the most precious gift in existence: time. Time for parents to just be with their loved ones, without the worry of watching the ventilator or drawing up medication, giving them important respite from the 24 hour care needs.
“Parents may resist involvement with anything labelled ‘palliative’, so it is crucial that we can give an accurate explanation of how the benefits can be life-changing”
Time for the child to forget about their diagnosis because they are too distracted by playing outside or making gooey slime.
Time for them to make friends with others; finding solace and common ground with each other, whether it’s “I haven’t had a bad chest infection this year, have you?” or siblings sharing that “yeah, my sisters very poorly too”.
Most importantly, the gift of ‘time’ to make memories all together before and after a child passes away; hospices have the facilities to keep the child cool until the funeral directors collect them, so that parents and siblings can pop in to hold their hand and talk to them, any time day or night.
‘Memory making’ of clay footprints, creating family trees with handprints, and keeping a little lock of hair is often chosen by the parents.
Hospice staff are AMAZING and it is so important that the message about everything hospices do is known by professionals, because nurses on hospital wards are the front line for introducing the idea of using a hospice.
Parents may resist involvement with anything labelled ‘palliative’ or ‘hospice, so it is crucial that we can give an accurate explanation of the services and how the benefits can be life-changing. This placement has for certain, changed mine.
Find more information here: www.togetherforshortlives.org.uk