Putting the right care package in place really is life-changing. The difference the right support makes can be astounding. Even small changes can have a major impact on how a family is able to cope, can change the whole family dynamic for the better.
Respite isn’t just care in the hospice or at home, it can mean the chance for children to get out and experience all sorts of wonderful things that other children, other families take for granted.
I feel proud that Julia’s House can play a part in these precious moments, taking the care session out into the community. Josh, a young lad who can need oxygen to help him breathe was able to go to Scouts and get his first badge and because of our nurses and carers. Cameron, who has had a transplant, was able to go to after school football club.
I remember taking one little girl out to the park and seeing her utter delight at feeling the wind blowing against her face. Such a simple thing, yet so magical.
Mums and dads really see the difference in their child when that child is getting the chance to experience more, do more. It’s about giving the children a better quality of life, not just the parents.
All these trips and experiences are building up this wonderful bank of memories for the families so that if that child dies, the parents have something positive to hang on to.
Life can be very narrow for families so anything we can do to broaden their opportunities is a real bonus. But we always have to remember to work at the families pace, otherwise it can become overwhelming for them when they have never had so many choices before.
A large part of my job is assessing the needs of families – and by this I don’t just mean medical needs. These parents are managing children with complex medical needs and very quickly become experts in care. But that need for medical care can consume them, and they forget to stop and play with their child.
By looking at other ways of supporting – such as offering therapies and play plans – parents can discover all sorts of new things about their child.
One mum was having problems because her son wouldn’t go in his hoist – and he was too big to be lifted any other way. Our Play specialist was able to use a special song, and over time with her expertise, managed to soothe him and make him realise it wasn’t something to fear. His mum was astounded, she hadn’t realised he was capable of understanding so much.
Children are often capable of much more than we imagine – and it is wonderful when they surprise us like this.
We are careful to match the right nurse or carer to the families. Parents need to feel relaxed and confident about our choice - sometimes having a young vibrant nurse is what families need, for others it might be a more mature person.
You can have two families, each caring for a child with an identical condition, but no two children, no two families are the same. Everything we do is bespoke for each family because to work well, respite has to be flexible and fine-tuned to what that family actually needs.
I was a paediatric nurse in a health visiting team and referred one child to Julia’s House – and when I moved across to the charity, I ended up being that child’s Julia’s House nurse!
I love the contact we have with families and the chance to really get to know them. As a Julia’s House nurse you become someone they can rely on. I enjoy the fun side of being with the children but never lose sight of the need to be highly professional and medically proficient.
The children we look after are much more susceptible to bugs because of their conditions or the medications they are on. A common cold can make even a healthy child really poorly – but for some of our children it can be life-threatening.
Part of my role is to track the training of staff and make sure all our nurses and carers undertake regular high quality training – both mandatory and tailored to their specific roles. Julia’s House is very strict on policies and procedures and follows Care Quality Commission regulations carefully. There is a busy programme of training and practical sessions, mostly in-house throughout the year.
We try and make training fun and memorable, using team tasks and games - to help drive home messages – ‘Pass the Pathogen’ is a favourite! Even just reminding people of the importance of thorough handwashing, the most basic way of preventing the spread of infection.
Being part of a great, well-trained team, gives us the confidence to tackle any situation – and you never know what is going to be thrown at you. Sharing experiences with other care staff and families makes this a very personal way of nursing.
When a family is bereaved the one thing that doesn’t immediately disappear from their lives is Julia’s House. We are there for the whole journey and beyond, continuing to offer friendly support where it is needed. Our care doesn’t end with the death of a child.
When I first thought about working for Julia’s House I was worried I might not be able to handle that side of the job. But actually this is only a small part of what we do. Building a great relationship with families and the sheer variety of different medical needs makes this a very challenging but deeply satisfying career.
To any paediatric nurse even vaguely thinking about working for Julia’s House I would say give it a go. Come and have a chat or pick up the phone and find out more. You won’t regret it.