Fun, laughter, adventure, challenge – not words you would automatically associate with a children’s hospice!
Julia’s House is a truly amazing place to work. We are constantly looking to improve what we do for families, what we can offer children.
We don’t want illness to be a barrier to a magical childhood.
Who says you can’t make mud pies just because you have a medical condition? Children can have a brilliant time outside getting grubby and still have all their clinical needs taken care of.
Twigs, leaves, the feel of the sun on your face, listening to the wind in trees or the sound of birds – all perfect for children with sensory needs. There are so many sights, sounds, smells and interesting objects to touch.
People often think that the children that come to Julia’s House must be far too poorly to do anything adventurous, that they must need to stay indoors all day.
When a child is very poorly their world can shrink away because they need constant care.
By taking groups of children out with nurses and carers they can still get all the same expert care but feel part of the outside world.
Children have a lot of fun coming to the hospice but we love to organise trips in the school holidays for children to get out and about, particularly in the countryside.
We have had several successful outings to Holton Lee with its woods, heathland and plenty of space. A big, open environment is a fantastic chance for children - no matter what their physical or mental limitations - to just be children.
And if it rains you can put a rain cover over a wheelchair. Rain doesn’t have to stop play!
Julia’s House offers the most fantastic programme of events, trips and treats for siblings of poorly children. Many of our children would love to do what their siblings are doing, so we are exploring more and more ways to help them achieve this.
Crabbing, kayaking, cinema outings – almost anything is possible with careful planning, a skilled team and lots and lots of risk assessment. When the children get excited it just makes me want to try even harder to make these dreams a reality.
We have a group of older boys who have Duchenne’s muscular dystrophy, a devastating muscle wasting condition. They get together for activity sessions but also for days out – the Julia’s House care team are determined the boys should not miss out.
Film trips, Mexican food nights, a Harry Potter themed sleepover, X-box games, film-making and water balloon fights are among the activities the boys have enjoyed. They get to choose what they would like to do so everything is tailored around them.
If you are in a wheelchair not only is getting out an about difficult, but when you do you can find people looking at you because you are different.
It’s great being able to take out a group of young people – all in wheelchairs – for a VIP day and watch them enjoy a shared experience. They are a gang, a crew, all in it together – no longer feeling awkward about being the only person in a wheelchair. You can see them growing in confidence.
I just love planning those days, those experiences and being able to share special times with children and families.
We are determined to give families respite on their terms. We want parents to have as much choice as possible – this isn’t a rigid 9-5 service, it’s flexible and adaptable.
We can look after children in their own homes to save mums and dads travelling or children can come to the hospice for group sessions. Either way we tailor all activities round the child and how they are feeling.
If a child has had a rough night we might arrange a therapy session, or a quiet time in the sensory room. Sometimes just a cuddle and a story is what’s needed as part of a calming day, other times it might be very full on with fun and activities and laughter.
The vibe at the hospice is such a positive one. I had been working on a children’s surgical ward in a hospital before I joined Julia’s House and I remember coming in to sample a pre-school session. It was a busy, buzzy, friendly open environment, the complete opposite of clinical.
On the hospital ward I spent more time performing the mechanics of care than actual caring. There was no time for quality time or to consider the challenges those families would face outside hospital.
Being a Julia’s House nurse is such a different mind-set from what I was used to. There is no pressure on anyone to constantly intervene to carry out medical procedures. We need to be reactive if the situation demands it but outside that our role is to support the whole family in every way we can.