We build up trust with the family and with the child so that when the difficult times come, they feel totally comfortable having us around. We don’t wear uniforms or carry lots of scary medical things. It is important to keep a relaxed atmosphere for everyone. That way, when respite changes from play to the need for more medical care it comes naturally. The child isn’t frightened because they understand that we are friendly and there to help them – and to support their mum and dad.
It means that on a really bad day parents have the confidence to draw breath, take a break – go out the door knowing there is someone there to fill their shoes for a while.
I always thought I had a pretty good understanding of what these parents are going through until I had my own child. They are just so brave it can be heartbreaking to witness.
We respond to what families need from day-to-day. I am proud of the fact that by offering totally flexible care we are giving families a choice over the type of support they want, where and when they want it. We provide a totally bespoke service for each family.
Sometimes parents just want the reassurance of having us at the end of a phone, sometimes they need to use our service intensely. Whatever they need, we will try our utmost to give them every bit of support we can.
The help we offer can take many forms – like helping a teenager write goodbye letters to all her friends, helping a mum have a difficult conversation with their child or helping a dad make funeral arrangements. I feel privileged and humbled to be part of these intimate and emotional moments.
Julia’s House gives each bereaved family £1,000 towards the cost of the funeral. The last thing we want parents to worry about is money. Many families suffer financial hardship, having to give up work to care full-time. This loss of income is just more anxiety for the family when they are already going through so much.
Julia’s House is like a safety net ready to catch the family, a lifeline. They know they can call on us at any time in an emergency. Being able to offer families the chance to bring their child home to die is an important part of what Julia’s House is about – giving mums and dads choices.
It makes an enormous difference for parents to have the chance of a bit of normal life, to have care for their child in those last few weeks at home, in familiar surroundings, not in a hospital. For the child to be able to see friends and family, cuddle pets. It is a much more intimate, comforting experience for everyone. Parents can make a cup of tea when they want to and sleep in their own beds.
We can’t change the outcome for these families, but we can change the quality of the journey.
I am really excited about the new Wiltshire hospice. It’s a fantastic meeting place for children and parents - and for those fundraising for Julia’s House, it will be a physical reminder of the difference their support is making to the lives of families living in their community.