Hospice in the Weald for Children explained

“Tor Edwards, the Hospice’s Development and Communications Director, Fiona Ashmore, our Lead Children’s Nurse, and I have been working with local families and providers to make sure we can best meet their needs.

Many families are telling us they are struggling to access support and that currently they need to travel for up to an hour and a half to access day activities for their children.
We know that due to advances in technology and care children and young people are living longer than predicted previously and as such this puts added stress and strain on families as they look after their child. It also puts added strain on the limited resources available. We are going to be adding to that resource so that there is choice and availability for families in the area wishing for respite at home or day care – once the exciting new developments for the Children’s Centre are completed.”

“Our new Children’s service will benefit many families across areas of Kent and East Sussex, where there is an identified need for such provision as there are gaps in services that need to be filled. We will assess each child and young person’s needs to ensure we can put plans in place to support them and their families. We want to reach as many families in the local community as we can to ensure that they’re able to have fun, play and have experiences that other child have, and to give parents a much-needed break. So that they become parents again, even if just for a few hours.

We will build up trust with the families we support so that they know they can leave their most precious being with someone else and know they will be cared for at the same high standard.

We hope to be able to offer groups for siblings once the Children’s Centre opens, and family movie nights. Also, sessions where parents can meet other families in a similar position, as we are aware that having a child with any life-limiting or life-threatening condition can be extremely isolating.”

“The care the children and young people may require will be 24/7 and as such the parents are on call 24/7. They are the experts in the care of their child – we’ll be working in partnership with them to ensure that our nurses and trained volunteers can best meet their needs.
For example, one mum, Philippa, whose son Daniel accessed similar services, told us the difference this makes. She’s told us how Daniel’s diagnosis, at just eight months, was a bombshell as there was no history of Duchene muscular dystrophy in their family. They were just not prepared at all. Life suddenly went in a completely different direction.

She explained how hard day to day life is for families. They need respite both for the child to have a treat and be looked after, and for parents or carers to have some breathing space to cope. How a few hours just to do some shopping, or spend time with another sibling, or just have some time to be able to do something as a couple, can make the world of difference to a parent who is otherwise caring for their child around the clock. How to be able to become ‘mum’ and not ‘carer’ for a few hours can help to regain a sense of identity.”

“We are hoping to launch in the middle of September with home visits for a small number of families and gradually develop the service from there.”

“Families can refer into the service themselves by visiting the Children’s section of our website here. They can ask their disability children’s social worker or any of the other professionals that they are involved with to refer them.”

“Many don’t realise we provide free care to all our patients. But as the Hospice is independent to the NHS, we need to raise £8 million every year to fund our work. There are lots of ways you can support us, by making donations, volunteering for us and taking part in our events. Just visit the Fundraising pages of our website to find our more.