“I’ve had an interest in respite for many years, I was involved in a project that was building a sensory garden for an NHS run respite centre in West Sussex, and at the grand opening one of the Mum’s came up to me and said, “it’s all great and good, with the press and the mayor etc, but we can never get in here.”
At first, I thought she meant the access, and that we had designed it wrongly, but she was referring to the fact that there were about five hundred children in the catchment area that fitted the criteria to get a service from the place, but they could only have thirty children that could access it – that was their maximum capacity.
I ended up helping her with the contacts that I had developed through the project to try and get her some more support there, so with a couple of others I arranged some fundraising so that her child could go and get a proper break, at a private respite centre. It was at the far end of Essex in Clacton, so a fair trek, and I had no idea at that stage about introductory visits and risk assessments etc, but eventually it happened, and the child had a few days staying there and the Mum got a break, for which she was incredibly grateful. Then somebody else came up to me and said, “you know what you did for her, you couldn’t do that for me as well could you?” then another, then another and it just grew from there really”
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At The Children’s Respite Trust caring for a child with a disability is something that never ends. It can mean being there 24 hours a day and 365 days a year.
Many families of children with a complex medical need or a profound learning or physical disability really just need a break – a chance to do something that the rest of us often take for granted.
The Children’s Respite Trust is a charity that improves the lives of children with profound learning and physical disabilities by helping them to get a short break throughout East Sussex and most of Kent and West Sussex. Just a little support can go a long way to helping a family to cope with the strain.
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