A new resource that will improve the lives of thousands of young meningitis sufferers is being developed by the Meningitis Trust, as the disease heads towards its peak season at the end of September.
The charity, which supports victims and their families after meningitis and spreads vital awareness of the disease across the UK, is working alongside a number of Royal Colleges, including the Royal College of Paediatrics and Child Health to produce a journal for young victims.
The Yellow Book will enable a new Quality Standard measure from the National Institute for Health and Clinical Excellence, NICE, to help to ensure that victims and their families receive information and support following the disease.
It will provide information and advice, signpost further help and reading, log follow-up appointments and give a valuable, personal record of any changes to their child’s health or wellbeing.
Dr Alistair Thomson the vice president for education and project lead for the Yellow Book Programme, at The Royal College of Paediatrics and Child Health, said: “Leaving the hospital and the watchful eye of medical staff can be a daunting prospect for families, so this pioneering new resource – The Yellow Book – will provide those coming to terms with their child’s diagnosis, with much needed reassurance, support and guidance.”
It’s a first for meningitis victims in the UK. The Trust had found previously that some parents were making their own journals for their children to take to doctors’ appointments and into schools.
One Mum who did this for her son was Nicky Price who said: “When Brogan recovered from meningitis, we knew very quickly that there were some complex after-effects from the disease, but it wasn’t until Brogan was at school that we realised the true extent and how this would affect his learning.
“We wanted to tell people about the impact that this disease had on his life, so that they understood and could give the right support – that’s when I put together his portfolio. I am delighted that the Meningitis Trust is putting together this Yellow Book journal – I wish that had been available when Brogan left hospital, it would have been so helpful to us as a family.”
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