A new resource that will improve the lives of thousands of young meningitis sufferers is being developed by national charity, the Meningitis Trust, as the disease heads towards its peak season at the end of September.
Every year 1,700 children fall victim to bacterial meningitis and septicaemia in the UK₁ – a disease that can strike in minutes and kill within hours. New research₂ published by the charity last month showed the true and often hidden impact of the disease, uncovering the range and extent of after-effects that children can be left with. These effects can be life-changing.
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 on the resource, which will take the form of a journal for young victims. The journal, referred to as the Yellow Book, will enable the delivery of a new Quality Standard measure from the National Institute for Health and Clinical Excellence (NICE), ensuring that victims and their families receive information and support following the disease.
Once introduced, the Yellow Book will be available to be given to parents on their child’s discharge from hospital. It will provide essential information and advice, signpost further help and reading, log follow-up appointments and doctor’s details and give a valuable and very personal record of any changes to their child’s health or wellbeing.
Dr Alistair Thomson, 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.”
A first for meningitis victims in the UK, there is currently no one piece of literature that encompasses such a wide view on life after meningitis. The Trust found that instead parents are making their own journals for their children to take to doctors’ appointments and into schools.