UK: New Resources Will Improve the Lives of Meningitis Sufferers
25 June 2013
New resources that will improve the lives of thousands of young meningitis sufferers have been launched by national charities Meningitis Now and Meningitis Research Foundation in time for the peak season for the disease, starting this autumn.
The charities estimate that on average there have been over 2,100 cases of bacterial meningitis and septicaemia in children every year over the past decade. This represents more than 60% of all cases in the UK.1 The disease can strike at any time and kill within hours.
Your Guide: Recovering from childhood bacterial meningitis and septicaemia, which provides information about recovery, potential after effects, follow-up care and the support that is available, is designed to be used alongside My Journal: Life after childhood meningitis and septicaemia. The journal enables parents to keep a very personal record of their child’s illness, recovery and follow-up appointments.
The guide and journal, a first for meningitis victims in the UK, will also 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.
The new resources have been endorsed by the Royal College of Paediatrics and Child Health, the Royal College of General Practitioners and the Royal College of Nursing.
Chris Head, Chief Executive of Meningitis Research Foundation, and Sue Davie, Chief Executive of Meningitis Now, said: “Parents are often unsure what to expect after meningitis and septicaemia, and they tell us that discharge from hospital can be an anxious time because doctors and nurses are no longer on hand to answer questions.
“Many parents leave hospital unaware of the true impact that the disease may have on their child’s long-term health and unsure of where to turn. We hope that reading these resources will help ease anxiety for families at such a difficult time and empower parents to seek help for their child whenever it is needed.”
Dr Andrew Long, Vice President for Education at The Royal College of Paediatrics and Child Health, said: “More than 500,000 people in the UK have contracted viral or bacterial meningitis or meningococcal septicaemia and one in seven of those who survive will be left with a permanent disability such as deafness, brain damage or loss of limbs.
“Leaving the hospital and the watchful eye of medical staff can be a daunting prospect for families so these pioneering new resources will provide those coming to terms with their child’s diagnosis, with much needed reassurance, support and guidance."
A focus group with experience of the disease worked with the charities on the development of the resources. One of its members, Angela Cloke, from Warwickshire, whose son Sam had meningitis at 18 months, said: “I wish we had had these resources available when Sam was recovering from meningitis – they would have been so helpful to us as a family and in our contacts with Sam’s doctors once he left hospital. It’s so important that you know about the impact the disease can have and the range of possible after-effects, so that you not only understand what is happening but can also make sure you get the right support.”
Claire Stanbridge, from St Leonards on Sea, whose son Leon contracted pneumococcal meningitis at 7 months old, said: “We were told as parents that the swelling to his brain caused by the disease may result in him not being able to walk, talk, hear or see properly and all this would affect his future quality of life. We only started to realise the uphill battle that we would face once we had been discharged from hospital – hearing and sight tests, physiotherapy, occupational therapy, check ups at the hospital. These appointments continued until he was about 4 years old. This resource would have been an incredibly useful resource for us with all the hospitals visits and appointments we had and would have given us useful guidance on what follow ups he should have been getting and possible after effects.”
To request a copy of the free resources or download additional pages free of charge contact:
Meningitis Research Foundation
080 8800 3344
0808 80 10 388
Source: Health News