UK first will improve life for child meningitis victims
17 June 2013
New resources that will improve the lives of thousands of young meningitis sufferers have been launched by national charities Meningitis Research Foundation and the Meningitis Trust 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 survivors in the UK, will also enable the delivery of a new Quality Standard measure from the National Institute for Health and Care Excellence (NICE), ensuring that children affected 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 Trust/Meningitis UK, 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 Alistair Thomson, Vice President for Education and Project Lead at the Royal College of Paediatrics and Child Health, said: “It’s estimated that more than 500,000 people in the UK have contracted meningitis or meningococcal septicaemia and as many as one in seven of those who survive can 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, 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 contact:
Meningitis Research Foundation 080 8800 3344/ www.meningitis.org/recovery
Meningitis Trust 0808 80 10 388/ www.meningitis-trust.org
1. Meningitis Research Foundation website. UK Facts and Figures. Available at www.meningitis.org/facts/
For further information please contact: Andy Hopkinson at the Meningitis Trust on 01453 768006 or email firstname.lastname@example.org or Becky Pierce-Jones at Meningitis Research Foundation on 01454 280416 or email email@example.com About meningitis
Meningitis is inflammation of the membranes that surround and protect the brain and spinal cord. It can strike quickly and kill within hours ¬– its impact can last a lifetime. Each year in the UK there are about 3,400 new cases of bacterial meningitis and up to 500,000 people in the UK have had meningitis. It can affect anyone, but those most at risk are children under 5, young people (15 to 24) and adults over 55.About Meningitis Research Foundation
Meningitis Research Foundation has a vision for a world free from meningitis and septicaemia. We have spent over £16.5 million on research projects into the prevention, detection and treatment of the diseases. We also spend around £1m annually supporting those affected, raising public awareness and working with health professionals.
Our Freefone helpline – 080 8800 3344 – is operated by trained staff and available 365 days. It provides information to the general public and health professionals and can handle queries in 150 languages. We also have extensive information, research insights and case studies on our website www.meningitis.org About Meningitis Trust and Meningitis UK
The Meningitis Trust started in 1986 and, since then, has supported people as they face life after meningitis. It provides the widest range of free services and community-based support for people affected by meningitis across the UK, and raises awareness of the disease and funds research into its long-term impact. The Trust merged with Meningitis UK at the beginning of April 2013 to provide an even louder voice and more strength to beat meningitis. The combined charity forms the UK’s biggest meningitis charity and brings together expertise in research and prevention with established support services and after-care.
For more information visit the website www.meningitis-trust.org, call the Freephone helpline on 0808 80 10 388 or download a free app at www.meningitisapp.co.uk