Report reveals shortfall in care for meningitis sufferers
02 June 2010
Today Meningitis Research Foundation (MRF) has released a report that shows that people who get meningitis and septicaemia are not getting the urgent medical attention they need.
The Impact of Meningitis Study collected data from more than 800 MRF members about their experiences of meningitis and septicaemia from their early symptoms through to their aftercare. More than half were sent home after their first visit to the GP, showing how difficult it is to recognise meningitis and septicaemia in the early stages.
“The initial symptoms of meningitis and septicaemia can be like flu and other mild illnesses, making early diagnosis difficult, but the fact that half of cases were missed the first time they sought help from their doctor reinforces the need for MRF to raise awareness of the early, red-flag symptoms, amongst the public and health professionals,” said Meningitis Research Foundation Chief Executive, Christopher Head.
The report goes on to look at aftercare, and identified many problems with access, including provision of an immediate hearing test. Of the 716 people with bacterial meningitis, 25% had no hearing test and of those who did, only 32% remember having a test before or up to one month after discharge. It is well documented* that patients recovering from bacterial meningitis need an urgent hearing assessment. That way, anyone with hearing loss severe enough to need cochlear implants can be referred for surgery before it is too late, since meningitis causes overgrowth of bone in the inner ear, making successful implantation impossible.
As Christopher Head explains: “The report shows that there is no established patient journey for people who survive meningitis, and many members struggled to get the therapy they needed. This can slow recovery and limit the success of rehabilitation.”
Having analysed the results from the Impact of Meningitis study, MRF identified the need for a Disability Rights and Benefits resource which will help people who have had meningitis or septicaemia to navigate both the medical and benefits systems. Available on the website at http://www.meningitis.org/helping-you/drb, the resource has been developed with the help of members and advice agencies and provides information about financial, medical and educational support.
“We hope this will help people dealing with the aftermath of meningitis. For families bringing home a disabled child from hospital, learning to negotiate complex health and social care systems to get the help and support they need is very challenging. The Disability Rights and Benefits resource will show people what they are entitled to, where to go to get it, and hopefully this will mean that the necessary help is sought swiftly making the recovery process quicker and easier,” said Christopher Head.
If you are concerned simply call MRF’s Freefone 24-hour helpline – 080 8800 3344. Trained staff and nurses are on-hand to talk through any aspect of the diseases – from information on recognising the symptoms, to befriending for those whose lives have been affected by meningitis. We also provide free symptoms cards and leaflets for homes, school and places of work, which can be ordered through the helpline or here
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Media Contact:
Camilla Bond (Meningitis Research Foundation) 01454 280406 or 07711 057875 camillab@meningitis.org
Notes to Editor:
• A full copy of the Impact of Meningitis report can be found at www.meningitis.org/impact-of-meningitis
• A full copy of the Disability Rights & Benefits resource can be found at www.meningitis.org/helping-you/drb
• Meningitis Research Foundation estimates that meningitis and septicaemia affect about 3500 families in the UK and Ireland every year. These diseases kill approximately one in ten of those affected, and approximately a quarter of survivors have after effects that affect their quality of life.
• Meningitis Research Foundation is currently funding 25 research projects into the prevention, detection and treatment of meningitis and septicaemia. The Foundation has spent £16.2 million on research since its inception in 1989.
• Meningitis Research Foundation operates a Freefone 24 hour helpline – 080 8800 3344 – providing information on meningitis and septicaemia to the general public and health professionals.
• Information on meningitis and septicaemia is also available on the Foundation’s world-renowned website – www.meningitis.org – in 22 languages. An interpretation service in 150 languages is available through the 24-hour helpline.
• The Foundation offers support for those affected by meningitis and septicaemia. Trained helpline staff are available 365 days a year. A befriender service links people with experience of meningitis and septicaemia to share their experiences and counsel each other.