97% of viral meningitis victims suffer after-effects, UK

10 January 2013

Source: Meningitis Trust

A survey commissioned by the Meningitis Trust (a CoMO member) has shown that viral meningitis , a disease which is estimated to affect over 5,000 people a year is leaving 97% of its victims with debilitating after-effects.

Often compared with bacterial meningitis, as a 'milder strain' with a short recovery period, viral meningitis is leaving its victims with exhaustion, headaches, memory loss, depression, anxiety and hearing difficulties. Many sufferers have to take long periods off education or work and struggle with day-to-day tasks that so many people take for granted.

The results showed that more than 40% of victims did not receive any information on the disease and only one in three (of all respondents) were offered a follow up hospital appointment.

“Too often we hear people say that they were made to feel less important because they 'only' had viral meningitis. Our study shows that victims are suffering with their after-effects long after their experience, confirming what we've always believed – that viral meningitis is not always a 'mild' disease,” said Meningitis Trust Chief Executive Sue Davie.

UK resident Tamily Butterton, 33, contracted viral meningitis in 2011 and was discharged after three days in hospital, when she was still in pain.

“Meningitis left me with ongoing pain. I didn't understand what was happening to me and felt as though no-one was listening. I was desperate for help and reassurance that I'd get better, so I went online and came across the Meningitis Trust. They had a nurse-led helpline, which became my lifeline for months. I felt relieved that there were experts who knew what I was experiencing. They understood and listened,” said Tamily.

Viral meningitis is an infection that causes inflammation of the membranes that surround the brain and the spinal cord. These membranes are called the meninges – they help protect the brain from injury and infection. Viral meningitis is more common than bacterial meningitis, but is rarely life-threatening.

The survey was completed by over 450 victims of viral meningitis between July and September 2012 on The Meningitis Trust website. It was conducted by the Picker Institute Europe, a not-for-profit organisation that makes patients' views count in healthcare, on behalf of the Trust.

Read the results from the survey.

The Meningitis Trust  is a CoMO member.