In a major new study our members reveal the impact of meningitis and septicaemia on families

People who get from meningitis and septicaemia don’t live in isolation.

The rapid onset and sometimes devastating after effects can change the lives overnight of anyone with a loved one who has been affected.

We know quite a lot about how meningitis and septicaemia affect survivors, but what is the true scale of the impact on those close to them? Understanding this is key to informing decisions about access to treatment and prevention of meningitis and septicaemia.

Over 1000 of our members and their families are involved in a major new study, led by Hareth Al-Janabi (pictured), looking into the problem.

What is this project about?

University of Birmingham researcher Hareth Al-Janabi is working in collaboration with Meningitis Research Foundation on a Medical Research Council funded project to investigate the scope and scale of the impact of meningitis and septicaemia on family members of survivors.

Because a significant proportion of people who recover are left with major physical and psychological after-effects which affect a wide range of people close to them, this unique research project is vital to reveal the full impact of meningitis and septicaemia. It should help demonstrate that prevention and integrated support not only helps those who contract meningitis and septicaemia, but the health and well being of those close to them.

Our members are at the centre of this research and, so far, the response to the survey we have sent out with Hareth has been excellent. Crucial data has been collected on the health status of around 1600 family and household members of people affected by meningitis and septicaemia.

In around 1000 cases the person affected has significant physical or psychological after-effects from their illness. By studying the link between the severity of a person’s after-effects and the health status of those close to them, Hareth hopes to start building a picture of the extent to which meningitis and septicaemia impact upon the family members of the person that had the illness.

Why is this important?

Decisions about introducing vaccines rely, more than ever, on estimations of cost effectiveness. Cost effectiveness analysis considers the health and social care costs of an illness compared to the cost of the vaccine that would prevent it.

Typically, this analysis focuses solely on the costs associated with those who get the illness, rather than any wider societal impact. Recently, the Foundation has been campaigning for wider costs to be considered, a process which culminated in the presentation of a 17,000-name petition to the UK Government in September 2012.

The importance of this is illustrated by the government’s recent decision to introduce rotavirus vaccination. Formerly, the vaccine was considered too expensive, but including family costs changed the equation and, as a result, rotavirus immunisation will be introduced this year.

Potential outcomes

With the new MenB now licenced, a decision will soon need to be made about whether to include it in the routine childhood immunisation programme.

Hareth will be making the data from his project available to scientists working on the cost effectiveness models that will underpin this decision. As such, Meningitis Research Foundation members who have taken part in this project can feel proud that they have helped to inform this important stage of the process.

Later this year, we will work with Hareth to collect follow-up data from our members. This will be important in understanding how the health impact of these diseases might extend across the family network. Ultimately Hareth hopes this research will enable us to better understand the overall scope and scale of the impact of meningitis and septicaemia within the family, as well as contributing to our understanding of the cost-effectiveness of intervening to prevent and treat the disease.

Jo Lofting's son, Jack, has been severely affected

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