CoMO and its members understand that meningitis is a traumatic experience for survivors and families.
As well as the potential for loss of life or acquisition of lifelong impairments such as brain damage or limb loss, even those less affected are often left with behavioural, emotional and educational problems. All of this creates a societal cost in addition to the personal cost to individuals, their support networks and bereaved families.
Research projects in the UK and France have been undertaken to understand the long-term cost of meningitis.
Country based research
The UK's Meningitis Research Foundation (MRF) recently uncovered the shocking lifelong costs to UK residents surviving meningitis and septicaemia through their Counting the Cost project. Results showed that it costs the UK government between £3-4.5 million to care for severe cases over their lifetime. The project fronted a major campaign that generated a petition of nearly 17,000 signatures calling on the UK government to pursue the widest and earliest implementation of vaccines to prevent the diseases. Results from the study have been also been published in a peer reviewed journal.
As an extension of work undertaken in the UK, the MRF have been helping some European colleagues to undertake a similar exercise. A study carried out with Association Audrey in France has recently revealed that the cost of caring for survivors with severe disability such as amputations or brain damage over a lifetime can range from 3.4 to 4.6 million Euros, the majority that is paid for by National Health Insurance and publicly funded organisations. This figure is in line with findings from the UK study. The findings of this study will be used by Association Audrey to raise awareness of this disease and its devastating consequences.
This is a start! More needs to be done to understand the true cost of meningitis to families and documenting the cost will add great strength to advocacy efforts worldwide.
CoMO’s Scientific Advisory Group will commission international research on the long-term physical, intellectual and emotional costs of bacterial meningitis, as well as the societal costs to survivors and their families.
Stage 1 of the research began in 2013/14.
For more information:
Meningitis Research Foundation Ireland, recently conducted a survey (supported by Novartis Vaccines and Diagnostics) to explore the knowledge and attitudes of parents of young children and health professionals towards meningitis and vaccination.
The results of this research will help target awareness campaigns and is particularly timely in advance of any changes to the vaccination schedule to accommodate new vaccines (E.g. meningococcal B).
For more information please contact Meningitis Research Foundation representative Caroline O'Connor.