Towards a meningitis free world--can we eliminate meningococcal meningitis?: contribution of the meningitis patient groups.

Patient groups play a critical part in the fight against meningitis in all its forms. The UK has the world's three largest meningitis patient groups, which over the past 3 decades have worked tirelessly in the fight against meningitis. Within the UK, where the patient groups work to prevent or alleviate the suffering caused by meningitis and septicaemia, their work is in three areas: continued research; demonstrating burden; and awareness-raising and advocacy. The research relates to developing and improving vaccines, and to improving outcomes for forms of meningitis that are not vaccine preventable. Demonstrating burden - showing the real impact of meningitis from a human perspective - highlights the need for vaccines to prevent the disease. Lives are saved by raising awareness of signs and symptoms and of the need for fast action, whilst advocacy can bring about change to improve the quality of life of those affected by meningitis. Awareness raising and advocacy also have the wider benefit of creating a climate in which people recognise the need for vaccines to prevent this dreadful disease. In addition, the patient groups seek to influence the early introduction and uptake of vaccines as they are licensed and approved by the expert bodies, the UK body being the Joint Committee for Vaccination and Immunisation (JCVI). Each area of activity is explored, and examples given from each of the patient groups of work they have done or are doing in that area.