Updated: Jul 21
28 March 2019
Written by Sam Nye
Last month I attended a meeting at Wilton Park with meningitis experts from around the world to discuss how we go about Defeating Meningitis by 2030. It was truly inspiring to be surrounded by so many people all working towards the same goals.
It was the second taskforce meeting since the concept first emerged in May 2017, when one of our members, the Meningitis Research Foundation (MRF), in collaboration with the World Health Organisation (WHO), brought experts together to talk about a global vision of a world without meningitis. Since that time it’s gone from a concept boldly presented by MRF to an initiative launched by the WHO.
This was the first of these meetings I had attended and I couldn’t believe how much interest there was from the whole room in the involvement of patient groups and aftercare, I just hadn’t expected it and it was wonderful! It was quite unlike other meetings I have attended where there is a very definite focus on epidemiology and diagnosis, which are of course absolutely essential but don’t take in the whole picture.
We discussed the key areas of the Roadmap: prevention and epidemic control; diagnosis and treatment; surveillance; information and advocacy; and support and aftercare for people and families affected. It was an opportunity for experts from all different fields to weigh in with any gaps they’d spotted or areas that could be improved on.
I gave a presentation about CoMO’s members, to shed some light on the resources they’re working with in different parts of the world and how they’re essential to advocacy efforts. It was brilliant to hear questions about why more groups aren’t set up in countries with the highest burden and how groups could be better supported to do more of what they do and it made me feel extremely positive for the future of the Roadmap for CoMO, it’s members and by extension, people all over the world!
I’m now eagerly awaiting the next stage of consultations, which will go out for a public consultation in May and a formal web consultation in June-July. I know many CoMO members are eagerly awaiting to have their say about what the future of meningitis should look like and the impact we can have as a collective.
From left: Sam Nye, CoMO; Rob Dawson, MRF; Linda Glennie, MRF; and Jane Plumb, GBSS
I'm the Executive Director at CoMO and I've been with the charity since 2015. I'm honored to represent our members around the world and since working for CoMO I've learnt the true power of the patient voice and collaboration.