Strengthening Meningitis Patient Voices

The tools to help you advocate for change

Individuals and families directly affected by meningitis are the most passionate advocates. Their perspectives can impact healthcare decision making, improve meningitis survival rates and build better healthcare experiences.

At MRF, we are committed to ensuring that those affected by meningitis are at the heart of efforts to defeat the disease. We do this because those with first-hand experience can speak to the impact of diagnosis, treatment and after-care in a way that no one else can.

From 2018-21, we supported three members of the Confederation of Meningitis Organisations (CoMO) to develop their advocacy and awareness raising activities. This project, called Strengthening Patient Voices, included face-to-face workshops, individual mentoring, and a peer support programme.

Building on the project’s success, we want to support other health advocates, groups, and organisations to achieve their goals. Why? Because by working together as a unified voice we can call for the positive change needed to defeat meningitis. So, we’ve created a suite of free digital resources to provide you with the right tools to help advocate for change: -

  • Case studies: Advocacy for meningitis
    Celebrating best practice from across the globe

  • Guide: Using storytelling to drive health policy change
    Exploring how to capture and draw from personal testimony

  • Online training: Planning for Change
    Creating change is never easy, but this approach can help you to focus your efforts

Advocacy case studies

.Celebrating best practice from across the globe, these case studies capture stories of meningitis-related campaigning in different contexts – including Spain, Peru, the UK and US – sharing tips and approaches, celebrating and learning from success. Issues covered include campaigning for the MenB vaccine in France, raising awareness in Turkey and advocating for quality support and aftercare in Nigeria.

Access the case studies in:

Advocacy for meningitis

Using storytelling to drive health policy change

Personal stories can be a powerful tool in effective health advocacy. A story can help people better understand an experience that may be very different from their own, shifting attitudes and opinions in a way that facts and statistics rarely can.

This resource has everything you need to know about when and how to utilise personal stories in your advocacy work, from developing a simple storyboard to planning a social media campaign and tracking impact. Importantly, safeguarding best practice is also covered, because the most powerful story in the world is never worth pain or suffering to those who share their experiences.

Developed in collaboration with members of the CoMO network, Using storytelling to drive health policy change can help put the voices of patients and their families at the heart of successful campaigning.

Access the resource in:

Using storytelling to drive health policy change

Planning for change online training

In a constantly changing world, advocating for change is never easy. The Planning for change online training can help you to be prepared and focus your efforts. Our step-by-step approach has everything you need to take you from articulating the change you would like to see through to the resources, activities and progress milestones that will help you achieve it.

Often called a ‘Theory of Change’, this approach has everything health advocates, groups and organisations need to plan their work, evaluate their impact and report on achievements to funders and donors. The training includes examples from organisations around the world and allows learners to develop their own basic plan to download.

Access the resource in:

Planning for change

We take action that benefits people directly. including, training health professionals and providing support and information services.
Since the charity was founded in 1989, we have awarded 161 research grants. The total value of our investment in vital scientific research is over £19.1 million (€24.7 million).
We call for positive change as a united voice against meningitis and septicaemia, and a dedicated champion for those it affects.
The 'Strengthening Patient Voices' project was launched in 2018 between MRF and CoMO.