Strengthening patient voices

Supporting meningitis patient groups in Denmark, Spain and the Netherlands

May 2018 – April 2021

Many of the major bacterial pathogens that cause meningitis also cause sepsis. They can occur together or separately and can be very difficult to distinguish. Together, meningitis and neonatal sepsis were the second biggest infectious killers of children under five globally in 2016.1 A strong patient voice is key to ensuring that meningitis and sepsis are given appropriate priority and attention within national and international health policy and spending.

Patient groups are organisations of patient representatives with experience of a particular disease or condition. They have the power to play a key role in defeating meningitis through informing and supporting people affected by the disease, advocating for increased access to meningitis vaccines, improving public awareness, and demanding health systems that better meet patients’ needs.

A strong patient voice is instrumental to creating a world that’s free from meningitis, however, many patient groups carry out their work with very limited resources, relying heavily on the work of volunteers.

1 Levels and Trends in Child Mortality Report 2017: United Nations Inter-agency Group for Child Mortality Estimation. New York, United Nations Children’s Fund (UNICEF): Figure 4, p. 11.

What we are doing:

In 2017 and 2018, MRF and the Confederation of Meningitis Organisations (CoMO) undertook mapping work and conducted a survey to strengthen our understanding of patient groups working on issues relevant to meningitis across the world. The key goals of this project were:   

  • Gain a clearer picture of where meningitis-related patient groups exist
  • Develop an understanding of the priorities, activities, successes, barriers, structure and networks of organisations that advocate on behalf of patients
  • Identify opportunities to enhance best practice sharing and collaboration

Based on survey responses from 44 patient groups, the key findings from this research were:

  • The average annual income is £105,049 - this figure is strongly influenced by a small number of large patient groups. 50% of respondents recorded income lower than £26,400.
  • 98% of groups engage in public awareness raising.
  • 63% of respondents cite funding as a barrier to achieving their aims.
  • 75% of respondents engage in public campaigning and 59% of respondents say they lobby governments.
  • 73% of respondents cite the funding environment as a specific barrier in their advocacy; 55% of respondents cite the political environment.
  • 63% of respondents state that they feel their organisation is able to engage and/or influence relevant decision making at a policy level.
  • The average (median) number of full or part-time staff employed was 0.
  • The average (median) number of volunteers employed was 10.

Informed by this research, the Strengthening Patient Voices Project is a collaboration between MRF and CoMO. We are capitalising on the experience and expertise of MRF and CoMO to support three patient groups in Spain, Denmark and the Netherlands to strengthen the effectiveness and impact of their advocacy and awareness activities, ensuring that their voices can be heard. Each participating group is being supported by MRF’s International Programmes team and CoMO to: identify and address capacity gaps; create or strengthen advocacy, awareness raising and fundraising strategies; and take advantage of opportunities to provide, and benefit from, peer support.

Project objectives

By participating in this project, patient groups will be better able to:

1 – Advocate for improved access to vaccines.
2 – Raise awareness of more people on the signs and symptoms of meningitis and sepsis and what to do if they recognise them.
3 – Influence health policy to make it more responsive to the needs to people affected by meningitis and sepsis.

Through implementation of this first round of the Strengthening Patient Voices Project, we will also develop of a model for capacity building that can be used to support more patient groups and civil society organisations in future.

Key Partner

Global

At the Confederation of Meningitis Organisations (CoMO) we are dedicated to preventing meningitis globally by ensuring families worldwide have access to early diagnosis, preventative measures and quick treatment.

Participating patient groups

Spain/España

We are delighted to have the support and endorsement of 2 patient groups as experienced as MRF and CoMO in the development of our strategic plan for growth in Spain.

We believe in a world free of meningitis and our objectives are:

* to improve the care and services available to Spanish survivors and those affected;

* raise awareness among the Spanish public about the disease;

* to increase our influence among national and regional public health authorities for the implementation of vaccination programs against all types of meningitis.
Denmark/Danmark

As a newly started organisation we are very excited and grateful to have been included in the Strengthening Patient Voices project.

By providing information to health professionals and the public and by working with the health service in advancing their research, we work towards a world where no one succumbs to meningitis.

Our participation in the Strengthening Patient Voices project provides us with an invaluable opportunity to establish a solid foundation with clear vision, mission, strategy, goals and advocacy plans that would otherwise be beyond our resources and abilities.
Netherlands/Nederland

The NMS is funded with the goal to eliminate meningitis.

As this aim is not realistic, because of various pathogenic that cause meningitis for which no vaccine will be developed, we have the following subgoals:

• Provision of information to people affected by meningitis/sepsis/encephalitis

• Stimulate contacts with fellow sufferers

• Raise awareness

• Advocacy

• Stimulating scientific research


Goal and subgoals applies to meningitis, sepsis and encephalitis

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.
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Chloe Day
Head of International Programmes

Hello, I'm Chloe,

If you'd like to know more about this project, get in touch

Tel: 0333 405 6277

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