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Photo of our current CEO, Nick Moberly, at home, working in his garden looking pensive with a slight smile.

Making the MS Society more diverse and inclusive

Nick Moberly

We’ve launched a new strategy setting out our commitment to equality and how we’re planning to be a more diverse and inclusive organisation. Our Chief Executive Nick talks us through the plans.

Over the last year we’ve spoken to hundreds of people across the MS Society and the MS community on issues around equality, diversity and inclusion (or EDI). We wanted to hear how you think we’re doing and we listened to ideas for how we could create a more inclusive organisation. Most importantly, we needed to understand what it will take to change.

The findings from those focus groups, meetings and interviews all contributed to our new strategy.

In the strategy, we set out plans for the next three years.

Slow progress

Up until now we’ve made some progress on EDI, but it’s been slow.

We’ve carried out new research to deepen our understanding of different groups of people within the MS community. We’ve celebrated awareness events and activities like Pride marches and Black History Month. Among staff, we’ve established a group of EDI champions who’ve worked with people with MS to coproduce plans for the future. We’ve trained managers to be aware of unconscious bias in our recruitment and management decisions and increased diversity on our Board of Trustees.

But, if we’re being really honest, it was events in 2020 that really woke us up to the need to go much further and faster. It made us realise we need to do more of what we’re doing, and quicker. It shouldn’t have taken any outside prompting for us to up our game in this area. We’re sorry that’s what it took.

Lacking diverse representation

In developing the strategy we’ve learned more about the communities we seek to support.

We know some people with MS from minoritised groups can have higher levels of disability earlier in life, but don’t have good access to healthcare. We also know that research into MS in people from ethnic minority groups has not kept up with our changing understanding of its prevalence. One study from the US suggests that, against what many believe, Black women may be at higher risk of MS than White women.

Read more in our response to the Sewell Report

We know that there are reasons why some people affected by MS have a more difficult journey. We’ve spoken a lot in our campaigns about healthcare and service provision being a postcode lottery. We also know that if someone has less access to funding or fewer groups of friends and family who can support them, then living with MS feels more difficult. Those kinds of differences affect people regardless of ethnicity, gender, disability or belief. But what we haven’t spoken about as often is when your ethnicity, gender, disability or beliefs are factors that affect your MS journey in themselves.

Learning about ourselves

We also learned more about ourselves.

People in our MS community who aren’t already engaged with us told us we lack diverse representation.  Volunteers who are under-represented (younger people and people from minoritised backgrounds) told us we can be marginalising. Some volunteers told us they have sadly experienced behaviours that have made them feel excluded, or had received ageist and/or racist comments.

We need to do more to fight against this. That is what prompted me to personally sign up to the Assocation of Chief Executives of Voluntary Organisation’s principles to address diversity in charity leadership. We know we need to keep listening. Through our research we don’t think we’ve uncovered widespread active discrimination but the evidence we’ve found doesn’t necessarily represent everyone’s experiences.

Valuing everyone as an individual

Promoting and supporting equality, diversity and inclusion is about valuing everyone as an individual.

At the MS Society, we’ll build a more inclusive culture, making sure both our volunteers and colleagues represent our MS community and wider society. Everyone should feel included, and feel empowered to do their role while being themselves.

Making it all happen

We’ve got big plans between now and 2024. We’ll be rolling out training to staff, doing more research and evidence work around inequality, and reaching out to more people with MS and building new ways for them to connect with each other. We will publish regular updates from early in 2022.

We also need to focus on building trust, listening to and learning from others, using research and data to further our understanding and giving this work the resource it needs. We want to be there for everyone affected by MS. And until we are, we are not going to fulfil our core mission of a world free from the effects of MS. 

To find out more about what we’re planning around EDI, you can explore our strategy and implementation plan.

Help us deliver our strategy

We're looking for people to join our EDI Reference Group. Drop us an email to find out more.

Find out more about our EDI Reference Group