The UK government’s Commission on Race and Ethnic Disparities published their report into racial and ethnic disparities in the UK on 31 March 2021. It’s commonly known as the Sewell report after the chair of the Commission, Tony Sewell.
We’ve reviewed the report and followed the wider debate around it. We do not agree with the main conclusion of the report. And today we’d like to assure everyone in our MS community that we will continue our work based on the clear evidence that some people with MS are affected by systemic racism.
Health inequalities for people with MS from minoritised ethnic backgrounds
We know some people with MS from minoritised ethnic backgrounds can have higher levels of disability earlier in life, yet have lower access to healthcare. We also know that research into multiple sclerosis in people with minoritised ethnic backgrounds has not kept pace with our changing understanding of its prevalence.
One study from the United States suggests that, contrary to what many believe, Black women may be at higher risk of MS than White women.
While some of the MS-specific research is from the United States, evidence like the Marmot report shows similar inequalities exist in the UK.
Structural racism in the UK
This state of affairs is simply unacceptable. And we believe a major reason for it is structural racism in the UK.
Structural racism is where things like government policies, the education system and working culture continue to create inequalities in society based on a person’s ethnic background. We are not alone in this view. A wide range of experts agree, including leading clinicians writing in the British Medical Journal (BMJ).
People with MS are experts by experience
“Words like isolating, under represented and ignored comes to mind.
For me being a person of colour has had a big impact on my MS journey and diagnosis overall.” - Roxanne
Behind each of the facts quoted above are real people and their stories. Our community tells the story better than we ever could.
Our work to support everyone with MS
At the MS Society we want to be there for everyone affected by MS. We know that means constant activity to combat systemic racism and conscious and unconscious bias – in ourselves and others.
In recent years we've made some progress in
- reforming our recruitment practices
- expanding our research into experiences of different groups of people affected by MS
- building a more inclusive culture
Listening to people we’re not including
We know we have far more to do. Earlier this year we asked the diversity and inclusion specialists Diverse Matters to facilitate conversations with our community to help us develop a new strategy for putting equality, diversity and inclusion at the heart of what we do.
We set up a series of focus groups and one-to-one conversations with people who have not always been included in our work in the past, especially:
- people with Black, Asian or minoritised ethnic heritage
- younger people aged 18-40 with and without MS
- people with advanced MS
We had some amazing conversations with everyone who took part and we now have some really rich insights into what we need to do to be more inclusive. We'll be publishing more information about the findings soon - so watch this space to find out more.
We want to hear from everyone in our community
We'd love to hear from everyone in the MS community about your thoughts, ideas and experiences involving equality, diversity and inclusion.
If you have suggestions for us that’s great, but please feel free to share your experiences regardless. It’s not on people affected by systemic racism to come up with all the answers, it’s on all of us.
If you’d like to be involved and help shape our future approach we’d love to hear from you – you can get in touch at [email protected]
We stand with UK charities against racism
We stand with all UK charities in exercising their right to voice their full opinions about this report. And in fact about any issues that affect the people they represent.
Some people have criticised charities recently for not being “impartial”, saying that where different political parties have opposing opinions on an issue, charities should avoid speaking about it.
We think charities have a duty to speak up against injustice wherever they see it, regardless of whether someone has labelled an issue “political”.
- Study showing people with MS from minoritised ethnic backgrounds can have higher levels of disability earlier in life on the Pub Med website
- Study showing people with MS from minoritised ethnic backgrounds have lower access to healthcare on the Pub Med website
- Overview of research into multiple sclerosis in people from minoritised ethnic backgrounds on the Practical Neurology website
- Study from the United States suggesting that Black women may be at higher risk of MS than White women on the Pub Med website
- Health Equity in England: The Marmot Review 10 Years On (Marmot report) on the Health Foundation website
- Read Sir Michael Marmot’s Guardian article about how the Sewell report misrepresented his work