MS charities – beyond the pale

M

UK MS charities say they represent all people with the disease.

But how can they – with so little ethnic and racial diversity at the top?

Take a look:

“Representation is important,” says Dr Sharmilee Gnanapavan, consultant neurologist at Barts Health NHS Trust. “When people don’t see this, they’ll likely bypass it.”

And that representation – judging from the photos and bios of the above – is Caucasian, middle-aged, with higher-than-average household income and education. This would be ideal if the 130,000 plus people with MS in the country were all like this, but they aren’t. 

And yes, I know I’m hardly the best person to write this article – but I think it’s worth starting somewhere.

Take race. MS was traditionally seen as a “white person’s disease.” While it is still more common in Caucasian, studies show south Asian and Afro-Caribbean people born in high-risk countries – like the UK – have the same risk of developing MS as the native population.

As for data on MS prevalence and incidence in different ethnic groups across the UK, no-one knows for sure, as GP data sets are not reliable, according to Ruth Dobson, consultant neurologist at Barts Health NHS Trust.

But wait, I can hear some of you say. Does it matter – to put it crudely – what colour someone is?

I believe it does. In the past year, the Black Lives Matter movement and the Covid-19 pandemic has exposed the disproportionate racial and health inequalities faced by Black, Asian and minority ethnic (BAME).

On a smaller scale, research has consistently shown how a non-diverse leadership – some call it institutional racism – has a negative impact on organisations.

For one thing, it leads to group-think. “The decisions you make are influenced by your background and if everyone is drawn from the same one, there are no dissenting voices. The group becomes unconsciously myopic,” says Dobson.

It also means a dominant body makes all the decisions on the charity’s direction, strategy and distribution of grants and services.  Specialised needs are overlooked in favour of a “one size fits all” approach. 

This is hardly ideal when it comes to MS. Recent studies have revealed unique differences in how the disease impacts minority groups. For example, we know Black people with MS are more likely to have a faster, more disabling disease course and are more prone to visual and walking problems (time to cane 6-10 years faster vs their white counterparts).

Third, if a board isn’t diverse, it risks a disconnect between itself and the community it claims to serve. People not represented feel they are not welcome, belong or valued.

Nobody is more aware of this than Jamaica-born Norma MacFarlane, founder of the Shane Project – the only charity in the UK providing support, empowerment and education to Afro-Caribbean and ethnic minority people with MS. 

MacFarlane set up the charity in 2002 after both her UK-born sons were diagnosed with MS: one has relapse-remitting MS while her eldest, Shane, was diagnosed with primary progressive MS, in 1993. He has since passed away.

For years, she tried to get involved in the MS community except: “I would go into meetings and feel left out.” So she decided to set up her own charity where everyone would be welcome. 

MacFarlane still keeps up her MS Society membership, but thinks the charity leadership could work more at being more inclusive.

This is something Rahat Mahmood, 38 and who has MS, strongly agrees with. She would also like to see a mix of people – including those from South Asia – at the heart of the charities.

She believes this would raise awareness of the disease among UK South Asians – while helping to dispel the prejudice and stigma surrounding it. “People in my community – India and Pakistan – think if you have MS, it’s because your parents have done something wrong or they think “God is paying you back.”

She knows there’s an Asian MS group under the umbrella of the MS Society, that offers information in different languages and produces a quarterly newsletter, but says this isn’t enough. “We need to be involved in making decisions.”

For Kadra Abdinasir, organiser at the campaign group #CharitySoWhite, this is all too familiar. She points to a 2017 Charity Commission report showing 92% of trustees on charity boards and 95% of charity chief executives in the UK are white.

“For years, the charity sector has hidden behind good intentions,” she says. This must change, she believes, and it starts with the top leadership having conversations – no matter how uncomfortable – about power and privilege. 

Abdinasir would like to see charities putting as much emphasis on ‘lived’ experience as professional expertise when it comes to choosing trustees. This means seeking out people of colour; LGBT+ people and those who have experienced financial hardship or are on disability benefits.

To be fair, both the MS Society and the MS Trust have acknowledged they need to do more when it comes to equality, diversity and inclusivity (EDI) at their organisations. The MS Trust has been carrying out workshops and training on EDI and changed their recruitment process to attract more diversity.

As for the MS Society, in December it members chose three new trustees – including two from BAME backgrounds. The charity also says it is aiming to build stronger relationships in the MS community and also are putting together a new EDI strategy, according to Philip Anderson, Head of Policy and Equality, Diversity and Inclusion (EDI) Lead at the MS Society. 

This is all welcome news. A more diverse charity is a more successful one. Everyone wins. 

About the author

Rachel Horne

29 comments

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  • To be fair though, we don’t know if some of these trustees have BAME partners and children. So they might have some lived experience through these.

    • That is a good point. However I do think it is miles better to just have someone at the table from the BAME community.

  • I think you might have opened a can of worms.

    How many people at the top end of the hierarchy of the big MS Societies actually have MS?

    I was responsible for prodding the MS society to introduce the 1 Km walk ( https://multiple-sclerosis-research.org/2017/09/guestpost-taking-the-ms-society-to-task-2/)

    I also get annoyed that the MS Society does not offer any reward to people who help the MS Society with research. These are volunteers’, many people with MS suddenly need money to live. the UK benefits system does not pay a living wage if you have any assetsI am sure the MS Society is not the only guilty party. I assist Universities with interviews and talk about the lived experience and receive a small amount, up to £100 for a full day.

    Diversity is one of the issues that needs to be addressed but it is not the only one. Evidence needs to be provided that MS charities are addressing the whole range of diversity and inclusion issues above and beyond what has been mentioned here. I suspect the problems exists with other charities as well

    • Thanks for raising these issues, Patrick. And yes – I remember the walk!
      According to the MS Society website, out of the 12 MS Society trustees – five have MS. At the MS Trust, three trustees have MS – and one additional trustee was diagnosed with clinically isolated syndrome. Can not answer for the executive leadership.

    • I love the idea of a 1K walk or 500m. Let participants wear leg braces to mimic spasticity and maybe inject novocaine into the soles of their feet for loss of sensation (just kidding :-)). Regarding diversity, ideally every society should reflect the population they serve.

    • It is called “being woke” or “wokeness”.

      Woke (/ˈwoʊk/ WOHK) is a term that originated in the United States, referring to a perceived awareness of issues that concern social justice and racial justice. It derives from the African-American Vernacular English expression stay woke, whose grammatical aspect refers to a continuing awareness of these issues.

    • This is interesting to read as it was this very blog I discovered by reading a post on here called ‘‘no patient should be left behind’ back last June which mentioned the issue of BAME patients and their care etc but sadly all the evidence provided was based on income and socio-economic rating and not on ethnicity.
      I queried it a few times and I never got an answer as to why it was assumed income was related to race and if not why was that was what was presented and given in detail yet when asking for results from the studies claimed to have been done was just told ‘we’ve done the research’.

      • The “no patient should be left behind” slogan is the remit for our MS Academy Raising-the-Bar initiative, i.e. addressing variance/inequalities in MS services across the UK. Unfortunately, being from a BAME background is one of the social determinants of health that may play out in MS in terms of access to treatments, outcomes, etc. Please note I say ‘may’ as we don’t have enough hard data on this in terms of MS care to make the claim like in other disease areas.

  • If you have MS or are affected by this disease then you are part of the MS community. MS doesn’t discriminate based on your skin color or ethnicity. These charities should be color blind also. Let’s focus on better treatments and curing MS.

  • A thoughtful piece!
    I also wonder if the problem is already exacerbated at Executive level by the rise of the so-called ‘Charity Pros’.
    Better salaries and so the involvement of the recruitment industry, seem to have created a group of people who are almost routinely circulating between the top jobs in Charity Healthcare. It’s becoming shallow talent pool.

    As Patrick says promoting ‘Lived Experience’ and Rachel genuinely diverse reresentation might bring a sharper focus and better engagement for all people with MS?

    • That is bang on the money, Christine. Increasingly the charitable sector more and more resembles the boardrooms of big business, with the same old faces flitting from one 3 year stint to the next.

    • This is an excellent point Christine… and so very well said. I absolutely think some people at the top of the charity sector are incredibly hard working, committed and dedicated – but also there are some who are drawn by hopes of securing a gong at the end – the knighthoods, CBEs and OBE’s.

  • Can I make a suggestion?

    Will people with MS and that includes people of colour with MS let me know what they want from their MS charities, i.e. what the primary role of the MS Society and MS Trust should be and hence their primary objective? We can then work backwards. Thanks.

    • https://www.mssociety.org.uk/sites/default/files/2020-11/MS-Society-Research-Strategy-2018-2022_0.pdf

      In addition, our research priorities are determined by people affected by MS and health care professionals and are incorporated into our organisational goals. In 2012 we completed a James Lind Alliance Priority Setting Partnership, identifying our top 10 research priorities. Our research programme has since focussed on these priorities outlined below and will continue to do so.

      Not involved, but discovered about the James Lind Aliance while educating myself on health research through Future Learn cources then tracked it back to how the MS Society decided on its priorities.

      I would suggest that a proper process is more likely to capture the views of pwMS rather than a straw poll here. Perhaps a suitable topic for using the MS Register? Though this could be viewed as a self selecting subset of pwMS who are interested, willing and able to answer questions.

  • Bit harsh on the MS Society in particular whose BAME representation if we are counting numbers in its trustees at 2 out of 12 is actually a more favourable % than the steering committee of the MS academy raising the bar initiative I think.

    • I hear you… a bit of background. When I first started researching this piece – a few weeks ago -the MS Society on their website had all their trustees listed – and none were BAME. A few days before the piece went up – I checked with the MS Society to make sure it was accurate. They then let me know the members had chosen – in December – three new trustees (two BAME) – which is great news – and shows there new recruitment policy for trustees is working. Thanks re bringing up MS Academy… there are also other places linked to MS the same.

  • “For example, we know Black people with MS are more likely to have a faster, more disabling disease course and are more prone to visual and walking problems (time to cane 6-10 years faster vs their white counterparts).”

    Yet we don’t know much about MS in Asian people, while their disease course look somewhat different (higher spinal cord involvement and % of -ve OCB) to Caucasians and black people.

    • You absolutely hit the nail on the head – so thank you. The problem is – as you know – is that there are so few studies showing the impact of MS on Asians (in the UK and Asia) – and that the existing studies only look at small cohorts. To find out more, I spoke to Dr. Sonia Kumari, a neurology research fellow, who is looking into the pathogenesis of MS in Asian and Afro-Caribbean in the UK – under the direction of Dr. Gordon Mazibrada – a consultant neurologist at the Queen Elizabeth Hospital in Birmingham. Here is an outline of the study: https://www.hra.nhs.uk/planning-and-improving-research/application-summaries/research-summaries/ms-in-asian-and-afro-caribbean-patients-in-the-uk/
      Caveats: the data is premilinary; it has not yet been published nor peer reviewed. Kumari has been looking at over 1,000 MS patients linked to Queen Elizabeth Hospital – Caucasians, Afro-Caribbeans and Asians – and has found differences between the three groups in: age at MS diagnosis, ratio of female/males with MS and percentage diagnosed with relapse-remitting MS and preliminary MS. It will be interesting to see what the blood samples reveal as well…
      I suspect (and any MS neuros out there – please feel free to jump in) the reason we know more about MS and its impact on Black populations – is that there have been more studies in the US where the Black population is higher vs UK. Also I think it would help if drug companies made sure they recruited from a diverse population for their MS clinical trials.
      I think it is a fascinating subject – and would love it to lead to more personalised medicine when it came to treating MS.

  • I looked up the reference and it does not seem to match the interpretation given in this blog.

    Results:
    The overall age-standardised prevalence of MS was 111 per 100,000 (152 for women and 70 for men), and 180, 74 and 29 for the White, Black and South Asian populations, respectively. The sex ratios (female:male) were 2.2:1, 2.1:1 and 2.8:1, respectively.

    Conclusion:
    MS prevalence was considerably lower among Black and South Asian populations, compared to the White population, by 59% and 84%, respectively. However, compared to available data in Africa and South Asia, MS is several times more prevalent among Black people and South Asians living in the United Kingdom than their territorial ancestry.

    The essence of research must be based on facts rather than prejudice. An interpretation could be it is being under diagnosed, but this would be a hypothesis to be tested. I have a hunch that MS is under diagnosed in the elderly and that a useful investigation would be to study late onset MS to identify reasons why they dodged the bullet longer than others.

    It is important that people of all sorts are encouraged to enrol for trials and initiatives such as the MS Register and the MS tissue bank so the studies can be representative.

    There are fractions of the White population who are disadvantaged and perhaps there are more useful ways of classifying patients other than the colour of their skin.

    • Hi,
      I used this reference – as it was the only study I could find that showed some hard numbers re- ethnic prevalence in MS. Unfortunately – as I pointed out – there is no reliable data on this in the UK – nor in the US. For example, when someone is admitted to a UK hospital they will be asked – but they do not have answer what ethnicity they belong to. https://www.hcup-us.ahrq.gov/datainnovations/raceethnicitytoolkit/ca6.pdf
      As for the MS Register, they have some data… but again as Rod Middleton, systems architect of the project, pointed out to me – it is again voluntary to state your ethnicity/race. Then there are UK GP data sets – which are not reliable.
      In your response, you mention there may be more useful ways of classifying patients “other than the colour of their skin” – what do you suggest?

      • My suggestion for a multivariate analysis of composition of decision making boards of all types would be private education, Russel Group University Education, Genetic Sex, your chosen measure of socioeconomic group for latest or last form of employment, your choice of ethnic origin.
        This could be compared with the numbers in the general population.

        For patients I suspect the education aspects and socioeconomic are not well known. If you are saying that there is not sufficient reliable ethnicity data, we are not going to get very far with classifying patients by the colour of their skin.

        I have heard reasons why certain groups find a diagnosis of MS to be shameful, which could lead to under reprecentation, but I expect this also applies to any group that has difficulty accessing health care.

        Amomalies can give rise to insights. For example why to people in certain communities live longer and what causes clusters of MS in certain families or communities.

        I found the statement that the age of arriving in the UK impacting the likelihood of developing MS fascinating, but given the difficulty in data gathering uncertain. Is EPV, less common in their countries of origin or are they lass likely to be defficient in vitamin D?

        Good data can lead to good questions. Hobby horses probab;ly not.

        I started reading the Blog for solid information and interesting concepts having tired of Facebook Groups with people giving anecdotal strongly argued opinion.

  • Thank you for this Rachel. Equality, diversity and inclusion are central to our values at the MS Society but, although there are many positive steps being taken, we agree we have a long way to go. Our staff, volunteers and wider community are working together to produce an ambitious new EDI strategy, and people can learn more about our plans on our website here: https://www.mssociety.org.uk/what-we-do/our-people/our-commitment-to-equality/edi-progress-report

    If anyone reading this would like to be involved and help shape our future approach we’d love to hear from you – you can get in touch at supportercare@mssociety.org.uk

  • I would like to offer a real life example of how board members with”higher than average real life income” does impact the types of decisions it will make. Up until 2019, the US National MS Society offered college scholarships to children of MSers with the stated objective of recognizing that The costs of living with MS make it more difficult to fund college tuition. The scholarships were relatively small, under $2k, but helpful to MS families like mine. Some might be surprised to hear that my spotty professional work history because of MS is Viewed by colleges and state university as a personal choice and my very humble savings as a resource to fund my child’s education. Despite documenting my MS, yearly medical expenses, and need to conserve savings, we were offered no financial assistance from our most affordable option : state university. Thankfully, some merit scholarships were granted, but our entire fund for my child’s tuition is used up for Freshman year. When I contacted the MS Society, I was told that the Board found the scholarships were not a priority because there were other resources available to children of MSers. No. No there isn’t. The Board somehow dismissed its scholarship objective. MS PT, MS meds, unpaid leave all have a high cost and it’s not calculated into a families ability to fund college, and this impacts families with “below average” AND “average” real life income. A relatively small college scholarship to children of MS families was not superfluous.

    • Really interesting to read this – so thanks for posting. I am not terribly familiar with the National MS Society – being UK based. I do know from a very quick look that the top leadership is not very diverse… in all ways.

  • The key challenge for the MS Society, the MS Trust plus the MS Register might be that they have become more and more detached from PwMS whilst PwMS, BAME or not, have become more informed about their disease and so more demanding of participation in and influence on policy and resources used on their behalf.

    The target has to be the top executive team in each charity.

    The goal embedding is pwMS in the policy making process via employment, promotion and value. It can’t just be done by PPI or public engagement, they have to be in the office and sitting at the top table. The policy has to start with a representative section of the patients not just be a sign-off.

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