no patient should be left behind

n

As America burns and the #BlackLivesMatter campaign goes global and spreads to the UK people of colour have been asking white people to say something. The quote Megan Markle “….. the only wrong thing to say is to say nothing”.  At the same time, my eldest daughter is adamant that keyboard activism is wrong; “it easy to type and post something to social media”, she says “but it much is harder to something proactive and sincere”. As a secondary school teacher in a state comprehensive school in South London where a lot of her students have social problems and come from a BAME (black, Asian and minority ethnic) background, she has the moral high ground.

This discussion reminds me of a stinging criticism we at Barts-MS had from a person who was then working in a very senior position for one of the MS charities in the UK. She said that Barts-MS pandered to the rich, white, educated, middle-class person with MS, who came to our centre to get what they wanted and that we were neglecting our local population of patients who were much more needy. She claimed we had an unconscious bias against BAME (black, Asian and minority ethnic) patients with MS. This was a stinging attack on our MS service. 

I am acutely aware of unconscious bias in healthcare and her criticism hurt. For example, a very prestigious neurorehabilitation centre refused to publish an audit in the early naughties, which showed that people from upper-income groups (socioeconomic classes 1 & 2) were massively overrepresented in their unit compared to patients from lower socioeconomic classes. How and why unconscious biases creep into healthcare are well studied and understood, but to be accused of it yourself was sobering.

To counter the criticism against Barts-MS, which serves the most diverse population in London and arguably in the UK, we decided to do an audit of the patients on disease-modifying therapies in our centre. We argued that if we did have unconscious biases that favoured the well-educated and rich white middle classes they would more likely to be on higher efficacy DMTs than the less well educated, poorer local patients under our care. We felt somewhat vindicated when we showed that within our service socioeconomic class did not predict a person’s likelihood of being on any particular tier of DMT. In other words, if you get into our service regardless of who you are we will treat you the same. 

The exercise of doing this audit also triggered a deep desire in me to find out more about the social determinants of health (SDoH) and how they impact on MS outcomes. I have spent the better part of 5 years studying the SDoH, which has led to our #ThinkSocial campaign, our social capital research projects and for a SDoH workstream to be a part of our Raising-The-Bar initiative. Our motto is ‘no patient should be left behind’ and we mean it when we say it. 

In fact, I may have developed a conscious bias in favour of BAME patients with MS. As BAME patients with MS  have a worse prognosis they are often given a worse prognostic profile, which results in us steering them towards higher efficacy therapies. The patient I described yesterday, who I am now fast-tracking through diagnostic tests despite the COVID-19 restrictions on our service, is being driven by the fact that he comes from a BAME background. I am now questioning myself if this patient happened to be white would he be getting the same treatment approach from me? I sincerely hope so. 

Saúl Reyes et al. Socioeconomic Status and Disease-Modifying Therapy Prescribing Patterns in People With Multiple Sclerosis. Mult Scler Relat Disord. 2020 Feb 24;41:102024.

Aims: To examine the association between socioeconomic status (SES) and disease-modifying therapy (DMT) prescribing patterns in people with relapsing-remitting multiple sclerosis (pwRRMS).

Methods: A cross-sectional analysis was conducted among pwRRMS treated with a DMT in the neuroinflammation service at The Royal London Hospital (Barts Health NHS Trust). Study data were collected between July and September 2017. SES was determined by patient income and education extracted from the English Index of Multiple Deprivation. Based on their efficacy, DMTs were categorized as moderate efficacy (Glatiramer Acetate and Beta-Interferons), high efficacy (Cladribine, Fingolimod and Dimethyl Fumarate) and very-high efficacy therapies (Natalizumab and Alemtuzumab). Multinomial logistic regressions were performed for univariate and multivariate models to assess differences between SES and DMT prescribing patterns.

Results: Treatment consisted of moderate efficacy (n = 76, 12%), high efficacy (n = 325, 51.3%) and very-high efficacy therapies (n = 232, 36.7%). Medians for income and education deciles were 4 (IQR 3-7) and 6 (IQR 4-8), respectively. After multinomial logistic regression analysis, patient income was not associated with increased odds of being treated with high efficacy (OR, 0.92; 95% CI, 0.82-1.04; p = 0.177) or very-high efficacy DMTs (OR, 0.95; 95% CI, 0.85-1.06; p = 0.371). Similarly, patient education was not associated with being treated with high efficacy (OR, 0.91; 95% CI, 0.80-1.03; p = 0.139) or very-high efficacy therapies (OR, 0.92; 95% CI, 0.81-1.04; p = 0.188).

Conclusions: SES was not predictive of DMT prescribing patterns in pwRRMS. Whilst this appears reassuring within this universal health care setting, the same methodology needs to be applied to other MS services for comparison. Data could then be further interrogated to explore potential socioeconomic inequities in DMT prescribing patterns across the UK.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

31 comments

  • Doesn’t matter what race class..nation you come from if you have ppms..Oh sure Ocrevus is licensed doesn’t mean it’s effective.

    Honestly if you really were so worried about people given ineffective therapies…you should move to ban copaxone and betaseron…but you’re too much of
    a pharma tool and apologist…If you take away the ineffective therapies…patients have better chances.

    • Dear Anon
      Although I am not a neuro I think I am right when I say that on the whole we (BartsMS) simply do not use copaxone and betaseron. They are not banned as we respect choice, but we (the neuros) do not advocate their use. As you know I am not and never have been a fan of either of them. Perhaps in my COVID lockdown, I will find time to write a paper on the Emporers new clothes and the CRAB drugs and maybe will should publish our copaxone experiences and expose the animal drivel that the EAEers cling to.

      One year at MS life, a Dutch collegue gave their view of copaxone, I won’t repeat it….but it has stuck in my mind ever since. I am sure MD2 remembers the day too. Maybe that should be the title of the article I should write.

  • We live in a strange country – everyone seems to want to slag it off, but many living outside the country seem to want to come here to live! I wonder if we really are that bad. I watched a great programme a few years ago about an Indian woman who came to the UK in the 1960s. She had very little when she arrived but was grateful to come to the UK and said “I knew when I came here that I would be a cleaner, but I also knew that my son would have a chance to become a doctor” (which he did).

    Some interesting stats about the NHS:

    “senior doctors were more likely to be White or Asian (at 57.0% and 31.0%) than were junior doctors (at 53.0% and 28.7%)“

    So people from Asian heritage make up c. One third of senior and junior doctors which is much higher than their percentage in the U.K. population (under 10%). The Chair of the BMA Council is also of Indian heritage.

    My Asian friends speak very highly of the quality of the education here (private and state) and the work opportunities (medicine, law, starting up a business). They point out to me that the Chancellor, Home Secretary, Secretary of State for Business, Energy and Industrial Strategy, and Attorney General are all of Indian heritage.

    I have no doubt that there are many issues to address in British society to make it fairer and more just. However, we also have much to be proud of. My British Asian friends (many who arrived via Uganda, Kenya and South Africa) have thrived on the opportunities provided in the U.K. It’s important to also listen to these voices to give some balance.

    • I agree. Although I am a ‘white immigrant’ (European ancestry = 3rd generation Italian & English) the opportunities this country have offered me have been incredible and I appreciate being made to feel welcome.

      • As a BAME MS British citizen, Oxbridge educated now working as a permanent and pensionable UK civil servant at a high level for the last 15 years in many countries (diplomatic when overseas) let me assure you that we are welcome… to a point.
        I will never feel, even with my Oxbridge credentials and BBC accent, utilized when necessary, that I am truly ever British, one of your own. I will always be asked where I’m really, really from, be excluded from some conversations, and feel like an immigrant. The brown people in the cabinet are a great big fig leaf to cover up institutional and systemic status quo business as usual.

          • Yes OK. As a BAME professional yes your experiences are the morm but not unique to this country. What about places like south Asia where discrimination is enshrined in relgiom via caste system. Whenever I travel to such places where light colour is given priority. I find people who are quick to claim lack of fairness turn blind eye to same behaviour from their country of origin.

          • No my treatment at the NHS, Queen’s Square, has never been affected. It was impeccable and I’m very grateful for that. But I left the UK after I saw how my husband (MIT educated, Partner at a top tier management consultancy) was spoken to as if he was Fresh Off the Boat, and my wanting more aggressive treatment for my MS. I’m now in the USA where racism is blatant and in your face but you can fight against it as it’s a country built on slavery and genocide and belongs to the immigrants who built it, Trump and his GOP be dammed. I did HSCT in Mexico and now live in NY with a green card and application for citizenship to the US in motion.
            But I’ve seen at my London GP’s office the (well hidden) condescension and (mutual) mistrust when dealing with poor BAME patients. I once translated for a Bangladeshi woman I saw was having difficulty at my GPs, who was explaining to the doctor how she breastfed the baby shokaley (in the morning) and the horrified Doctor insisting to me that she knew that the woman had been feeding the baby chocolate. The rage I felt at the assumption that this woman being a poor, uneducated immigrant would be that ignorant and stupid.

          • No my treatment at the NHS, Queen’s Square, has never been affected. It was impeccable and I’m very grateful for that. But I left the UK after I saw how my husband (MIT educated, Partner at a top tier management consultancy) was spoken to as if he was Fresh Off the Boat, and my wanting more aggressive treatment for my MS. I’m now in the USA where racism is blatant and in your face but you can fight against it as it’s a country built on slavery and genocide and belongs to the immigrants who built it, Trump and his GOP be dammed. I did HSCT in Mexico and now live in NY with a green card and application for citizenship to the US in motion.
            But I’ve seen at my London GP’s office the (well hidden) condescension and (mutual) mistrust when dealing with poor BAME patients. I once translated for a Bangladeshi woman I saw was having difficulty at my GPs, who was explaining to the doctor how she breastfed the baby shokaley (in the morning) and the horrified Doctor insisting to me that she knew that the woman had been feeding the baby chocolate. The rage I felt at the assumption that this woman being a poor, uneducated immigrant would be that ignorant and stupid.

        • “The brown people in the cabinet are a great big fig leaf to cover up institutional and systemic status quo business as usual.“

          Looks like the U.K. can never win. If there are no ethnic minority people in the Cabinet – the government is racist. If there are ethic minority people in the Cabinet – they are just a “dig leaf”. I suspect that the current Chancellor is in the Cabinet because is is talented (from the times I have seen him at the daily briefing). Two of the above members of the Cabinet are private school / Oxbridge so it’s same old – same old. Their parents understood the UK system. The system (private school / Oxbridge) also dominates medicine, journalism, media (particularly the BBC) and the senior civil service. I would argue that access to private education and the advantages from going to Oxbridge are more important than the colour of someone’s skin in creating a society which is unfair. The chances of a white working class boy from Lowestoft or a black working class from Hackney becoming a doctor, diplomat, or BBC Director General are pretty much zero.

          • Therefore should we tell Oxford and Cambridge to bugger off, strip them of any state funding and allow them to charge what they like as a private education system and give up any pretence?

  • We are not American. Although our political system is adversarial at least the politicians from our two major parties speak to each other and agree on a lot. i don’t think the issues in the UK are necessarily the same as those in the US.

  • Not condoning racism but all these discussion about trying not to be subconsciously racist and trying to be better humans is futile and in the end pointless. We are genetically programmed to be racist to promote our genes at personal, community, world level. If and when we encounter alien we will biased to them as well. The best we can do is understand and more importantly admit our flaws instead of living in our intellectual ivory towers. In the end the reason why the stars are quite is because we are doomed to destroy our selves from hatred for everything…. like other species before us.

  • “As a secondary school teacher in a state comprehensive school in South London where a lot of her students have social problems and come from a BAME (black, Asian and minority ethnic) background, she has the moral high ground.“

    What would your daughter want to see changed? I would like to see less gang violence in the capital, less County Lines operations, less mindless killing of mainly young black men (the daily news of another stabbing or drive by shooting). The best way for any community to avoid contact with the police is to avoid crime.

  • Everyone is entitled to a free education in the UK and everyone gets free health care.
    We’ve become too used to both to appreciate them.

      • primary and secondary school education are free to all are they not?

        University education should be paid for, speaking as someone with the youngest child aged 15 who will be the first to go to University, as she wishes.

        And like my granny always used to say, it’s not what you know, it’s who you know……

        • I disagree university should be free too…..As a recipient of free education I am grateful and I have paid more taxes in than I ever got out as a result of my opportunity. If I had to pay for my education, I would never have escaped my lot and probably would still be working as a pearl diver (dish washer) in a hotel or a brick layer. I had friends who were brighter than me, but had fell into the social trap of poverty and the need to work rather than study.

          • There are different opportunities now and no large fees to the student, such GSK offer a level 6 degree apprenticeship, taken over 5 years.

          • Why does there have to be any?…Scotland can do it, Wales can do it, why disadvantage the people in England where an education can make them upwardly mobile. It makes no difference for the Richer people they pay their childrens fees after all they have been doing it for their privated education, university is cheap in comparison, I heard if Oxford had their way they would be £24,000 a year and that was a few years ago, it was the most stupid thing that Tony Blair did, well one of them…The Spectre of the Tuition fee was created in the Thatcher era, the Blair idea of 55% at University simply devalued a degree and made it a comodety, every one has one so they need to do a masters to be different.

          • The army no doubt pay your way too as they did in th past, but howm many studentships do GSK offer

        • Re. Education… Scotland has a smaller population than England.
          There are so many people going to uni now, and there hasn’t been the graduate jobs available when people graduate. I say this as a person with two degrees and I am working in a non-graduate job. It’s frustrating.

          Higher education is a business, getting bums on seats.

          My degrees haven’t improved my job prospects and I was earning more money in my job, before going to uni.

          • I sympathise but this is the the problem created by old Tone. When I did my degree it was about 2-5% went and to get an A in your A levels it was based on the binomial distribution and I think only about 3% could get an A in any one year and not 25% as it is now.

            Getting a Desmond was not a disgrace and if you was a lazy ass you got kicked out

            p.s. a clue is Desmond Tutu

  • I think you have also a story to tell since you came from South Africa the most inequality in the world

    Apartheid still rages on today

    Income inequality in South Africa today is, in large part, the legacy of the government’s former policy of apartheid. The policy segregated the country’s black majority from the white minority to the great economic and political disadvantage of the former group. Apartheid was the law of the land from 1948 to 1994, and many of the economic disadvantages that were law during that near half-century are now so deeply entrenched that South Africa has the worst income inequality of any OECD member or affiliate state. More than one in every four workers in the country are unemployed, and frequent labor strikes and skill shortages hinder the country’s economic growth outlook.

    https://eu.usatoday.com/story/money/2019/05/28/countries-with-the-widest-gaps-between-rich-and-poor/39510157/

  • Re. A masters degree is needed to be different… More like a PhD is needed, masters degrees are not enough from what I hear.

    I expect it matters more in certain subjects.

    • MD, I got a 2.1 on my bachelor’s degree, I graduated in 2006 and then a merit in my masters degree.

      I guess I need to be prepared to move to London, for a graduate job.

  • There was discussion that Bangladeshi population living in London have a high Covid-19 rate. It was also mentioned that they sometimes have suspicions about the NHS and so seek help later during illness, if needed.

  • I’m slightly confused as you say it is about BAME patients (which is what the original complaint was about) but the study you did, which you felt backed-up being non-biased, was based on ‘socioeconomic class’.
    Was a study or audit done on nationality or race or just ‘socioeconomic class’?

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