At our second MS Services Variance meeting, ‘Raising the Bar’, in Birmingham last week my colleague Helen Ford and I co-chaired the workstream on the social determinants of health (SDoH). 

What are the SDoH?

The SDoH are life-enhancing resources, such as food supply, housing, economic and social relationships, transportation, education and health care, whose distribution across populations effectively determines length and quality of life. As MS is such a disabling disease with poor quality of life it is likely to impact on the SDoH, which in turn will feedback and make MS outcomes worse. This vicious cycle needs to be broken if we want to optimise MS outcomes; i.e. when applying the philosophy of marginal gains we can’t ignore the SDoH when managing someone with MS. 

The following is a selection of slides we put together around the SDoH theme.

Do you have an example of how the SDoH can impact on a person with MS?

The study highlighted below from Sweden is an example of how MS reduces your earnings. Interestingly, the reduction in earnings even begins before MS diagnosis and clearly increases thereafter. I suspect some people who have prodromal MS have difficulty working, which impacts on the average outcome or earnings. Besides sickness absence and disability pension, educational level and type of occupation are influential determinants of earnings in pwMS. In other words, inequality plays a role in determining your earnings once you have MS. Are you surprised? I am not.

When we asked whether or not MS HCPs routinely screen for the SDoH very few hands went up in the room. The hands that went up tended to belong to occupational therapists; they clearly need to look at SDoH as part of their treatment plans. No neurologists put up their hands and therein lies a problem or a solution depending on how you look at things.

The following is a short list of some of the SDoH that may impact on MS outcomes, which we discussed.

  1. Level of education and health literacy
  2. Poverty (absolute or relative)
  3. Employment / unemployment
  4. Access to social services (personal independent payments, etc.)
  5. Home environment (heating, cleanliness, amenities, etc.)
  6. Local environment (safety, green spaces, amenities, etc.)
  7. Food poverty (absolute or relative)
  8. Transport (access and costs)
  9. Childcare (access and costs)
  10. Social isolation (social networks, access to the internet, mobile phone, data, etc.)
  11. Lifestyle factors (sedentary vs. active, smoking, alcohol and other addictions)
  12. Need to be looked after by a child (child carer) or ageing parents or other family members (aged carers)
  13. Cognitive impairment and hidden psychiatric comorbidities (depression and anxiety)
  14. Physical and emotional abuse

How do we address these issues in an MS clinic without upsetting our patients by being too overbearing? We did agree that there was a lot we could potentially do about some of these SDoH and that we had an obligation to at least consider these as part of our routine management of our patients and their families. Some ideas that emerged in our session include the following:

  1. Provide information about IT solutions to help pwMS.
  2. Start a high-risk register of patients within our service; patients on this list would need to be seen and contacted more frequently, ideally on pre-planned and regular basis.
  3. Start a home visit programme. Most services have had to stop home visits because of resource and staffing issues. 
  4. Make sure our patients know that they can get hospital transport so they don’t go out of pocket or reimburse their travel costs. 
  5. Convert were possible physical face-2-face visits with telemedicine options.
  6. To do a complex needs assessment similar to what is done in other disease areas to identify high-risk or vulnerable patients.
  7. Lobby the government to waive prescription costs for pwMS and other disabilities.
  8. Lobby government to create a healthy food voucher system for pwMS and other disabilities.
  9. Lobby government to improve social services for pwMS and other disabilities.
  10. Engage pwMS and include them in your service; for example, using an MS Health Champions model.
  11. Explore social prescribing to increase social capital.
  12. Enrol all patients into a lifestyle and wellness programme.

Wiberg et al. Earnings among people with multiple sclerosis compared to references, in total and by educational level and type of occupation: a population-based cohort study at different points in time. BMJ Open. 2019 Jul 11;9(7):e024836. 

OBJECTIVES: To investigate earnings among people with multiple sclerosis (PwMS) before and after MS diagnosis compared with people without MS, and if identified differences were associated with educational levels and types of occupations. Furthermore, to assess the proportions on sickness absence (SA) and disability pension (DP) in both groups.

DESIGN: Population-based longitudinal cohort study, 10 years before until 5 years after MS diagnosis.

SETTING: Working-age population using microdata linked from nationwide Swedish registers.

PARTICIPANTS: Residents in Sweden in 2004 aged 30-54 years with MS diagnosed in 2003-2006 (n=2553), and references without MS (n=7584) randomly selected by stratified matching.

OUTCOME MEASURES: Quartiles of earnings were calculated for each study year prior to and following the MS diagnosis. Mean earnings, by educational level and type of occupation, before and after diagnosis were compared using t-tests. Tobit regressions investigated the associations of earnings with individual characteristics. The proportions on SA and/or DP, by educational level and type of occupation, for the diagnosis year and 5 years later were compared. 

RESULTS: Differences in earnings between PwMS and references were observed beginning 1 year before diagnosis, and increased thereafter. PwMS had lower mean earnings for the diagnosis year (difference=SEK 28 000, p<0.05), and 5 years after diagnosis, this difference had more than doubled (p<0.05). These differences remained after including educational level and type of occupation. Overall, the earnings of PwMS with university education and/or more qualified occupations were most like their reference peers. The proportions on SA and DP were higher among PwMS than the references.

CONCLUSIONS: The results suggest that the PwMS’ earnings are lower than the references’ beginning shortly before MS diagnosis, with this gap increasing thereafter. Besides SA and DP, the results indicate that educational level and type of occupation are influential determinants of the large heterogeneity of PwMS’ earnings.

11 thoughts on “#ThinkSocial”

  1. Many things on your list are political. Do you think it a neurologist’s job to be political?

    1. So much of health and disease is related to politics; if you are a doctor you have to get involved in politics.

  2. Jay,

    Please could you refrain from posting these huge stories. We all have issues and problems but don’t keep posting huge essays on them. It’s best to make a few succinct points relating to the post.

  3. Prof G,

    Can I ask a serious question – has MS research stalled? You seem to focus most of your effort on various campaigns with lots of graphics, pleas for MSers to give their support, proposals for restructuring MS care…. All of this would fall away with a treatment which stopped progression or encouraged repair.

    I see on your twitter feed that you are very angry about disparities in gender pay. I watched both Wimbledon finals at the weekend. The women’s final lasted under an hour and was pretty mediocre, the men’s final lasted nearly five hours and was high quality. Both winners were paid the same. Is this fair in your view?

    1. Re: “…has MS research stalled”

      No not at all, but if you have been in the game as long as I have you begin to realise that you need to get your research outputs adopted. Slow adoption of innovations is a big problem for the NHS and for pwMS. This is why we also have to focus on health service provision. For example, our #ThinkHand campaign has helped with getting ocrelizumab licensed for pwPPMS.

      1. I agree with your point about getting research outputs adopted. My point is really about the lack of any big news research. We have a handful of top MS research centres in the UK, but I was completely underwhelmed by the recent MS Frontiers Conference (which takes place every two years). When you add in the MS research centres in North America and Europe, there is a dearth of groundbreaking research (cause, stopping progression, encouraging repair). There’s a Rip an Winkle feel to MS research – come back in 100years and we may have something! I’m pretty bored of the EBV, smoking, vit D, childhood obesity as potential causes research which has been pedalled for the last 20 years. I was a thin kid, always out in the sun and never smoked. It’s about time this lazy type research was jettisoned and research became more specific and useful.

      2. To quote Bill Gates: “Most people overestimate what they can do in one year and underestimate what they can do in ten years.”

        Look back 10 years and we have achieved a massive amount; look back 1 or 2 years and things look pedestrian. Science is slow but steady; MS is no exception.

  4. I’m so impressed and encouraged by the MS Services Variance – Raising the Bar.

    However, I’d strongly suggest that the list of 12 action points needs breaking down because it potentially confuses things by having the personal intermingled with the more global. By this I mean that some are long- term aims to engender change in government policy, whilst others such as providing IT info can be readily provided in consultations by MS nurses or neuros.

    Due to issues such as limited resources, I’d also recommend not looking to automatically enroll all patients on to some provision such as No12. It should be relatively easy to determine who should be offered any such provision. I’d hate the thought as someone who attends the gym and does yoga every week, who doesn’t drink or smoke, who eats a healthy diet, uses mindfulness and is lucky enough to be close friends with a psychotherapist, OT and a chiropractor, that I’m taking up a place that would be of so much more benefit to someone else!

    Finally, please be conscious of the capacity for distress, resentment and anxiety to undermine any, even the most excellent, provision. Years ago when involved in the adoption process working for the local Social Services Dept, we always had an experienced worker on hand to be able to leave the room and give time to an individual for whom the course/event brought up issues causing an emotional reaction or to address an issue someone was persistingly pursuing despite the agenda being focussed elsewhere.

    As Jay says: access to specialists is very limited, home visits – never, and reactions such as ‘what the hell am I doing here being told to exercise, when there’s no treatment for PPMS/not the treatment I want?!’ will all complicate and undermine endeavours that are intended to work in the interest of patients.

    I’m currently reading A. Kay’s This is Going to Hurt. Very amusing – yes! Drives home the reality of how incredibly overworked NHS staff are – Oh Boy! Yes! Within this context and within an arena of distressed or dissatisfied patients any new initiatives need to be very carefully orchestrated.

    Perhaps it would be more readily received if provision were put into the context of limited capacity by for example: IT solutions so as to empower you as a patient because of the evidence of benefit to PwMS and because of the lack of ready access to HCPs. Since receiving Lemtrada my three monthly contact with the MS nurse has been changed to alternating between face-to-face and phone contact. Reasons given a) I’m doing well b) to manage her workload. On this basis, it was an easy change to accept.

    Like Jay, I want to finish with wishing you all the luck and hope you success.

  5. Re No 3 – Before ms diagnosis I was misdiagnosed with a stroke. The after care was great and I had home visits from a team who gave me a folder to help me organise and remember consultations, treatments, therapies, test results etc. I don’t think they could have been more helpful. Being handed over to Neurology was a huge step down in care, so disappointing.

    Re No7 – I have a T2 diabetic friend who pays little attention to her diet and uses insulin to suit what she wants to eat. The household income is very good indeed with plenty of money to play with. She doesn’t pay for prescriptions.
    Another friend takes thyroid medication. Household income also very good with plenty of money to play with. She doesn’t pay for prescriptions either.
    Their conditions do not restrict their ability to work or play at all.
    I don’t resent them, they don’t make the rules.
    How is it that pwms have to pay for prescriptions? It makes no sense at all and is wholly unfair. The whole prescription system needs an overhaul. How is it that only the English pay for prescriptions anyway?

    1. Hi A, Re. No7
      Even people working can apply for a reduced costs NHS prescription certificate, in England. The NHS low income scheme. You might get partial help, even if your salary is not low.

      If your MS / disability means you can’t go outside without help from another person, you might be entitled to an NHS Exemption card. Check the NHS website, ‘help with prescription costs’.
      I know it’s not the same as free prescriptions for all.

      1. Are pwMS aware of the NHS Exemption certificate ?
        That they can get one if their physical disability means they cannot go out without the help of another person?

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