The following is an excerpt from the executive summary of ‘Health and Work Champions: a Pilot Training Programme’, (Martin et al. Feb 2018). I am highlighting it because it has relevance to MSers and MS-related HCPs. HCPs are being fingered as part of the unemployment problem; “healthcare practitioners, who may consider that giving advice to refrain from work is part of their duty of care“.
Is it inevitable that MS will lead to early unemployment or medical retirement? What has been your experience with your MS team? Have they helped try and keep you employed? Any suggestions to help?
Shift.ms have put together material to help HCPs. Please check-it out.
“Ill-health among working-age people costs the UK economy £100bn a year in sickness absence (DWP and DH, 2016). Unemployment is not only costly for society but also bad for health because of its association with greater physical and mental health morbidity and mortality (Janlert, 1997; Martikainen and Valkonen, 1996; Waddell and Burton 2006).
The Royal College of Occupational Therapists (RCOT) and Public Health England (PHE) share a common aim to close the disability employment gap and support people who wish to remain in work or return to work after illness, injury or disability. Hence, they have jointly set up the Health and Work Champions Project, which features peer-to-peer education to shift healthcare culture in relation to work and health. This project features as an example of good practice in both the original Government Green paper about employment and disability (DWP and DH 2016) and the follow-up command paper Improving Lives: the Future of Work, Health and Disability (DWP and DH 2017).
Research suggests that unhelpful misconceptions around work and health can sometimes be reinforced by healthcare practitioners, who may consider that giving advice to refrain from work is part of their duty of care (Wade and Halligan, 2004; Mowlam and Lewis, 2005; Pires et al, 2006). Healthcare professionals’ attitudes and beliefs in this area may influence the outcome of rehabilitation (Bishop, 2008) and it is reported that they do not routinely address work issues (Moore, 2011).
A shift is therefore required that would see it become routine practice across healthcare to use employment as a useful functional outcome of healthcare interventions and a clinical tool for assessing a patient’s/service user’s recovery/or adaptation to illness or injury. Asking questions about staying in or return to employment will become standard practice for all healthcare professionals. The project aimed to use Health and Work Champions to facilitate the shift while also providing the Champions with leadership roles in their employing organisations to raise their profile and utilise their expertise in occupation, health and wellbeing.
Evidence suggests that most health care professionals tend to base practice decisions on entry-level education and personal experience (Schreiber et al, 2005). They typically solve clinical problems through consulting with their peers and opinion leaders before examining empirical evidence, which supports the choice of a Champion’s model with opportunities for interpersonal interaction, when promoting quality improvements in routine clinical practice (White, 2011). “
A problem I have encountered trying to return to work from a position of not having worked for some time due to MS is discrimination. When disclosing MS on applications I am not even interviewed despite meeting job criteria. Have been told that though this is supposed to guarantee you interviews if you meet job criteria that in practise employers ignore this and/or find some ‘reason’ not to interview you. There is a lot of stigma and prejudice around MS and I think some sort of campaign around it to educate society about it might help. If the medical world can help with that as well then that would be great.
I don’t think it’s the MS teams that need to work harder to keep us in work. My ms team were amazing, full of helpful information re workarounds for my symptoms and disability rights. It was my employer who forced me into early medical retirement because they didn’t really want to deal with extra time off for appointments, relapses, extra breaks and assistance in some areas. None of these things were excessive but I was pressured into medical retirement.
This wasn’t a small company either, it was a huge government organisation (begins with H and ends with C 🙂
I’m 57 and feel I still had some good years of employment left in me if they had not been so rigid and target driven. That said, I absolutely love being retired. My symptoms and life quality have improved tenfold without all the stress.
No, my MS team have not discussed employment advice with me, but I have informed them I have been a volunteer worker recently and do around 10 hrs of paid work a week, currently. So they might feel I am busy.
I am on ESA and am allowed to work up to 15 hours a week, in paid work and it won’t impact on my benefits, it’s called permitted work. The DWP consider those that are working 16 hrs or more a week are in full time employment, that’s when the DWP might stop or decrease the benefits. It’s strange as I previously considered full time employment would be 37 hours a week or more.
It feels good to know this, as I was misinformed previously, that I could only earn up to £20 a week and earning more would impact on my benefits, but this is not true.
I think it’s really important MS Teams are aware of this and read up on it. As pwMS can test the water, so to speak, to try out a little paid work.
I feel good for working but know if I have a relapse and feel too ill to work and stop working, I don’t have to go through the mission of restarting a benefits claim again.
However, I am fully aware some pwMS are concerned about working some hours, which may trigger a reassessment for work capability by the DWP and the DWP claim they are fit for fulltime work.
Applying for Disability was one of the hardest things I’d ever done since being diagnosed with Multiple Sclerosis. For my Doctor, I believe it was almost as hard. She spent some time asking me Why? Are you Sure? I was surprised at her Careful thoughts. I even started to Doubt my feelings. That I just couldn’t work, then collapse every day, some days, more days unable to go to work. The next day having twice as much work. I saw the Social Security Doctor who agreed I was Disabled and unable to work as a nurse as I had done for 35 years. The second opinion welcome. Perhaps bureaucrats should rethink their expectations.
I have experienced discrimination about my MS and work, from people who really should know better; my supervisor and a volunteers manager.
These two people assumed my MS means I am not capable of working in a 20 hour paid, local job. My MS is invisible. Discrimination is still common.
So I am now not keen to disclose my MS.
No doctor ever told me to stop working. They didn’t have/take any time to talk to me about anything But I wish I had stopped working sooner than I did. I struggled on too long with severe fatigue, falling in the office, continence anxieties, and less than caring colleagues. Also, the poorly ventilated office was a hive of viral infections, which caused me a lot of damage.
I am relatively young and not disabled. I have a nursing job interview on Monday. Is it dishonest to not disclose my MS? I am safe and fit to work, so it really seems like unnecessary information for my employer to have at this point. Any thoughts on disclosure?
I would recommend discussing with your union for the official line. In a very similar situation, I did not declare anything. There was an equality exercise for ‘disability’ in the form, I do not consider myself disabled so did not select this. I declared my condition in the relevant employment forms after getting my job offer. Following this, I saw Occupational Health before I started my new job who had a confidential discussion with me, and declared me fit for work with no issues. Again just my experience very generically and you are best to check the specifics with your union, if you have one. All the very best for your interview.
If your MS is not affecting your work, then there is absolutely no reason for you to disclose. It is really up to you, if you need to at a later date, then you can disclose to who you want to. I was already employed when I was diagnosed, my MS does not affect my job at this point in time, but I chose disclose to my 2 bosses and 2 co-workers, because of my job I think my bosses have a right to know and I trust them…. however I have not disclosed to most of my co-workers, it has nothing to do with them and they don’t need to know.
You don’t have to declare at the interview but I believe it would be unethical not to declare your MS when being assessed for fitness to practice as a nurse if you get the job. . If you are well and don’t have any symptoms that could impact on your work then you will be fit to practice. Not declaring could lead to problems later.