Hi All, I’m Jon, 40 year old, male who was diagnosed with MS a couple of weeks ago. It took quite a bit of waiting to get there almost 2 years, but from what I’ve read that’s quite quick for the NHS 
. I was under a Consultant Neurologist for the vast majority of that time had about 4 MRI scans and lumber puncture whilst seeing them though they were said they were unable to give me a formal diagnosis all they could say is that it was their medical opinion that MS was the likely diagnosis (which made things “fun” with work). They referred to a MS specialist Neurologist who finally gave me the diagnosis of MS a couple of weeks ago. I was mostly paired for MS to be the diagnosis, it was a relief to have a diagnosis as it means at least I can stop worrying and wondering now. I guess I’m still coming to terms with it though.
I’ve had a couple of 2 week long absences from work due to fatigue I have experienced but generally managed to work around the fatigue and exhaustion I experience. I also have numbness/tingling in my hands constantly and have done for almost 2 years. I’m not sure if this has got better or worse during that time of if I’ve just got used to it. There’s also brain fog, wobbliness and clumsiness I experience that I’m sure is the MS or a knock on effect of the fatigue.
My work are now being making things difficult saying that the fatigue I experience and resulting absences may count to my absence management and result in dismissal/final warnings. Despite me having kept up to date as things progressed and my diagnosis. This isn’t really helping things as is an added stress/worry I could do without and meant I had a sleepless night which in turn hasn’t help with me trying to recover from the recent bout of fatigue I was off with. Despite work being aware MS is covered under the Equality Act.
Has anyone else had issues with work policies or have any advice regarding this?
Hi Jon, I don’t have experience of problems with employers but it’s worth bearing in mind that MS is an ‘official disability’ and as such under law employers have to make ‘reasonable adjustments’ for employees with the disability . I’ve no idea what ‘reasonable’ means in practice but try contacting the MS Society’s help line which amongst other things does deal with employment issues (contact details on the Society website).
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If you haven’t done so already, on the main part of this MS Society site there’s info on working and MS. https://www.mssociety.org.uk/living-with-ms/working-and-ms
I think there’s an MS Society helpline that can offer advice too.
You’re right: MS is one of the few ailments with the distinction of a specific mention in the Equality Act 2010 (lucky us!) and the legislation does afford protections. As far as I am aware, the law does not give us automatic exemption from illness/capability processes that form part of the contract of employment, however, much as the TUC would like it to. At the end of the day, if you just can’t fulfil your contractual obligations any more, the employer can terminate the contract as long as it does so fairly. What the Equality Act does do is to oblige employers to make adjustments to the contract that we ask for and that are aimed at helping us to keep our side of the employment contract bargain and that are deemed to be ‘reasonable’ - reduced hours, say, or working from home, or changes of duties to fit our abilities. What constitutes ‘reasonable’ under the law will vary from case to case: what can reasonably be expected of a massive company might not be reasonable to expect for a small family firm, for instance. There’s masses of legal precedent on interpretation now - the law is 15 years old - and I’m sure there’s masses of case law to consult.
It is always worth checking your Ts&Cs including policies on capability/attendance etc - some (particularly in the public sector) do contain protections over and above the legal requirements, and in that case your employer would be obliged to work within those or be vulnerable to legal challenge down the line. Your employer might be one of those but frankly it doesn’t sound like it! Your Ts&Cs or company policies or custom and practice or arbitrary decisions on the part of bosses cannot legally undercut the protections enshrined in law: in that case the law always wins, and never mind what your employer says about it. It can be a long and bruising battle, either trying to enforce that or, if all else fails, getting legal redress if you find yourself treated or dismissed unfairly, I’m afraid. There’s always a good case for getting to grips with your rights early and working proactively with your employer to let them know what you think you need and how you want them to help you. Keep a paper trail of everything, particularly requests for reasonable adjustments and their response. The more evidence you have that you made timely reasonable requests that were unreasonably refused by them, the stronger your position if it all gets difficult.
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Hi Jon, I too have just been diagnosed and figuring it all out and coming to terms with how you feel is tough enough, without additional worries at work.
I would suggest writing an email to your line manager and HR explaining your diagnosis and asking for support with reasonable adjustments. These are designed to enable you to work and protect your ability to do your role. They are a mutual agreement and should be reviewed regularly.
Self advocacy will be my mantra going forward. Good luck.
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Hi, I’m Bruna and I’m from Brazil and I’m also having difficulties with work. I hope we can solve this problem soon and that we can have a decent life with our rights respected.
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