Railway Dispatcher - safety critical work

Hi,

A little about me - Newly diagnosed with RRMS last week, struggling a wee bit to come to terms with everything at the moment.
Not long turned 30, physically in the healthiest I’ve ever been, got a job that I love and has career progression options.
Love running and hillwalking, generally being active.

Sadly I feel like a lot of this is going to change or come to an end.

My main concern right now is my job / career -
I work in a safety critical role within the railway (not a train driver) and I am worried that my diagnosis will end my career within safety critical work.
Annoyingly, all the jobs in this area are safety critical and there are no options for non safety critical roles within a 35-40 mile radius of my home.

I’m yet to tell my manager, the neurologist says she doesn’t see any reason why I wouldn’t be able to continue in my role as I am able to drive a car and operate heavy machinery (not that I do but good to know)
I am mainly wondering if there are any other safety critical workers, specifically within the railway, that have gone through this?
Were you removed from duty straight away?
Is there scope to do the job if the MS is well managed with medication?
Specialist has suggested monthly injections of ‘Ofatumuab’
Is this likely to show up on workplace drugs tests?

Any help or guidance is appreciated. Feeling a bit lost.

Thanks

Hi Connor,
Sorry about the diagnosis. It’s a really difficult time - so much to take on board at once. And it’s natural that your mind will race to all the implications this might have for your job, your life, your plans… many of us will relate to that.

Like you, I love running and hill walking. It’s over a year since I got diagnosed (after a long wait) and I’m still able to do both, just as much as I ever did. I go on walking holidays, climb mountains. Obviously I worry that it may not last, but for many people MS does not immediately switch these things off. Indeed, there are identical twins (Nielsen sisters) who both have MS and have been competing in the (non-Para) Olympics!

As a regular rail user, I’m very grateful to people in your role who have seen me safely on my way to work so many times. Unfortunately, I’m not an expert in it though. Can you think through the things you need to be able to do reliably? Can you do those things at present?

You have probably seen a long list of symptoms associated with MS. The good news is, we don’t all get all of them. Some are lucky enough only to get one or two. And since your MS is relapsing, even if you do have a relapse that stops you working, you may recover again. Some jobs have an official list of illnesses that automatically rule you out - I don’t know if that exists for dispatchers.

But the more sensible approach would to be to look at you as an individual and say, is your MS affecting your ability to do your job, or not? For example, is your vision affected? Presumably not if you can still drive. Only a proportion of people with MS have vision problems, and they may be temporary. Some people with MS have no symptoms most of the time. Some people are stable and virtually symptom-free for decades, some go downhill faster.

I’m on ofatumumab, it’s been great so far. A highly-effective drug like that can stop relapses for most people. I’d be surprised if it showed up on a workplace drugs test, I don’t know.

As a general point, I’d suggest that if your MS has an impact on your job, your employer has a duty to make “reasonable adjustments”. I can see that if there were no way for you to do the job safely, that might not work. But that should be the first consideration, and if at some point you can’t continue in your role, they might help you with redeployment. Your boss may have no idea (or an out-dated idea) of what MS is. Perhaps it’s better, if you do opt to tell them, to say: “I thought I should let you know I have been diagnosed with MS. My ability to do x, y, z is unaffected. Of course, I will report any change”. If they’re uncertain, refer them to your neuro.

If you get stuck with this, the MS Society helpline might be able to say more about the employment law aspects.

But I’d avoid jumping to conclusions about MS ending your physical activities or job.

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You’ll want to think about telling your employers, and it’s worth checking your contract and any related company procedures to see whether you are obliged to do so. most people in ‘normal’ jobs don’t have to tellif they don’t want to, but a role like yours might have special reporting requirements.

I’m really sorry that you have had the shock of this diagnosis. As Leonora says, things are rarely as bad as they seem, but it’s still never nice news to get. I hope that in due course you get some reassurance that it shouldn’t disrupt your working life as you fear.

Hi there.

My sympathies to you on your diagnosis. It can be a real shock and it takes time to come to terms with it. A quick response : as others have said unless you are really really unlucky MS isn’t going to bring your hillwalking and activities to a sudden end any time soon. In fact, keeping active is most definitely a good thing for folk with MS.

I was diagnosed some 18-19 years ago and it was another 8 or more years before I had any real problems. The diagnosis followed an episode of optic neuritis which resolved and, other than my weekly injection of Avonex I basically forgot that I had MS for the next 8+ years.

I didn’t work in a ‘safety critical’ role - and I’m not really sure what that means - but carried on working without any problems at all ( a fair amount of travelling, including on the continent, meetings, writing papers, managing budgets etc etc ). I suspect that my intellectual/ cognitive abilities are now less than they were but not particularly different to other 70/71 year olds!

Just to add that my Disease Modifying Treatment - Avonex - was one of the first and compared to more recent ones including it’s one of the least effective ones . The one suggested for you is far more effective!

So, with luck, your DMT plus keeping fit and healthy / a healthy diet ( follow the general mantra of what’s good for the heart is good for the brain) could give you a good few years before you hang up your walking boots ( my walking was in the Lakes and Scotland).

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