Hi this is my first post. My partner got diagnosed 2 months ago and this has came as a complete shock. As with all people we have gone through the process of seeing what we can change with diet, exercise etc. The thing is we are both in the Police and this is a job where there has been recent changes in capability to work regulations. My partner has been in the job 15ish years and has already been hit by pension changes and the worry of MS on his employment is a serious stress. We’ve spoken with federation, occi health and bosses and they’ve all been supportive. Obviously it’s a demanding environment with long hours.
Is there any advice from anyone with regards to changes to be made, potential issues to avoid and things to be aware of?
I was a civilian in the Police up until 6 December 2015 when I took early medical retirement. It was an easy decision for me as I was 62. It all worked out very well and I received tremendous support at work and I was treated with compassion.
It seems that your partner has taken the correct initial steps by speaking to the Federation and OH. I know from colleagues that the full officer shift pattern is demanding and it is difficult to build in breaks during the shifts. I do not know, of course, what OH may have recommended, if anything.
Even though I had a desk job I found that fatigue was a huge issue. Even when I reduced my weekly hours to 20 I was a zombie after my shift. I also suffered from bladder urge incontinence, a common symptom of MS, and had to be near to a loo.
How you proceed depends on your partner’s symptoms and which type of MS has been diagnosed. If it is RRMS then the new thinking is to start disease modifying treatment immediately, and you can discuss this with your MS nurse. I would suggest speaking to the MS nurse for most matters, as you are only likely to see a neurologist about once a year. It may differ in your area.
Your partner may be able to carry on with a full shift pattern for some time, depending on the nature of the position, and your partner’s condition. I can sense from your post that this may not be the case. If so, you will both need to discuss a realistic contingency plan together, and then involve Federation at every step. Make sure that a rep attends every meeting with management and HR.
I cannot offer anything more specific without knowing more and, of course, I am not a neurologist. There are many leaflets in pdf form available on the MS Society website which provide valuable information on all aspects of MS.
If there is anything I can do I will do my best to help.
Thanks for your reply. We’ve not seen a neurologist yet unfortunately his referral got “lost” until today! His diagnosis has been confirmed through CT, MRI and lumbar puncture results. He’s symptom free apart from 2 months ago. We think he might have had this for 5 years though and with speaking to our gp its looking like RRMS. He’s 39 so retirement is a while way especially since the pension changed.
Right now he’s working the full shift pattern although he is office based. So he can nip to the loo if and when that becomes and issue. He is often the sole supervisor so a break is out of the question during his 10 hour shifts at the moment. I’m lucky enough to work the same shifts in the same area and all my bosses and colleagues are friends with him also. It’s just working out where we go.
The uncertainty of this is a nightmare because he hates being office based. He’s the sorting proactive type in our job and the thought of maybe never doing that again is frustrating him because that what he feels he should be doing. Honestly walking about the shops with him recently I swear he’s itching for someone to do something so he can jump in and arrest them!
We’ve been in the dark and have sought out all information ourselves. Diets have got better (dairy and sat fat gone) we actually aren’t too bad and swimming and waking all the time.
I/we are just worried. What changes should he take in our line of work? Should he look to change away from the shifts now before any fatigue hitting or wait until it becomes an issue. OH and his bosses have said they’re willing to support what we recommend would suitable but it’s just trying to figure out what to do because he’s still the same man I met a few years ago.
It is good that you have involved the appropriate people in your organisation. You two will be the experts in when changes need to be made and then you will be able to adapt. It may not be easy and the compromises are not always what we want, but staying in useful employment, (even if the role is not the preferred one) is incredibly beneficial. All the best Mick
When my energy levels started to impact my work , my employer got me to mentor new recruits, they got the benefit of my experience and I got help to complete tasks without burning myself out.
I fully endorse what has been written by Mogace. A desk job is clearly not what your husband signed up for, but it is a job working for a responsible employer that will take care of him. It was the right thing to inform management and colleagues from the very outset.
I am curious to know how your husband’s diagnosis was made and by whom, especially as you have yet to see a neurologist. When you do get the appointment I presume that both of you will attend so that you are both fully aware of prognosis and possible treatment plans.
Dealing with a diagnosis is difficult, of course, but in some ways it can also be a relief. Suddenly all the strange things that have been happening to your body make sense and you can see your life in a completely new and understandable context. I was not finally diagnosed until 2014 but the signs had been there since 1990, made completely obvious with the gift of hindsight.
You are both doing the right thing by reading as much as you can and improving your diet Keep doing all the normal things like walking and swimming.
Hi, I have been diagnosed for just over 2 years, and in the job.
I am still working shifts and fully operationally with only a couple of periods of time off due to the MS.
Like your partner i was worried about the core capabilities that have been brought in but the list is pretty manageable for me at the moment but this is with the support of my bosses and occupational health, as wel as having a good team that I manage as a supervisor.
Mine is Relapsing/Remitting but my biggest issue is fatigue but at the moment I am still able to continue and try not to think about the what ifs (i know its hard) and deal with the hear and now.
Feel free to message me, hope everything works out.
Thank you everyone for your advice. We’ve made positive changes and are looking towards being positive.
Alun he was diagnosed during his week long stay at the hospital due to the results of his CT and MRI. They did say that they wouldn’t have informed us if hey hadn’t been sure. They said it would normally be neurology job to diagnose but through their experience and the lesions and area of brain and spine effected there was no other diagnosis.
As as I said he’s still him and we’re hopefully for this to long be the case. His neurology referral has finally been made after an 8 week delay so now to wait in the appointment.