Patrick: Our next questioner says, I do work but I find it doesn’t change my MS. Is there a clinical reason I should stop?
Karen Vernon, MS Nurse: No. I think, again, it becomes very individualised and you need to look at the person, their job, the hours they work, but actually, a lot of people get more than… it’s a physical interaction with work, it’s a social interaction with work. So if people are okay and it’s not affecting them, then you carry on working. Obviously sometimes adjustments do need to be made and we can refer through to Access to Work, who are a good source of support, to keep people in employment, occupational therapy, the employer’s occupational health departments are often very good. Employers do have an obligation to make reasonable adjustments. What that may be will vary depending on employee and what the job entails, but obviously there’s a financial implication as well in relation to employment. We all know now that the benefits system is increasingly difficult to navigate and because of that, that is creating more stress, you know, on people. And people want to work, you know, there’s very few that don’t, and I think trying to enable people to carry on work is absolutely important.
But, I think it’s something that perhaps isn’t addressed quite as much and there’s a lot now of occupational therapies that specialise in vocational work, so there are people gaining expertise out there to help people within the workplace environment. So, again, it’s difficult to say generally for everyone, because for some people, given their jobs, that may not be possible. But likewise, if that is the case then it may be about retraining, getting in touch with the disability employment advisers, getting advice, and also talking to other people with MS as well to see what they do and how they cope with issues at work. But from our viewpoint we would advise people to remain in work if at all possible, which is a complete difference to a few years back where people were not particularly encouraged to remain in employment.
Patrick: Okay, so the advice is to remain in work, or an encouragement to remain in work?
Karen Vernon: I think it’s more an encouragement to remain in work, because again, obviously, everyone’s workplace is different, the work patterns are different, people’s response to stress within the workplace will be different. And sometimes it’s the environment where they work that actually creates more of a problem than the person’s actual MS and that also has to be taken into account. You know, things like where the toilets are, where you have to park before you get into work. The main reason why people either reduce their hours or give up work totally is because of the fatigue, so actually it may be looking at someone’s symptoms, because they may feel that they can’t carry on work because the impact of the symptoms is really quite bad at that time, and if they haven’t been looked at, trying to improve them may actually help people in work.
Patrick: And where would you encourage people to go if someone said I’m struggling with work, or a question like that?
Karen Vernon: Yeah, so obviously when people go along to the clinic appointments, then to talk to their MS team about that, whether that’s the nurse or the consultant. As said, there is Access to Work, which people can self-refer to, so if they just google that, the excellent information about that, through the Department of Work and Pensions website. There’s Citizen Advice Bureau, the charities, but, as I say, also your GPs can refer through to community rehabilitation teams. So there is a lot of information out there and there is good old Google that, you know, is a mind of information for things like this. But obviously the charities will act as signpost. And most areas do have support, so in Greater Manchester we have Basics, which is for all neurological diseases here, and we can put people in touch with them and they have someone there whose main role is to give employment advice around retraining, and I know that is replicated in different places up and down the country. So the advice is out there, but I’m also aware that sometimes it can be slightly difficult to navigate and that in itself becomes a fulltime occupation. So talking with your care providers is what we would suggest.
Like I’ve said earlier, so there are certain times that you may need to take more information about the job, and one is around shift work. You know, so actually having some sort of sleep/wake cycle can be troublesome and in itself that can mean more symptoms are more noticeable if you do shift pattern. But we have a number of people who can carry out shift patterns absolutely with very minimal problems, whereas others find that they can’t do that, and that is more around the symptoms that may be worse typically at night. So if they’re working at night they’re more aware of the symptoms or the fatigue, and that can add to the disruption of the sleep/wake cycle. So whilst in that instance we wouldn’t be saying stop work, again, we would be advising to work either with the person’s occupational health department or the GP or looking perhaps for a moderation of duties or perhaps lessening the shift pattern. But some people are fine with that and it’s just finding out what’s right for you.
Patrick: Thank you for that.
Karen Vernon: Okay.
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