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work related

Yesterday I had an informal meeting at work about my sickness abscense. They wanted to know how they can help me return to work, although they have documentary evidence from the occ health doc that he is unsure if I will ever return to work.

I’m not sure I want to be pensioned off just yet. And today I’m meeting with consultant to discuss Tysabri. Although going to work yesterday for 1 hour meeting has left me completely drained. I requested working only 1 day a week. I currently do 16 hours. But they have told me its against trust policy to do that. I could have a month of return to work at 1 day a week, but after that would have to return to 2 days.

If they do dismiss me on health grounds it might be that the pension agency might not say I qualify for a pension and if that happens I’d be stuck.

Work wants me to commit to an actual return date but at the minute I can’t tell them that. But surely I’m willing to work then saying I can’t work only 1 day a week discriminates against me.

Hi,

I’m afraid their duty to make “reasonable adjustments” doesn’t mean having to agree to any solution you propose, such as working only one day a week indefinitely. I don’t think many employers would agree to that, and I don’t think the law would insist it’s “reasonable”. Where would you draw the line? If someone insisted they could only manage an hour, would the employer have to accede to that? I don’t think so.

I don’t mean to sound harsh, but reality sometimes is harsh, and discrimination has to be more than simply “not getting what you want”. As the policy presumably applies to everyone, and there’s no suggestion it has been applied more harshly in your case, than to anyone else, I doubt it’s discriminatory. If you could find an example of someone in similar circumstances, who HAD been allowed to work one day a week indefinitely, then I’d agree with you.

On the positive side, your employers clearly are trying to accommodate you, by asking how best they can help, by offering one-day working at all - even if they can’t authorise an indefinite period. In other words, they are offering you a “phased return”, which is pretty normal in these circumstances.

I do appreciate, though, that you can’t commit to a firm date at the moment.

I think you need to check out your pension arrangements more thoroughly. Your mention of “the trust” suggests that you may work for the NHS. In which case you presumably have an occupational pension scheme? If you are found genuinely unfit for work - which at the moment, seems probable - there shouldn’t be an issue with getting your pension authorised.

You already have evidence from Occupational Health that it’s dubious whether you can ever return to work. I don’t know what sort of evidence the pensions people will want, but if you’ve already got professional opinion veering towards the conclusion you “might not” ever be able to return, it certainly looks as if you’re along the right-lines, evidence wise. Dispute may arise if they suggest you might be capable of a different job - just not this one. Many pensions (I think the NHS is one of them) will only pay out if it’s accepted you could not reasonably do ANY job - not just your present one. Proving you couldn’t do any is obviously harder than proving you couldn’t do the one you have just now.

Good luck, whatever happens!

Tina

I’ve just got back from consultant, he was very vocal when I said they were pushing me to commit to a date to return. I’m about to start Tysabri as soon as they have a slot available and that will hopefully make a huge difference. So they can wait a bit longer before pushing me, and there is evidence to suggest that it means that those in work can actually work more hours.

As I understand the pension scheme there are levels within it, from not being able to do anywork to at some stage will be able to return to work. The problem is that being a registered nurse I have to work so many hours in a year and if I have any length of time off I would have to return to practice. I understand that colleagues who have returned to work for lessd than 16 hours actually use their holiday entitlement to enable them to do this, but as I work annualised hours to fit in with the children this option is not available to me.

I just feel really poorly informed and its all pushing me down a path that might not necessarily be best for me in the long term, but its what they want. Next meeting I’m going to find a union rep who is able to come with me to help talk for me as at the minute everything feels in a bit of a fog. It could take months to get a pension decision and I can’t afford to be without money coming in. I need someone to help in all this but still and as usual when it comes to issues arising from the MS I feel very much abandoned.

Do not go to any meeting without Union Rep.; colleague; friend someone who can witness what is said. Do not sign anything or verbally agree to anything without first passing it through your Union; EHRC http://www.equalityhumanrights.com/ OR ACAS http://www.acas.org.uk/index.aspx?articleid=1461

As your employers know of your MS diagnosis you have the safeguards of the Equalities Act; a synopsis can be seen on the EHRC Website.

Early Retirement due to Ill Health has different clauses in every organisation. This only comes into play after being sick after about 1 year. You should get a quote of your entitlement from your pension department and see if this plus DLA and perhaps ESA is a liveable amount. You can contact the free Pension Advisory Service http://www.pensionsadvisoryservice.org.uk/ who will guide you on this route if that’s what you want.

DLA is a benefit you should claim now; ring 0800 882200 for the forms.

Let’s hope Tysabri works for you as it has done with many others.

George

Thanks George, I suppose I am still in denial about everything. I’ve got not very much in the way of support and being a parent you find ways to do everything even if it ultimately makes you more unwell. I have very little feeling in my fingers and find dealing with dirty nappies particularly difficult and revolting when my hand slips off the wipe! We have frozen veg so I don’t have to chop it. I suppose the things that I can’t do have crept up on me so slowly that I’ve adapted to deal with it, so therefore I don’t think of myself of having problems with every day stuff. I don’t iron, I do everything by pacing myself. Today after the meeting at work on wednesday and the meeting with the consultant on thursday I can’t really do anything as I’m too fatigued. But I will do as sitting on my bum doesn’t look after the baby or clean the house. I just have to do things slowly with regular rests. I took the kids to school this morning. I’m seizing the opportunity of the baby being in bed to sit and rest (although not so sure this is resting) before I do something. She will go back to bed after lunch and then I do nothing until I do the school pick up. Then I have to muster all my resources to deal with the big ones until my OH comes home, although as he has been at work since half four this morning then he is not always that helpful. I can’t see how I would qualify for DLA. And as the whole work thing is stressing me, having to prove that I can’t work, then adding in being interoggated by someone else isn’t going to be doing me any favours.

I’m going to contact the union to try and get someone to help out (although previous dealings with them have not been that useful), but what I really need is someone to help signpost me in the right direction and just support me. My OH likes to think he is supportive but he can’t see how much of an effort it is to do things. He makes very light of it, and has not yet asked me how my appointment went with the consultant yesterday. I’ve yet to meet the MS nurse in this trust, so don’t know how helpful they will be. My GP is next to useless.

Hi ya,

Contacting ACAS, The Pension Service and the other suggestions that George and Tina have made is sound advice. Have you considered contacting the CAB too - they too may be able to point you in the right direction. The government website can also prove useful for other point of contacts and for information on benefits, financial matters and various support services.

If you’ve still not heard from the ms nurse then why not take matters into your own hands and contact her/him yourself. Ring your neuro’s secretary if needs be. An ms nurse can be of great help - mine definitely is!

Conveying to others just how much our symptoms affect us and the impact it can have on our lives is not always an easy task, especially when it comes to our nearest and dearest. Aside from sitting down and being brutally honest with them the other thing you could maybe try is to order some publications for them to peruse through themselves. Maybe your OH could have a look at this website himself? Sometimes it takes reading other peoples accounts of how their lives are affected or seeing it laid out in black and white, for the reality of it to actually sink in. You said yourself that you may still be in denial about everything, maybe your OH is too? It’s a lot for anyone to get their head around and it can take time.

Hopefully you’ll find Tysabri beneficial - that alone could make a huge difference to you. Fingers crossed!

Good luck

Debbie xx

Hiya,

I have a friend who works for a nursing agency, she tells the agency what hours she can work (she has 3 kids, so is sometimes very restricted in the hours she can do) and the agency takes it from there - have you thought about that? I also have another nurse friend who only does one shift a week in the hospital - child care is the issue here too, her husband is a fireman, so also works shifts. I don’t know how she got approval to only work one shift (in ITU), these decisions maybe vary from ward to ward?

You should qualify for DLA, it’s not means tested, so doesn’t matter if you and/or your husband work, and from what you’re saying, you’re “bad enough” (for want of a better phrase) to qualify. The forms are a bit daunting, but do apply for DLA, I think that you can get somebody to help you with the forms.

Good luck

Luisa x

Thanks everyone. I’ve had this thing hanging over my head for years with not a lot of change and suddenly I don’t seem to be able to get away from it. Today I’ve just been the most horrible I can be. Forced into going out and socialising last night (although only til 8 as we have to get back for the baby to sleep) when all I want to do is chill, then crying my way through trying to sew on badges onto my daughters new cub uniform (going to have to wash it now as its covered in snot). Thank god I couldn’t find the badges that need to go on my sons uniform. Oh I wish Granny was just around ther corner.

As I was told by the occ health doctor for the agency that I applied for (an got turned down as I’m not fit enough to work at the minute), I’m too pig headed for my own good and I’ll struggle on regardless of how much pressure it places on me. I don’t want to give in to this thing that takes over my life (I witnessed what it did to my grandmother, eventual immobility leading to terrible pressure ulcers that got infected and killed her), I don’t have time for it. I’ve got 3/4 kids and a partner and want to lead a life where I see people and do things. Not sit at home and cry over sewing on badges, or have to buy a new pram for my baby as I couldn’t undo the straps on the original one we had, or have to crawl into bed after getting involved in the ancient sport of wrestling a kingsize duvet into a cover.