Just need advice. As you know I've bee off for the last year and saw Rheunies yesterday. to cut a long story short they don't think the Enbrel is working for me but will in one month do my DAS score(yes they do it) and decide on future treatment. The feeling and what they told me is that some people dont respond to treatment and that they usually tell people to try to keep working but they think if I do I might get worse or spend all my days off in bed! I have been crying since the appointment. She said however miracles do happen and she wants to be more clear in one month.
However I have just had a call from work saying i have to go to a meeting tomoro as I have been off a year, I'm scared they will say the job cant be held any longer for me, but am now worried what the consultant says about her feelings i should stop. I am bored rigid. i have always worked since i was 13! i like using the money for holidays. If it had happened 5 years from now i would have been happy to stop.
So do i stay or do i go. Do I say nothing and hope they will retire me on ill health or do i try to go back if the job is available to me, i dont know...at all.. I wish they would just say, but the way the Government is they will not have benefits for me....need you girls and boys.
Maybe i should just wait to see what they say tomoro and then get union help???
Axx
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allanah
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I discussed this with my Occy Health nurse a couple of weeks ago - she said, that in her opinion, I would be looking at the same in a couple of year's time. She told me there are 2 levels of ill health retirement, one where you have to give up any sort of work, and the other where you are allowed to work up to 16 hours per week. The second option might be more appealing to you, and take the pressure off a bit not working full time hours, so you can get adequate rest, but still getting all the benefits of going out to work (not just financial).
My opinion is that you must involve your union, who should support you to make the right decision, and will negotiate on your behalf, if you're not feeling up to it. I've certainly made use of mine this last year at work, as my employers have been trying to downgrade and redeploy me as part of the NHS cutbacks - all this happened at the same time I was diagnosed with RA, so you can imagine I was feeling especially vulnerable, and the union's support got me through.
I wouldn't commit to any decision tomorrow though, until you've had a chance to think about implications. Maybe listen to what they have to say, and then request a further meeting, but with your union rep present?
If they finish you,you will be able to claim benefits. I, the benefit you will be on is esa,there are two types of esa,one is where you can work 16hrs a week. the other is where you can't work at all.
If you want to work they won't be able to terminate your contract. I don't think they can anyway. As trish has said get the union involved thats what you pay your dues for.
I got made redundant 2yrs ago and i have been unable to work since,would love to be able to do some work,but as i'm not the same 2 days running it would be very hard.
Best of luck.
sylvi.xx
I hope you don't go to the meeting tomorrow on your own. Can you get a union rep or a good friend to go with you?
Or, you could say tomorrow is not convenient. Much too short notice. Then sort out someone to go with you maybe next week.
My sister was placed in a similar situation. It can be very intimidating, especially when you aren't well.
The problem with ESA is it only lasts a year nowadays. Ill health retirement would be an option, but don't get bullied into agreeing anything for now.
cheers yes I am feeling vulnerable and know i could be taken advantage of but I will have to put my business head on I think!
Hi Allanah - not in the world of paid work but am self-employed so can't really say but you don't tell us the nature of your work? Is it manual or is it office stuff and does it require you to use joints a lot or is it mostly sedentary? I think it depends on the nature of your workplace a lot. If you know that your colleagues would be supportive and kind then that's one thing but if you know that it's dog eat dog and stab in the back territory (as many workplaces are in current climate) then even five more years might be fairly hellish if you are flaring a lot and still not on the right combination of meds for you? I guess the first step is getting in touch with your union rep and seeing how flexible your work place is prepared to be about your RA. I thank my lucky stars for being freelance even though I haven't been getting much work done for a year since the RA started. Good luck for that meeting.
TTx
Dear Allanah.. get all the help you can from the union. dont do any thing rash, it doesnt help that the consultant is suggesting you give up?.. with the right treatment things can be so much better.. dont let work rush you into any decisions.. there is an excellent lady on here called Lavender with legal experience who may be able to help you.
I agree with all what has been said, don't go to the meeting on your own, see if you can postpone it until you no what the medical profession guidance will be and then contact your union.
Thanks I know from your experience how hard it can be though, so i'm very unsure what to do
I agree with Summer Allanah don't do anything yet, the drug that will suit you could be just around the corner. Everything is just looking so awful at the minute with work pressurizing you and the awful pain that you have been in, you have got some great advice from the rest. Do you know my OT is always trying to get me to give up work as well. I haven't yet.
All i have is incapacity benefit cos of course i was going back to work and the tablets would sort me out within a week or so I thought, I booked a hospital near work for all my checkups as I thought I would go during my lunch break, how nieve was I! And now I have a hours travel every week and an hour back as i'm not in work. And work were happy to wait, but now i have had more flares, the shoulder trouble and more steroids into my shoulder and systemically steroids, and amitryptalline and the possibly now they say of fibromyalgia, I am now not sure if i will cope. The doc said if i did want they would back me up to claim benefits, but then what? sit here on my own doing nothing, i just dont know cos my brain says go and my body says whoa.
totally understand where you are coming from - when i was diagnosed a year ago, I was so scared and because my hands wouldn't work properly, i couldn't walk properly and I couldn't actually do any housework or tie up my kids hair thus i felt that i was useless - i had to go back to work and i did and the only thing that is hard is the driving - shoulder and elbows. There is disability living allowance could you try and get that.
I am just freaking I guess cause work have been supportive and talking about access to work and giving me equipment but then the Rheumy mad me think a bit differently. I will however just wait and see what they say, and then get help if needed from union.
I haven't said before I am a senior nurse and I have a team to run and we are in the middle of a new project that I run and I teach and won awards for last year but when it comes to me or the family being ill i turn into a two year old and seriously cant remember anything! I never worked in Rheumy though so its all new to me. I cant believe I have gone from a seriously busy person to a person in pain, 4 stone heavier with crutches and wrist supports and no brain.
I think cos i've worked all these years and done my degrees etc and all the professional updates I feel it would be a waste to be redeployed or put "on the scrap heap" but running clinics and doing late evenings and the stress of the NHS and the cuts at the moment make me very worried about returning, and what if I flare again and what as TildaT says its more hellish for me when I'm not even controlled yet. I wish this disease had not happened and am feeling sad at my loss of me and a bit sorry for myself .
But know when the meeting is finished there will be a sigh of relief or upset. I think Summer you are right not to be rash and Phoebes good point cos my incapacity benefit i dont know how long i can stay on that either. Thanks Sylvie for all your wishes and advice about more benefit and Trish53 thanks for explaining the levels of ill health, the one where i can work some hours sounds helpful.
Will let you know, definately hope the amitryptalline kicks in tonight.
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