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TOPIC: dystonia and work......what fun!

dystonia and work......what fun! 4 years 4 months ago #2553

  • jasmine
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I hate the way that people don't get dystonia, my own family expect me to make hot drinks for them, the idea of using anything other than a standard cup is not exceptable, I once got an insulated camping mug only for it to go missing. I now use an extra large mug, and have aspestos hands!

Big hugs
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dystonia and work......what fun! 4 years 4 months ago #2556

  • Mermaid
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I agree,other people just don't want to accept that their are things that you can't do.
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dystonia and work......what fun! 4 years 3 months ago #2578

  • jayceebrie
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Thanks Christine for thinking about me and sending me hugs. I had a further review a week last tuesday and had to ask for the notes from the meeting yesterday.
I wasn't going to attend the meeting as no union rep was available and as i had only just joined the union i was told no-one could represent me for 4 weeks. So my partners friend is a union rep in another department and he rang one of his friends who tried to stop the meeting. He rang my line manager and HR to ask to change the meeting until i had representation. They both said no. So i then get the HR officer, whom i thought was my friend, coming into the office and telling me that the mtg couldn't be changed and i should take someone out of the office in wwith me. I said no and she kept on and suggesting various staff. In the end, after feeling bullied, i took one of the other managers in with me, who has been the only one who has ever asked how i am.
I had the occie health report which stated that i should be able to work closer to home or from home, various other things about the medication i'm on and how my stress levels are and about my forthcomjng hysterectomy.
Anyway, HR told me i was still on stage 2 of the capability procedure and this wasn't a stage 3 meeting. I brought up various things about how i felt and referred to the occie report. My line manager said she would consider me working at an alternative base. The Dystonia society had sent a letter explaining my condition which i had given them quite a few days before the meeting. I asked if they had read it and was told they had skimmed through it!!!! They hadn't looked through the leaflets either!! I was also told i had to work from 8 - 5? My working week is 37hrs and i am on flexi time. So i queried why i had to work more than my contracted hours and was told it will build your flexi time up!
I came out of the meeting feeling very low and very angry.
I have since seen my union rep and told her everything. She can't believe how they are treating me and said it's as though they are trying to get rid of you. She said i have enough evidence to take out a greviance against them i said but that will cause an atmosphere and i have to sit next to her every day. So we have put that on hold for a while.
Yesterday my line manager asked me to go into one of the offices with her to discuss a few things. She told me she had asked her line manager if i could work from somewhere else and he had said no. He said my role was countywide so my base was matlock. I am responsibld for 10 mobile libraries who are based all over the county. However, to me i could be based anywhere. He also said management needed to talk to me at times and i was accessible at matlock!! Then my line manager said i've been looking at your working hours and i told you not to come in at 7.30 but you have been doing on a few occasions. I said but if you look i didn't leave until 4.30. She again said you have to work 8 - 5. So i said i need that in writing then. In fact you need to re-write my contract so i know what you are changing.
Today i feel terrible. The stress of knowing that management have not taken the occie health report or the dystonia letter seriously makes me want to quit the job.
This has ended up being an essay, sorry, but it's off my chest now.
Jayne xx
Jayne Wainwright
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dystonia and work......what fun! 4 years 3 months ago #2579

  • Supergran
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I hope you are feeling better. Two points I would like to make about your work. Firstly asking a colleague to come in with you is a breach of confidentiality and I include the manager in this. The other point is your flexi time my core hours are 10am till 4pm and if I wake up with problems I take the tabs and stay home for an extra cuppa tea and when the tablets have kicked in I then get myself to work and I work through to 6pm or I do not take a lunch break to pay back the time I owe.

Can you get your hands on the procedures for absence management and see what the procedure is for mitigating circumstances they call it in my work. I have also heard it called disability something or other cant remember the other word. Another thing to consider is that you do not answer medical questions at work as you are not qualified to do this ( in the nicest possible way!) but you get your work to write to your GP. and you only answer to your ability to do the job and your 'work life balance' in terms of your after work activities....mine include knitting and sewing and seeing my grand daughter. You by that evidence that you are capable to do so many things that your work are not paying any attention to, if you do not have this recorded I would suggest you get an appointment with Occupational Health again and get these things recorded and ask for a copy of the report. There is also scope here for making an appointment withthe local DWP disability worker and tell them what is going on and see if they have anything to offer by way of advice. Some examples of this are I learned that the Government have a budget for voice recognition on the computer and they can fund the computer and training.

In short by taking control of the situation one it makes you feel better and secondly you are dealing with the corporate bullying and thirdly it is quite nice to watch management change their behaviour towards you and watching the frustration in their faces when you win the argument. I dont believe that we will actually win the war but as a friend said to me years ago if you are marching your not fighting!

Keep in touch let me know how you get on...remember absent monitoring procedures, do not answer medical questions/ appointments - possibly go to your GP and discuss this strategy ( I did and was told not to answer medical questions let them write to the GP and he will charge a fat fee to reply) , go to DWP and ask for an appointment with Disability Officer I found her to be very useful and supportive and see what they have to say.

All the very best my friend and I am sending you a big hug and lots of love

Christine X
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dystonia and work......what fun! 4 years 3 months ago #2612

  • jayceebrie
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Hi Christine,
I went to see my doctor last tuesday for a review of my medication. I took all my notes from work, occie health report, dystonia letter, the reviews from my line manager and mg neurologist letters. When she had read them she was totally appalled. She couldn't believe my line manager was taking no advice from any of the professionals! She signed me off for 2 weeks as she could tell i was anxious and my neck was pulling to the right and was painful. She said if i sign you ofc with Dystonia it may kick your management into doing something rather than signing me off with work related stress.
I went for my injections last wednesday and had double the dose and was also told to up my dose of baclofen. This now worries me as i'm on clonazapam, baclofen and nuproxen. I feel tired and not with it most of the time. Driving worries me and my concentration levels are not what they used to be.
I rang my manager to tell her i'd been signed off for 2 weeks. She asked WHY? I told her and also told her that my doctor didn't think that enough was being done to supporf me at work. She was taken aback about this. Low and behold i received a letter a few days later summoming me to a meeting which is tomorrow. I have my union rep coming with me this time. She has got all my paperwork.
Slightly anxious about tomorrow at the moment.
I can't believe people with disabilities have to go through so much agro. Plus with cervical dystonia sometimes it's not obvious you have a problem. Plus i'm not one to complain, i just carry on and manage which i don't think has helped me.
Anyway i'll let you how i get on after tomorrow afternoon.
Jayne xx
Jayne Wainwright
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dystonia and work......what fun! 4 years 3 months ago #2614

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Lots of luck and a great big hug for the meeting. I have not had the best of weeks myself, I have some kind of viral infection which means every time I stand on my feet I cant breathe. I am really fighting for breath. Been to GP he sent me to hospital....interesting thing this guy has treated me about 3/4 times in casualty so it was nice to see a friendly face...but of to hospital anyway and the outcome is rest, plenty of fluids and medication plus paracetamol and I am off my work again.

I am exhausted and all I have done since Friday is sleep. When I phoned into work my line manager told me to use text because I am so breathless she did not know what I was saying.

Lots of love and do keep in touch

Christine
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