st georges hospital-tooting - Fibromyalgia Acti...

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st georges hospital-tooting

kimbles profile image
15 Replies

hello i start my pain management group next tuesday for my fribro, scatica and chronic fatigue. Has any body been to this one on London? If so any tips or advice. I am getting anxious about it as it as i am still not quite sure what to expect. It will take me about 1 to 2 hours to get there and back again on public transport. When i went for the assessment I was so exhasted from the journey I fell asleep through most of it. I was so embarassed. I work full time and it has taken over 2 years to get to on the pain management...mainly because my employer would not let me go.(it took 2 doctors, two occupational health and to hospital consultants for them to beleive fibro exist and that i have it) They finally are letting me go but are taking the three weeks programme (begrudgingly) as sick leave so bang goes my sick record again!! and they want to review my improvements once i return.....no pressure then!!

Just feel that it is an upward struggle to do anything around my health these days. Im sure im not the only one that has experienced this ith their employer. I truly beleive for some people if your not on the floor drag yourself around writhing in pain you can't be disabled or unwell....not that i know anybody disabled that actually does that. ....sorry for the rant. I am suffering with a bad cold and at work.

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kimbles profile image
kimbles
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15 Replies
Lucyhobbit profile image
Lucyhobbit

I can't help you with the pain clinic, but it sounds like you ought to be mentioning the disability discrimination act to your employers! Look up Access to work too - they did an assessment when I was working and made recommendations which my employer had to act on, including particular furniture they had to order. Work has to pay a certain amount and access to work pay for the rest. When I was working I also photocopied a page outlining the symptoms of fibro and I highlighted every one that I had - the look of horror/shock on my employers face was priceless. You certainly shouldn't be forced to use sick leave to attend something crucial to your health and wellbeing.

Hope the course is really useful for you and that you find at least some relief from pain.

kimbles profile image
kimbles in reply to Lucyhobbit

hi. acess to work has been denied by my employers as an option.

is there any law advi i can use to stop them using it as sick leave at first they told me that i would have to use my annual leave but i argued and they relucantly told me i could go on sick leave and they would not use it it to trigger a sickness disaplinary.. 2 docs. 2 OT and 2 fribo consultants 2.5 years later and the reasonable adjustment is share 2 chairs with three other people. which i cant adjust with out help.and work form home - but no acess to their computer system so i have to write everything in word and then cut an paste everything so when i get back to work im so behind. i got some legal advice a while ago and they told me it that i come under the DDa act but whats the point when employers can get away with it as long as they say they are reasonable. im so fed up. this just gets me so down sometimes i think this is the stem of my pain.. thanks for replying. it really helps to know fribro buddies are out there. xx

Lucyhobbit profile image
Lucyhobbit in reply to kimbles

They sound like a nightmare. They cannot deny you access to Access to work, you are perfectly entitled to contact them on your own, when I contacted the access to work team, I waited for a reply from them and only then told my employer what was happening. For legal advice I would contact the CAB, or if you have are a member of a union you should contact them first. Unfortunately some employers are bullies who get away with it because people like us are too drained to challenge them. It is not for your employers to say what is a reasonable adjustment. Work referred me to Occupational Health and he added to the adjustments they had to make. Are you working for a small or large company? Maybe you could get someone to help you write a strongly worded letter to the personnel or human resources department outlining what they must or must not do with regard to discrimination and 'reasonable adjustments'

*gentle hugs* from me and shout if you need me

kimbles profile image
kimbles in reply to Lucyhobbit

hello..well this is the joke . i work for a charity (employs about 700 people) that gives tenancy advice/support to vulnerable people in the community...including people with fibro. they would be outraged if this was something happening to a client. Perhaps pain mgt will be able to help otherwise i will contact access to work. i think over time i have lost my confidence and get stressed which knocks on my health. i probably sound like a crap worker but i get so shocked each time they call me in by what they are saying that i clam up and count to ten as i can feel my self feeling outraged. For me its easier to advocate for someone rather than myself as it not personal to me.

I had a OT assesment again afew weeks ago. the report was reasonable and again reminded them of the DDA that i fall under. the OTsaid at the time they can only suggest they can not put in place the reasonable adjustments. At my last sick review my union rep sits quitely whilst i stick up for my self and then says 'the union would agree with my opinion' after each point i make. grrrrrrhhhhhh!!! i think thats one of the reasons they are getting away with this abuse.. i need to think about who can help me with a strong worded letter. thanks again for your support. i truly feel like shouting xxx

Celtic-235 profile image
Celtic-235 in reply to kimbles

Go to local mp

kimbles profile image
kimbles in reply to Lucyhobbit

hi thanks so much. I have been feeling very low about stuff and i think my horrible cold and being at work has pushed me over the edge. I will contact the links below. thank you for helping and for seeing me through the last few day. i cant tell you how much you have helped. you made me feel heard. hugs kimbles.

Lucyhobbit profile image
Lucyhobbit in reply to kimbles

*gentle hugs* hope you're feeling a little better today. I'm always here if you need someone to talk to.

Celtic-235 profile image
Celtic-235 in reply to kimbles

PACE

PEOPLE ATTITUDE CALMNESS ENJOY x

Celtic-235 profile image
Celtic-235 in reply to Lucyhobbit

Hugs from me as well go to local cab

Celtic-235 profile image
Celtic-235 in reply to kimbles

Go to occupational health get MP INVOLVED DEFIANTLY

Celtic-235 profile image
Celtic-235 in reply to Lucyhobbit

You can still apply for pipif you work

Lucyhobbit profile image
Lucyhobbit

I hope Mdaisy won't mind me copying this from another thread, but I thought it might be useful for you to Kimbles..

Mdaisy FibroAction

Hello JeniO,

Sorry to hear you are experiencing all this stress which is likely to be exacerbating you Fibro symptoms and increasing your pain experience.

I would like to provide you with some information that may help. Firstly we have a page on our FibroAction website about Fibro, please see below;

fibroaction.org/pages/w...

We can also provide you with more information about your rights and reasonable adjustments if you email me directly using info@fibroaction.org. I would be happy to help and I look forward to receiving you email.

You mention some information about Fibro that you can give to your employer. Please also see our 'All about Fibro' range of factsheets you are able to download and print which may help, link below;

fibroaction.org/Pages/W...

I hope this information helps and please do email me should you have any other queries and I'll be happy to assist you further

Best Wishes

Emma :)

FibroAction Administrator

Celtic-235 profile image
Celtic-235 in reply to Lucyhobbit

Local group would also help have you got an advocate

Celtic-235 profile image
Celtic-235

Ask for home assesment

Celtic-235 profile image
Celtic-235

Get your local MP INVOLVED

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