Fibromyalgia Action UK
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Benefits refusal

Hi I was diagnoised with Fibromyalgia in 1999, and was retired from my job as a nurse. Initially in 2000 I went for the medical for incapacity and got it until 2004. However in 2001 I had my second child and in 2003 took myself off the benefits and did some part time childminding I figured if I had my own child another child of the same age wouldnt be a problem and would be company for my child. Fortunately I cared part-time for a couple of children the same age as my daugter and was fortunate enough to have clients who were in college so I would have all the holidays off with pay but more importantly get a break every 6 weeks (as I was working term time) to recharge my batteries and energy levels.

Eventually the job took its tole my daughter got older and my symptoms were flared that I gave up work again for 18 months, at the end of this time I was called by the back to work team and started looking into employment managed to get myself a job at a local children centre. Again I took myself off the sick. At the same time as getting the job my aunt who had no children was 15 years older than me and like my big sister and second mother developed lung cancer, because of my nursing background I attended all hospital appointments but was struggling with the stress of caring for a terminally ill family member and my condition. I ended up being off sick many times and in the ended up off sick in December 2009 for 3 months, I gave my notice in the march 2010 at the end of the temporary contract.

I have been on the old incapacity since April 2010 and because I had gone back off sick with the same condition within a 2 year period I was placed back in the system where I was before I got the job so my incapacity was paid at the old rate. My aunt passed away in oct 2010 which broke me down emotionally flared all my symptoms and depression.

Since 2011 I have however been trying to become self-employed and start my own business as I hate being on the sick and dont want to work for any one as we know these people dont understand fibromyalgia.

I have declared one hour a week of permitted self employed work.

In February I was called for the medical on the day of my birthday march 16th. I attended the medical centre and was made to wait 1 hour and 20 minutes I realise now they obviously did this to test me. I had the day before the examination gone into a flare up in my lower back with pain shooting down both my hips and could barely stand straight

I knew that I was going to fail the test as most of us sufferers have across the board. I actually said this to the nurse that examined me and that I had my appeal form waiting as their system does not understand.

I visited my GP who is really good my Dr knows that I want to work and am trying to be self-employed. I told my Dr that I was in a flare up on the day of the examination she said the dwp are not looking at that they are more looking at if you can cook for yourself or go shopping. My Dr appeared quite incensed by how the goal posts have been moved with the assessment of chronic pain sufferers.

Yesterday I received a call from Dwp saying I had no points based on the nurses examination and the form I filled in was conflicting with the nurses report. I did mention to the woman on the phone about my gp being supportive she suggested that I go back to my gp for a report

and that I look at my wording and fill in the appeal form the nurse had written on the report that I said I had my appeal form on the ready. The nurse had said although I had said on the form that I cannot sit for long periods without stiffness occuring I had sat for over an hour in the waiting room.

However what she failed to say I had got up several times gone to the desk asked what the hold up was and I had walked around to unstiff myself.

So appeal time it is then lol I have made an appointment with my neighbourhood office for help with the appeal and I have copied the form I sent in and have made an appointment to see my gp in the hope of her continuing to support me with a report

Watch this space

9 Replies

oh dear you have had a real roller coaster ride havent you work off work etc bless you it isvery difficult to work with fibromyalgia as you dont know jhow you are goung to be from one day to the next but you should be proud you have done so welll despite everything . and i agree it is so important to have a caring and understanding gp that goes such a long way it really does .

good luck with your claim and i so hope you get all you deserve love diddle x


yeah diddle anyone working with fb deserves a medal!hugs x


All i can say is good luck hun,

I am not claimimg any benefits as my partner supports me and our three children. It is a nightmare from what i have read about all this esa thing. Its disgusting how some people who are genuine are treated.

I hope so much that you get what you need hun,

keep us updated how you get on.

hugs, kel xxx


thats so wrong!anyways a nurse isnt qualified to assess you!i hope your gp helps.mine is supportive,iv been on incapicity since 2001& may im to be assesed by atos but its at home cos im a wheelchair user.hubby just googled the dr &theres a dentist&phycitrist with that name working for atos!im seeing my spine specilist tomorrow&im telling him/asking him how/what can this dr examin me,that will get his back up!(spine specilist)i could no way keep a job,with disabilty&ahritis&fb!bet i have to fight for it!no one understands fb unless they have it,who would employ someone unreliable?you fight for it hun,we shouldnt be made to feel guilty cos we have fb or anything else!good luck hugs x


Thank you guys soooo much for your comments, Ive wiped away my tears of frustration (yesterday cried for england) all pent up oppression to be fighting after 13 years of suffering highly frustrating. Neighbourhood appointment booked for next wednesday for appeal form. Drs for 10th May gonna fight all the way xxx


you fight for it minfd you should not havre to fight should you bless your heart it should be given freely as soon as you are diagvnosed love to you diddle x


It's disgusting what they put you through...good luck on your


Hi to all on the forum just to update.

My appeal was held yesterday the 25th of Jan 2013, which I won.

The judge overturned the decision made on the 25th April 2012.

I am allowed the work-realted activity component of esa.

The tribunal found that I was eligible for 12 points in total.

However the tribunial was satisfied that there would be substantial risk to my health if i were not found to have limited capacity for work. This is because of suffering long standing with fm and the fact that I am able to remain reasonably well by pacing mself. If found capable of work I would have to undertake tasks that may be likely to flare up the condition that would be likely to incapacitate me for several days at a time. This conclusion was supported by the evidence of steps I had taken to undertake very modest self employment at a level I can cope with.

Victory was mine and I continue pacing myself with my self employment.

Thank you for all the support and advice and comments from all the bloggers on the forum

One love

Titian xxx


hi there

I am new here,my name is Maggie,I am a nurse as well.Could you imagine,I am not allowed to work as a nurse for 18 months due to take strong painkillers! I am not english, don't know, what to do now?! How I can live without money? have no help from family. Living alone, renting my flat. I am so disappointed with nursing body! instead of helping me,they send me a letter I am taking painkillers( Tramadol,co-codamol.escitalopram ) I can put my patients am myself in risk...I want to work as long as I can,is part of my therapy. But with NMC nobody won..can not come back to my country as I have no work there,no flat..

Why we meet such difficulties having constant pain,suffering for depression,having sleep disturbances etc..

really don't know what to do?


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