Fibromyalgia Action UK

dear mr cameron

theres an old native american saying"dont judge a man until youve walked two moons in his moccasins, well I suggest you try walking in mine, Ive got fibromyelia, its taken me 30 years to get a diagnoses, in the last 3 years Ive struggled to get the help I need,

Im not a benefit cheat, but Im treated as one, Ive gone through the ESA process, Ive had a medical by ATOS I got 6 points for not being able to walk But deemed fit for work, who wants to employ me if I cant walk.

Then the debacle thats called DLA, it took 12months to go to tribunal, were I was treated like a mass murderer,I had all the evidence I was ill, I have a social worker, I have an OT assessment, all medical evidence,but still I was called a liar.

My youngest daughter is 13, and has now been accepted by Dr Barnardos on the young carers program, shes been put in level3, a level for those in need of the most help, shes watched me struggle for 3yrs, shes bathed me, shes wiped my backside, shes watched me have seizures, and thought I was dying. Im being given all the help I need by social service,Im in the process of getting a blue badge, but still Im not ill enough for DLA,

So with the greatest respect I suggest you look into how people like me are treated and give us not just our dignity back but our life

3 Replies

Sorry to read how you have been treated by "the system". Have you contacted your MP about this as well? The Condems are a farce & totally out of touch with reality and the real world.

The Prime Minister, a millionaire, claimed DLA for his disabled son. I'm sorry to say but I often wonder if his son had survived his disabilities would Mr "we're all in this together - not" still have pressed ahead with all these changes.


Hi Lally. I am sure you must be feeling so let down by it all and I am not surprised at all. I was just wondering if you have appealed the decision for the ESA ? It doesn't seem right at all if you only ended up with 6 points when you clearly are having a lot more difficulties than that and that is born out by the fact that your daughter has been admitted onto the young carers program. Do you get help from others when you fill in DLA forms? I know from experience with friends that sometimes it is the way they have answered the questions that has led them to be dismissed because it did not give a true picture. I am thoroughly of the belief that when you are asked by either dept if you can do this or that and the answer is you can on a good day that the answer to the question is then NO because the question is can you do it and not can you do it every day. I am sure some people will disagree with me but it is the only way to get your point across that you are not able for so much of the week or month or whatever to cope with sitting for long or standing for long or even getting yourself on and off the bed or like you said wiping your backside and I can quite honestly say I have had to have help with that many many times over the years from my husband because of not being able to make the movement because of muscle spasms and stiffness and at the end of the day when you are at work who is going to come to the loo there and help you. I also have terrible problems with my bladder and some days I have no warning time at all of needing to go and by the time I have tried to get myself up off the chair it is all too late so my answer to whether I have incontinence of the bladder or bowel will always be yes I do. Sorry if I have said things you already know as I would never want to make you feel like I am trying to teach my granny to suck eggs. Do not give up on trying to get what you obviously need. Hugs from Suzy xx


I had help from CAB to fill in one dla form and the local finance from our council I still couldnt get it, being my daughtet has been placed on the dr barnardos group i can get help from community legal team


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