Fibromyalgia Action UK

Grrr pip!

Hi everyone, hope you are all well

That dreaded brown envelope arrived today and I could scream, only 6 points for care and a big fat 0 for mobility.

The decision makers comments were aload of crap, totally made up, said on it, you said you have trouble taking nutrition but you dont look malnourished haha well that is crap because I actually stated that I dont have any problems with taking nutrition.

Dont know what to do now, feel totally cheated and as if I've been made out to be a total liar 😢

Sorry to rant x

13 Replies

Oh i feel exactly how u feel about the whole PIP situation. I got 0 for both. Its unbelieveable wot we have to go through just to prove we are telling the truth.

big hugs to you



Aww thank you, 0 for both? That is shocking, have you appealed against it? I dont know what to do or who to go to for help, dont even know if I have the strength to appeal it to be honest 😢 feel so let down xx


Well i rang and asked for a reconsideration. So today i have 3 very tude messages left on my phone ftom a lady who works for PIP saying i had requested a call from a case worker to discuss my scores (this is true) and as i am not answering my phone sge id not going to waste her time and ring again but will send me a copy of my report to read. How rude. Are these people trained to put us off any claim because it certainly feels like that. I would advice you to ring and i hope you get s better responce.xx


Think I will ring tomorrow and ask for a reconsideration but will also go to my local CAB to see if there's anyone there who can help me out, I dont know the drill though, is this what I'm meant to do? Xx

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Definitely get to CAB as soon as possible and let them know you want to appeal but unsure of procedure. Hopefully they will do as they did for both hubby & me and phone DWP while you are there in the room to set the reconsideration / appeals process started. I think when DWP are aware you have CAB in your corner it's letting them know you have the help and support of others.

When you get your report go through it thoroughly and make notes of any errors/omissions. If you spot anything your GP or Specialist can back you up on ask if they will put it in writing for you.

Hopefully you'll get the DM to overturn the original decision in your favour!


I would advise you to keep notes of every communication you have with them. Include day and date, time, ask their name and their position, write down what they say and what you say.

They have been known to say that people told them they decided not to go through with an appeal or reconsideration request, when in fact you told them the opposite.

I have seen charities and benefits experts websites advising that you tell them in writing that you are unable to take telephone calls with these questions and information, as it is difficult to process or remember and take notes during a phone call, and you feel this is too important to risk losing track of those communications.

Something to that effect, plus the fact that you want to be consulting with a benefits advisor from CAB or another charity, for example. Sign and date. Send it to them.

I'm not saying you should do this, but I did it and it did help. They have to communicate with you in writing, and then you have a record of what they say and you can respond in writing or have an advisor phone them on your behalf so you have a witness.

I often get phone calls when I have just finally got to sleep after hours of pain. I am in no condition at that point to take a call which is of this level of importance, and which I might forget part of what was said, or even misinterpret who is calling and the purpose of the call.

If they phoned three times and left a message, you can always write that you regret you were taking a bath or had turned off your phone so you could sleep after being up all night with severe pain. These are the sort of things that can turn it around, I would think.

If they are expecting a person (even a housebound one) to always be available to accept calls, or even three calls, then they are not living in the real world.

I think they can sometimes take that to mean that you are not ill but out running about and doing things you say you are not capable of. hahahahaha

I don't even take calls from my doctor's surgery or social services on some issues, because I can't depend on myself to keep it all straight and my carer often has to book the appointment if she has to take me there, or accompany me.

It is good whenever possible to have someone with you. If that someone has a notepad and looks dressed as if they have a white collar job, all the better.

Then the benefits people know then that their attitudes, tone, whether they look at you, whether they actually did what they claim to do, whether you actually said what they claim you said, have all been written down by a third party. This worked quite well for me.

They like to try to intimidate you and infer things such as 'appears well groomed' when all you did was comb your hair, brush your teeth and pull on an elasticated waist pair of trousers. It may have required a great deal of energy and resulted in a lot of pain, as does getting there or having them interview you at home in a sitting room.

I have had them write that I failed to meet their gaze when they asked me a question, and make a remark which was thinly veiled to indicate that I must be lying.

In fact, I told them I had a severe migraine and was totally exhausted from the effort of getting ready to go and travelling to the assessment centre. I could not sit upright in the chair and could not keep my eyes open or focused. My head was drooping over to one side from exhaustion. So interpreted as lying. Had a third person been present taking notes, all of this would be written up and could be used in a request for reconsideration.

As ladycaz says below, you should send any letter via recorded delivery. They also told me once that they had received a doctor's letter for me. The following week, they said they never received it and that there was no record of it coming in. Later, when I pressed the issue it mysteriously appeared and they had it.

I don't trust them to do anything properly. I try to keep as much control over the situation and assume that it will all go wrong, because either they are hopelessly disorganised, or they are manipulative and dishonest. It doesn't matter which if it is going to mean you lose your benefits. So best to cover all the bases and do all you can to document every step along the way.

A good idea if you can is, after forms have been sent in, or more information has been given them, Have someone from a charity or a support worker phone on your behalf, even if you are in the room. Have them state their name and what organisation they are with or that they are your carer, if they are. They can say they want to make sure that all the paperwork has been received and put in your file. (Before your helper phones, give that person written info of all your personal details so they can answer 'security questions' and you don't even have to talk.)


That is shocking, that woman's bad attitude towards you, its not as if its her pocket the money is coming out of, jeez oh, some people are so nasty 😠 x

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CAB will help you out. Definitely go for the reconsideration, don't be put off by this woman. I read they have targets they have to meet, (although this is denied officially) What other reason could there be to knock you back like that.

My first application for ESA was refused because I could eat, drink and was not incontinent, never mind there is a lot of stuff I can't do. I didn't know eating and drinking and going to the loo qualified you for a job! It's madness!

Don't give up!!

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I know how you feel. I too had a decision letter that was a work of fiction. At first I cried and thought I was worthless. Then I got angry and decided to fight them. I requested a reconsideration however I didn't phone them I sat down and went through their decision letter with a fine toothcomb and then I wrote them a letter via Recorded Delivery. I find that if you actually keep a written record its easier, they cannot twist or ignore what you have said.

Good luck. Keep strong and don't give up the fight.


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I am so genuinely and sincerely sorry to read that you were unsuccessful with your claim, and please remember that you can appeal this decision. I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you


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Appeal in writing like ladycaz did.


i changed from DLA to PIP had my assesment at home last october, the nurse lied on her report, and i was disallowed pip, i rang and asked for a reconsideration, sent in medical evidence again and a long letter explaining what i could and could not do to according to the descriptors also wrote an email to my local MP, two weeks later i was awarded advance rate for care and mobility


It is unfair that so many people who are unaware or incapable of going through extraordinary efforts with appointments at CAB, letter writing and record keeping, are losing benefits and even losing appeals. A letter to an MP, I have heard, will not only in most cases improve your chances, but speed up the decision, as well. I do not know this first hand, as I have never done it. But I certainly will if they do not give me what I rightfully am entitled to. PIP rolls out to my area in June 2015. I just got DLA increased following a reconsideration a few months ago.

I had a soul-destroying encounter with benefits people interrogating me in a way that was extremely intimidating and rude, and keeping it up for over an hour in tribunal. My condition worsened significantly after that horrible ordeal, but I wouldn't apply for higher rate even when support worker told me I should. I lost 2 years worth of higher rate DLA because I felt I couldn't risk them lying and making a worse decision if I challenged them.

The next time, I got help from an excellent organisation, the local ME Association. (I don't know that there is similar one for Fibromyalgia) Because I am housebound, they came to my house, which saved me the agony and expense of lengthy sessions sitting in a straight chair at the CAB, plus expense of a carer's time to accompany me.

They still only gave me the low rates, but my advisor said I could get the higher rates I deserved, and she wrote a great letter with all the details for me, pointing out the faults in their reasons, as well as the fact that we are to be judged based on whether we can do things repeatedly, reliably and safely. The reconsideration decision came through with higher rates on both mobility and care. I was so glad I had done it

I will certainly follow all the things I now know when this PIP assessment comes up, because it is just too much stress and anxiety to wait and wonder what they are going to do or not do.


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