Pain Needs Verses PIP: Hi all... - Fibromyalgia Acti...

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Pain Needs Verses PIP

sidsue profile image
5 Replies

Hi all.. I haven't commented for a while as I think all these forms for PiP are exhausting me, my brain is like a soaking wet newspaper screwed into a ball full of information and pictures but all mixed up and yep!! forgotten.. cant remember what people said to me, cant remember what I said to them. .My whole body is aching throbbing stabbing and hurting so much I feel like I have been through a Mangle .. I hope the young people here know what a Mangle is.. anyway.. my follow up from Reconsideration Mandate for PIP..I have been to see CAD who can only advise not tell you what to put.. The main one I was not given points for toilet issues.. but as a female I don't like to admit I do need help I usually hang on till I have to go upstairs as my Legs thighs are hurting the most at the moment...So I often have accidents or I might get there and really cant get off.. ( or finish what I started ) this can mean I miss phone calls or the post man..I am sure you all know what I mean ...I have a frame that goes over the toilet.. My granddaughter of 8 yrs thinks it is for her..she has autism and said thank you for the frame I can get up and down easier now.. if she only knew ! but I really don't like to tell people that I need assistance to go to the toilet but I have had to because of what my needs are to get pip. .Do any other Fibro men or ladies whatever your problems, feel embarrassed when we have to say 'we need help to go to the toilet or help putting Panties or underclothes on'.. Sometimes the pain in my lower back is so bad I cannot get dressed, why cant we just put it on paper ..why should we have to discuss these private things to these men or ladies who look at us as if we are lying ..have they no Mothers /Fathers or relatives.. that are ..as we are.. What is it to them if we do get help from the Government for our needs.. its not coming out of their pockets.. or is it they are only allowed to pass.. so many a day, or month ..I really don't know anymore why there are Government sites and paperwork to help you fill in the forms help to explain your needs .. then bang they refuse you...so you not only feel embarrassed now you are feeling totally drained again..

its sunny today I am sure I will feel better for a while hope you all are feeling the sunshine today.. x

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sidsue profile image
sidsue
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5 Replies
seren1970 profile image
seren1970

I feel for you I hated telling my life story to them just for them to say no it’s just not fare I hope you get what you hope for take care xxx

Greenpeace profile image
Greenpeace in reply toseren1970

Hi there,

I felt exactly the same as you when filling out my forms, but was advised to tell it exactly as it was, warts & all. You are not awarded PIP for your medical conditions, but how they affect you in your daily life.

It is embarrassing to discuss your needs to strangers, but unless you do tell it as it is, you will be turned down, or awarded a lower rate than you deserve.

So leave nothing out, tell the truth in detail so that it tells exactly what your needs are, along with how you feel about your change from being non-dependant on people or Aids, to how you are now.

Good luck.

GP. 😊😊

Angelcake1 profile image
Angelcake1

Hi I asked for help from the welfare rights but they can't help either, but they will if I need to appeal. Lady from welfare rights told me not to ask for a mandatory reconsideration ( I already receive pip at the standard rate) she knew nothing about me but I risked having the rate taken away.

I feel much much worse with the fibro on top of my existing conditions and feel they could not possibly take it away. Anyway I just completed the form and will post it tomorrow. Hoping for the best, I think it's wrong to encourage people not to apply without knowing the full circumstances, makes you wonder how anyone gets it in the first place ! Good luck with yours

rosewine profile image
rosewine

In the job I did before becoming ill I was used to filling in forms for other people. It is different when you have to fill them in for yourself and if you are honest with the details and then read it back you see the enormity of how your life has changed which is a very sobering and upsetting experience. With my PIP assessment she actually gave me 2 points in a section I had not expected to score in as I think she realised I was embarrassed to tell the whole truth.

I can remember seeing a programme a few years back about a GP who was so concerned about his patients being turned down for PIP that he signed on to train to be an assessor and he secretly filmed it. I can say I was a real eye-opener as if they gave too many people the award their assessments were gone over with s fine tooth comb to make sure they weren't being too lenient. It has more or less been proven that the companies are given some kind of quota to aim for. It actually seems like the luck of the draw as to who does or doesn't get it.

The trouble with the mandatory reconsideration is the whole thing is looked at again by someone entirely different and they can downgraded as well as increase the award so there must always that danger. I think the stats at the moment are about 65% of people who go to tribunal about a poor decision get the decision overturned in their favour.

Good luck with it.x

Hi Sidsue, yes I put it all down on my form. I'm just waiting to hear back from ESA..can't remember a toilet question but there was/is on DLA. At the end of the day the more help you need the higher care they give you. Good luck with the form x

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