Fibromyalgia Action UK

Personal Independent Payments Assessment, Tomorrow 23.4.15. Plus other things on my mind. Sorry I had a bit of a rant :(

Hi all,

I a going for my PIP assessment tomorrow. I'm a little nervous though.

I have asked my dad to come with me as I'm worried I may not understand some of the questions.

My dad did come round to mine about an hour ago telling me off saying I'm doing fraud with my PIP claim. As a couple of weeks ago I went out clubbing with a few friends for a birthday, someone has told my dad that I was jumping around making a t*t of myself and that I'm being fraudulent because I say I use a wheelchair. What someone (or who ever was spying on me) forgot to mention was that I had a seat next to me so when my legs were hurting me I would have a sit down.

My dad has now asked me if I took my wheelchair out with me when I went out clubbing, the reason being 1 the toilets are all upstairs and there's no lift and 2 when I'm in that particular night club I ALWAYS have a seat next me as my legs give way when I'm out.

Now my dad is now telling me that I am breaking the law because I have said that I use my wheelchair which I do when I need to as I have stated in my PIP form, but when I don't need to use it I try and walk, then have a break as and when I need to. Could anyone please telling me if I'm breaking the law or being fraudulent at all??

I have also put in my PIP form that I struggle with my social skills and I can't budget my money at all so my dad has to help me with that.

My flat is adapted for me, I have a bed leaver, a higher toilet seat (or as my friends call it, my potty lol), a bath lift, handrails in the bathroom, a higher sofa, which is on blocks so it's not to low, handrails at my front door (as I got my flat before I got my wheelchair so I use them to help pull myself out of my chair, I also hold on to them to steady myself when I'm on my feet), I have a trolley with two shelves that I put food and drinks of so I don't need to carry anything and I can just wheel them from the kitchen to the sitting room and lastly I have a purching stool in the kitchen which I use sometimes, the only problem with that is I'm tall and it hurts my back to sit on it and I end up hunched over when doing the dishes or cooking.

My dad thinks I'm just doing it for the money but I'm honestly not. I'm telling them that my circumstances have changed a lot since I started my DLA claim back in 2006. When I first made the claim my mam was alive and she helped me with lots of things now since she died in 2011, I have had to try and defend for myself.

The only reason why my dad is having a go at me about the PIP Claim is because his partner doesn't think I'm severe enough for it and she thinks I play on my disabilities to get attention which for me is extremely hurtful and upsetting to think my dad is taking her side on this. (My dads partner told me that she is ill enough for PIP as she has been told she can get it. But she doesn't want to apply for it. But according to her I shouldn't get it).

That's is why I don't want her there at the assessment incase she says something and then I don't get it. Which I think she is capable of doing that. Even though I didn't want to no her opinion on if I should apply for PIP she told me it. As if you do not want to no something she will tell you no matter if it hurts your feelings in the process.

He will shout at me like he did today about the night club subject of me jumping around that is my dads partner finding out some information and twisting it and instead on my dad asking me in a calm and gentle manner he shouts and raises his voice at me. I turned round to him today and said why are you talking to me like this there is no need to shout at me..... His response well this is how I have to talk to you to make use you understand what I'm saying to you, I turned around and then said why don't you approach me ask me instead of taking other people's word for it. I then get upset and start to cry because I doesn't matter what I say he will never believe me. I even told him to ask my friend who was out with me if I had a chair to sit on and he didn't say anything.

Now I'm pretty miffed about what my dads partner has done by spreading lies and now she wants to do something with me. But my sister, brother and I have noticed that my dads partner will only do things with me to score brownie point with my dad and it just so wrong and hurtful. All this time she says she cares and I feel like she is stabbing me in the back.

My niece was over a my dads the other week and I new he had someone coming over to speak to him so I thought if she is still awake and if it was a nice day I could take her over to the park. But my dads partner sat there and questioned me saying but I thought you needed a wheelchair when you go out, what happens if she runs off, I turned around and said I only use my wheelchair if I'm having a bad day and I'm not in any pain today, if Myla (my niece) runs off I would run after her even if I was in pain or not as I wouldn't put her in any danger. But no matter what I said she kept questioning me on everything about the wheelchair of Myla ran off would I be able to catch her. I then turned around and told her that Myla was out of her pram the previous week I was in some discomfort but I was pushing the pram to help my balance and was fine I didn't have to run after Myla as she was walking nicely next to me and the decided to hold my hand instead. When my dads partner was having a go at me I corrected her every time she tried to have a dig at me and in the end she stopped and I was calm at first but as she started to annoy me more and more I changed the tone of my voice so she new I was going sit there and let her talk down to me.

Oh I'm sorry I'm droning on and on.

I'm just so sick of her trying to have a go at me all the time.

I might speak to my sister and see what she says and thinks as the last time I had an argument with my dad about his partner I ended up saying to him and you all wonder why I have depression and thoughts of self harm and suicide when you all have ago at me and don't bother asking my side of the story and only takes his partners. It's funny as I get wrong for only listening to one side of the story yet that's what my dad does all the time.


18 Replies

Hi Susan

I am so sorry to read of the situation that you have found yourself in, and I genuinely hope that you can find some resolution and relief to these issues. There is a set criteria for what you can / cannot physically do on this count. Examples are being able to walk a certain distance or being able to cook yourself a meal. I would personally think that these are open to their interpretation as cooking a proper meal is different from sticking something in a microwave? Or being able to walk to a local shop safely is different from walking to a local shop?

I want to sincerely and genuinely wish you all the best of luck with your assessment.

All my hopes and dreams for you

Ken x

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Thanks Ken,

Unfortunately I was unable to go to my assessment as we could not find this place. Even my dad was very annoyed at ATOS as they couldn't give us good directions to the location for my assessment. One person told use to go to another place in Sunderland and then another send us bk to the location we started at.

In the end we had to rearrange the appointment again :(

So we will see what happens then xx


Hugs from someone who understands what it's like to have family shout at them for something they cant help.

As you're panicking about breaking the law chances are the opposite is true.

im autistic and struggle as well from time to time, today has been a bad day as well. Another Dr gave me a lecture because im on tramadol about "not getting everything that you ask for" which resulted in me crying for over an hour.

Also when you explain how your pain affects you mention low pain rather than no pain days to the PIP assessors. Also bad days and better days.

Hope your assessment goes well and your sister can help you tomorrow. Avoid having your dad or his partner at the meeting if you feel they will compromise your case.


Thanks Trekster22,

Didn't get to go to the PIP assessment due to not knowing where the location of the place was. So my dad has found the place I was suppose to go to called physio world I just need to find out if it's in the location they say it is.

Hope you get sorted too xx

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Hi Please dont get to upset over this, your dads partner to me sounds jealous of your for some reason, try to overcome the nasty comments they say to you. Nobody only you knows the amount of pain that you are going through and only you know your good and bad days, on my good days I feel as if I could walk the matharon then my bad days I can hardly get out of bed. I hope that your sister can attend with you to your PIP assessment please take care and Big Hugs and good luck Julia xxxxx

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My sister never used to understand it, until she studied it at university. Now she understands completely so when I was upset she was the one who is aware that I no my limits and to ignore my dads partner as my sister doesn't like her either.

It's funny tho u no my dads partner had fybromyalgia and yet u would think she would have a level of understanding. Xx

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I think you need to ignore these unhelpful people. They have no right to bully you. You're clearly trying to be somewhere near normal and adapting to life with fibro. It doesn't help with someone telling tales, too. There are mixed reactions to someone claiming (and getting) allowances whatever they're called, and we're not all scroungers. Sorry, your dad and his domineering partner need to get a life.

Shouting never gets a point across. It's just a symptom of frustration or inability to control something.


Sorry to read that you are not getting the support you need from your Dad. Are you sure that he's the right person to go with you for the assessment? Would your sister or brother or a friend maybe be a better person to ask to go with you? You really need someone who will be on your side. One of the problems with FMS is that you look ok and people are unconvinced by a disability that they can't see. Also, the symptoms tend to wax and wane, and you can guarantee that the day you have to go along and make someone believe you need help, is probably the best day you've had for weeks. I wish you luck with your assessment. Try not to let thoughtless and unkind people get you down...I know that's really tough but try to rise above it. Best wishes :)


Hi Susan. Sorry to hear you are having these difficulties with your family. My feelings on this are that your family do not really understand what you go through NOR are they understanding the PIP benefit or process. It does sound like your dad is genuinely worried that you may be doing something fraudulent and is therefore worried about the consequences of this. Let me put your (and his maybe) mind at rest.

PIP is assessed very thoroughly, but the questions they ask are easy. they simply want to know how your every day goes, from start to finish, and how your disability affects you. They want to hear about what you CANNOT do when you are at your WORST. To gain the PIP award you have to have more bad days than good, or more bad hours in the day than good, and the level of award depends on how many areas of your life your disability affects you.

It is NOT fraudulent to apply for PIP if you tell them the truth which for you might be that you struggle with several things every day, but that you do have good days where you try to make the most of the moment. You are only young after all, and having a disability shouldn't hold you back. You have adapted, and clearly have the support of the health professionals who have given you equipment to make life easier. But that doesn't mean that life is just peachy. you may still have alot of pain and difficulty doing something.

The assessors are trained to ask questions you get a good picture of your life. they are qualified medically and will recognise your difficulties as hundreds of others have the same ones. do not go in there thinking they are trying to catch you out, go in thinking this is a great opportunity to explain how your condition affects and restricts you.

Make sure you tell them EVERYTHING, even if it is embarrassing or personal, even if it makes you feel you are being a wimp. You do not get points for being brave.

This is JUST a suggestion, but how about going in there on your own? I say this as if you think your dad may not be completely supportive of your application, might he offer up less than helpful information to the assessor?

You're not doing anything wrong, the assessors would see right through you and you will not be allowed the award if you were being fraudulent, so do NOT worry- any award you receive is yours because you need it.

As for your family, I cannot speak for your dads partner, to me she sounds cynical and ignorant of your struggles, but your dad just sounds worried for you and doesnt want you to do the wrong thing. That's just him being a dad! Parents often shout out of frustration and lack of skill in talking to their kids. You just try get on with things in your life, and don't let this ruin your relationship with your family. You are independent and making your own choices about your life. That is really mature. Reassure your father that you would not even get to assessment point if they thought you shouldn't apply, and that you are doing this with or without his support.

Just a word of advice though. The assessor will want to know how far you can walk, and what aids you use,how often you need your wheelchair etc. Please tell them your WORST experiences in a day or week. listening to you talk about dancing a night club or pushing a pram around a park IS unlikely to convince an assessor that you need the mobility component of the PIP benefit.....just so you know! Good luck, i hope it goes well for you . x

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i disagree that the questions they ask are easy, for someone on the autism spectrum for example they can be very difficult to define. Also fluctuating disabilities or multiple disabilities can be harder to assess. The national autistic society wrote the document for assessing social needs because there wasnt any assessment criterion for social needs.

i do agree that the OP is a genuine claimant and needs someone more understanding to go with them to the assessment.


So sorry trekster22, i didn't realise Susan was autistic, I was trying to reassure her that the questions asked of her would be easy to answer truthfully from what she has explained on here about her conditions. I misunderstood as i hadn't known she was autistic, sorry.

But actually, i have multiple and fluctuating disabilities and found that if allowed to be answered thoroughly enough the questions aren't too difficult. They may not give the whole picture though. I tried to advise that. And i think it would be best to take a SUPPORTIVE person with you for the assessment, but better to go alone than go with an unsupportive person i feel. just my opinion.

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i also have to apologise because im only guessing the susans "social problems" mentioned in the original post that susan means "autism".

Totally agree with you that best to have a supportive person/friend than go alone without support.

im wondering if advocates can help with this sort of thing? eg disability charities.


I know nothing about the requirements for any of the benefits in the UK, but all of ZedT's Encouragement and


Sorry, didn't finish! ... encouragement and recommendations to you sound very wise. I would think the "hints" are quite smart and very helpful ...

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Yeah thanks :)

It's funny u say that as I may struggle with some things but I do understand and take in some words my dad says and words my dads partner says all the time. I didn't notice it until I thought about it later that day. Xx

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Actually, Susan, I was speaking of ZedT's reply to you above, but if you have considered some things from your dad as well as his partner from my comment, then perhaps it was helpful. I'm glad if it gave you pause to think ...

I wish you well and send gentle hugs ... hoping things go well in your application process.

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Hi - don't worry about the rant; we all need to rant sometimes. I had one yesterday when they b*****d me about yet again at the GP surgery. Usually I keep everything neatly under control but yesterday I just thought...its your responsibility to deal with this problem not mine and I just seemed to work! However, I think you need to try to calm yourself and look carefully at the real issue at the moment, which is your need to get a PIP award? It would relieve you of all the burden of this application and assessment and so on if you could find a professional person to do this application for you. The Citizens Advice Bureau do these applications in some areas and also online. Any connection with any professional should give a referral to someone able to do this application professionally for you. Your GP DOES have this information even if they do seem reluctant to get involved. Any Library or Gateway Community Centre. Go in anywhere like this and somewhere they will have some connection to a professional who can help you. This will lift the stress off you to some extent and these people do these applications all the time and know how to word them. How you word things is what its all about. I know it should not be so but it does seem to us that, if you make these applications on your own, ATOS will immediately presume you are able to cope. We think this also applies to the Assessment. Turning up alone or without a professional with you we think will be noted down. Also remember that the whole of the Assessment Centre will be rigged with cameras. I know someone who lost his ESA because he walked through an awkward set of revolving doors OK and they said that he was therefore fit for work and showed him the footage. He has had the top of his head blown off by an exploding lorry tyre and will never be able to work again but they pronounced him fit for work. It was overturned on appeal - what a waste of public money! This is not an easy application for PIP but do not give up when you are entitled. I am still waiting the result of my assessment last Tuesday. This whole application has made me so unwell mentally I was nearly suicidal but remember there is light at the end of the tunnel and never give up on what you are entitled to. I am thinking of you.

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Thanks for the tip re: getting someone to help with the form filling. i have always had help with filling in my forms because my writing is dyslexic and illegible due to EDS and fibro pain.


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