LUPUS UK

Worry regarding PIP

Hi I'm new to this board so please bare with me if I post in the wrong area or make mistakes !

I've signed up to the website as my daughter has recently ( well after almost 2 yearst of tests ) been diagnosed with Lupus .. she's a single mum of 1 and is 38 years old ... she has recently been assessed for PIP but had to attend herself .. I'm on holiday after surgery ( so it was much needed ) and my other daughter who has a 5 month old baby couldn't go with her either as she had to collect daughter with Lupus child from school .. she was a nervous wreck to say the least having to go at all , far less on her own ..

Anyway fast forward to the assessment and she gets a man , he asked if she completed the form herself and she was so nervous she said yes ... when in fact our local CAB filled it in for her .. he had her walking up steps , lying on a bed .. loads of things .. but her main worry is that she told him she completed the form herself ... any advice please on what she should do would be gratefully appreciated .. she has other health issues too including severe degeneration of her spine ..can anyone offer any advice please .. many thanks

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Hi - firstly sorry your daughter has all this to contend with. My experience of PIP had been zilch until very recently - when I applied, was assessed and heard yesterday that I had failed.

It is so hard to know how it will work out of course for your daughter. I said I’d filled in the form myself because I’m very literal and I did write it out - didn’t say I’d had CAB help either. As it happens the CAB man was nice enough but I’d never have dictated it to him because some of it, toileting and bathing for example, would be just too intimate!

I didn’t point out that I have to have baths rather than showers because I need to lie down and can’t stand, I need to use heat pads on my eyes in bath for gland dysfunction, I need the heat and the steam to breath better and get warm enough to even function.

But even if I had - would it have made a difference? I very much doubt it because my disease, Sjögren’s, is relatively unusual and too rare in the way it affects me 24/7 to fit in with the questions.

I wasn’t made to do much at all apart from squeeze her hand and try and tap my finger tips together. I failed this too because I said I could text and type but forgot to say only with a stylus.

She didn’t test my balance or measure my fatigue so how could she know that these were so awful that day that my brain was completely off kilter? I ran rings round myself effortlessly - answering yes where no would have been just as honest but resulted in much needed points.

The trouble is that our autoimmune diseases are so variable and we will often get so horribly nervous and brain foggy that we contradict what we’ve written or try and try to please them so second guess what might be the right answer.

At least that’s what I did and on reflection there’s a lot I said that I could have phrased differently or answered more affirmatively or negatively - both could equally apply depending on the day or hour or minute I’m asked. So I answered each question honestly according to my good days not my bad?? Crazy really but I was feeling so ill that I just wanted to go back to bed and just couldn’t think straight. My husband sat there powerless to intervene - knowing I was telling it as I wanted it to be not as it is!

As a very proud, literal sort of person I often tend to answer before my mouth and brain are synced - especially when I’m fatigued and dizzy.

But way the system and the form and assessment are all designed seems to be geared towards those with straight forward disabilities, not towards progressive diseases or chronic illnesses or both. Even with doctors letters and leaflets on Sjögren’s fatigue there was no way of fitting into the DWP boxes.

So all you can do is cross your fingers and tell her that, if she fails - as many do - then she may well win on appeal. This is what I’ve been told.

Unfortunately the whole experience made me so incredibly anxious and sick that I just can’t face appealing- nothing is worth putting myself through that again for. Anyhow I scored so few points that it would be too hard to now sound convincing.

I know that the DWP rely on people like me being made to feel this way in order to put us off applying again. So if she fails then tell her not to give up if she really needs it. It is designed to make us feel like failures and no one wants to feel a failure. But we fail because the system is failing us - not because we don’t deserve this benefit!

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Many thanks for your kind reply ! I'm really sorry to read of what sounds like a horrible experience for you !

My daughters assessor was previously a paramedic and seemed like a jobs worthy 😡... I think theses assessor are picked especially to make you feel vulnerable and nervous in the hope that you fail !!

Time will tell , but I've already told her , that should she be reused that she must appeal !!

Thank you again for your help , and I hope you find the energy soon to also appeal ! Life is difficult enough living with a chronic illness without added stress ..

Take care and thanks again x

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Hello GrannyG, and please firgive my brain fogginess. In terms of filling in the form herself, does that mean pen on paper writing herself, or someone else writing for her? I think the majority of us look for assistance in how to complete the form correctly ( the form really requires a PhD in form filling to get anywhere on your own). The assessor may have been wanting to know whether that was her handwriting, especially if she has problems with her hands. In my case, the form was actually written for me because of my hands, but the Welfare Rights Assistant made it clear on the form that I was dictating. I'm not making this very clear, but I think it may earn you an extra point for finding writing by hand difficult.

sorry I'm muddled. Hard to think straight with fireworks outside night after night, requiring the radio to be a high volume to help a very frightened dog. Hard enough to think straight at the best of times !

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Hi lupiknits,

Thanks for your reply ! This is the problem . The lady from CAB actually filled in the form form my daughter ! But at the assessment she got so flustered that when asked if she filled it in herself , she said yes !! When in fact she didn't .. we wonder know should she phone them up and tell them this or will that make things worse for her !!

She's totally stressed about the whole thing , obviously not good considering her condition ! So we really don't know what to do for the best !

Thanks again for your helpful reply

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Well I am also 38y with 2 small children and I previously had it when it was dla and I fill in the form myself??!!! I don't know what they mean? We can still write?! Why would they make an issue of that? X

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Sorry Sara, I maybe didn't make myself clear in my post ... She didn't complete the form herself . A lady in cab filled it in for her .. but she got so flustered at the assessment that when they asked her if she had filled form in herself she said yes ! So now we're worried that they'll say she lied about filling form in or that it will affect her claim in some way ..

It's all new to us and these forms etc are a law unto themselves 😱

Thanks for your reply ! All we can do now is wait !

Does anyone one the average waiting time for a decision?

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Sorry yes I misread it! That's what 2 kids and lack of sleep does to u! X

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Hi GG, hope I don't sound like I think she will be turned down, but CAB filled mine in, however my daughter had already typed all my answers out & saved them on my computer. These were then printed out & sent with the form, rather than all the writing. We were able to add to it if we had forgotton anything before it was submitted. In regard to her not disclosing the fact CAB filled it out, it MAY slightly put her to a disadvantage, due to the fact she is able to write long answers on her own, & doesn't need input & guidance from another person, do you see what I mean? that is not to say she will be penalised, I also included as many as 24 pieces of evidence to back up my statements, just in case it goes to tribunal, remember to include everything, even if you think it's irrelevent, as much as you can get (Drs letters, letters of appointments, everyone involved in her care.) I had to face mine on my own, I was awarded the highest for both mobility & care. It's not all over if they do turn it down, get CAB involved again for the tribunal, add everything I have suggested. Many people that have done this, don't even have to appear, they are awarded it just through the information they provide. Best of luck, I'm hoping it will be ok, hope this helps a bit x

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Hi Tracy, many thanks for your helpful reply!

She just can't believe that when asked she said she'd filled it in , when in fact it was cab .. she's still not sure if she should cal them up and explain that she was stressed and she just said yes without thinking .. she has other health problems including some major surgery to face shortly so I'm hoping that .. mr jobs worthy who assessed her will take all of this into consideration... but if she is turned down and has to go to appeal then we'll certainly do as you suggest !

I can't believe her appointment came in at a time when I wasn't available to go with her 😡

Thanks again for helpful advice !!much appreciated !

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Hopefully all will be ok GG, let us know! Take care x

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Just thought I'd let you know that my daughter got a mini statement at the ATM yesterday and noticed a deposit that she didn't know about ... on checking further it was from DWP /PIP... she hadn't received a letter or anything from them plus it's only a couple of weeks since her assessment .. so she called them and sure enough she has been awarded the standard rate of PIP for the care component but nothing for the mobility part ... she is awaiting the award letter to arrive sontbat we can at least see what points she has been awarded... imo she should have had mobility part too as she has real problems and terrible back pain ( she also has severe degeneration of her vertebrae , not connected with Lupus )

But for now we're happy that she has been granted PIP and will think about appealing for the mobility part once we know what points etc she's been given.

Thank youbagain for all your advice and reassurance .. it was much appreciated .

Ps ...we were totally shocked at the speed of things too , as the assessor said 6-8 weeks ..

regards

gg

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