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Not sure what to do PIP

anth22
anth22 Member Posts: 97 Courageous
About 7 months ago i was awarded standard pip for care and mobility i missed the enhance rates by 2 points on each i did not question it as i was happy to at least get something from my first time of claiming pip.
Just before xmas 2019 i noticed that i was starting to feel a lot worse and needed more help to cope which i now know is down to atrial fibrillation and a  tumour on my adrenal gland and a underactive thyroid gland, i get so much more confused and tired and sleep most off the time as im so washed out.
Do i have to tell pip that im so much worse or do i just keep it to myself even though i know when im assessed again they might find out from my doctor how much worse i am. I also wonder if it would be worth asking to be reassessed for enhanced PIP or would that be a risk not worth taking.
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Comments

  • poppy123456
    poppy123456 Member Posts: 28,499 Disability Gamechanger
    Hi,

    The term "all changes must be reported" is very misleading, especially for things like this. A worsening of condition doesn't mean you'll automatically be awarded more points for a higher award. If you reported the changes then more PIP forms will be sent to you and another face to face assessment is most likely.

    Whether you report the worsening of condition is your decision but do be aware that you could lose everything you already have by doing this. If you don't report the changes and decide to wait until your review then nothing will happen because you chose not report them at an earlier date.

  • janer1967
    janer1967 Member Posts: 15,203 Disability Gamechanger
    @anth22 Hello and welcome. It is entirely up to you if you put in a change of circumstances to notify of change of condition.
    When is your award due to end as you will automatically be re-assessed 6 months prior to end date so if that isn't too far away I would wait.

    You are at risk of losing anything you already have as a change in circumstances will trigger a new assessment.

     Remember it isn't about diagnosis of conditions its about how your condition affects you on a daily basis. 

    Review your last award and look at points you scored and if you think you would get anymore now, if not I would wait till your review, but that is just my opinion 

    Good luck with whatever you decide
  • anth22
    anth22 Member Posts: 97 Courageous
    Thank you both for your replies, i do not mind not reporting that im worse just was worried i would get in trouble not doing it. Im due to be reassessed in a year and a half so i will just wait.
  • [Deleted User]
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  • Cressida
    Cressida Member Posts: 976 Connected
    @anth22 please think long and hard before you decide and remember @poppy123456 is an expert advisor. Dont dismiss that good advice without doing your own research. Search the forum for others experiences. 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @anth22, sorry to hear things have got worse, how are you getting on?

    If you are unsure then I would recommend getting expert advice from AdviceLocal. The online community can offer you guidance, but we are not experts.
    Scope

  • [Deleted User]
    [Deleted User] Posts: 0 Connected
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  • poppy123456
    poppy123456 Member Posts: 28,499 Disability Gamechanger
    @anth22

    Hello again

    Just to let you know that, not only was my Change of circumstances successful, it was changed from 18 months, to 34 months then 5 years yesterday.... 

    In another comment you posted last week you said your award was changed to 2026 and said it was changed a couple of weeks ago. https://community.scope.org.uk/discussion/comment/306676#Comment_306676

  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    janer1967 said:

    ...

    You are at risk of losing anything you already have as a change in circumstances will trigger a new assessment...
    With all due respect this is really poor and potentially dangerous advice. 

    Is there a risk to a current award every time it’s challenged? Yes.

    What is the extent of that risk? No-one on a forum can possibly say. It requires either a long detailed phone call or face to face advice. 

    Okay then, what usually happens? In most cases the award remains unchanged. Sometimes it goes up and sometimes it goes down. Mostly it goes up.There are DWP stats available online which are constantly updated which will tell you the current state of play but they’re largely irrelevant to your case. Only a proper risk assessment of your case can truly tell you the extent of any risk. 

    Does it matter how close I am to enhanced rate already? No. There are cases who are on 11 points who will easily make 12 and cases on 11 which will never make 12. It really depends on the facts of your case.

    The numbers who challenge poor decisions are way below what they ought to be. Advising that they could lose everything is potentially scare-mongering and not borne out by the reality for the overwhelming majority of cases.  
  • skullcap
    skullcap Posts: 172 Connected


    The numbers who challenge poor decisions are way below what they ought to be. Advising that they could lose everything is potentially scare-mongering and not borne out by the reality for the overwhelming majority of cases.  
    Personally I would agree with you. But take someone that has not been able to access that level of advice.
    They start with nothing and hope to get the best award. The award comes through giving them something in the middle.
    Should they accept it and breathe a sigh of relief or should they ignore what was awarded and come hell and high water go for a bigger/longer award at any cost?
    Most claimants are thankful to get anything as that is more than they had before.

    Those who had a decent award previously or it is a new claim and the new decision is that they don't get anything will almost always go to appeal. They have nothing to lose.
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    I believe I’ve already answered the point. People who get awards that are, as you put it, “in the middle” are put off by scare-mongering talk about risk. Ergo, people need to think about the very real risk of posting anecdotal stuff as though it were evidence of something wider. 

    However, your post is anyway based on a fundamental fallacy around people getting lesser awards because they lack access to advice. Of course that is true in some cases but certainly not the overwhelming majority. 
  • anth22
    anth22 Member Posts: 97 Courageous
    Hi all i was hoping when my PIP review was due Dec 2021 i would be able to fill my review forms in explaining how much more help i need now due to worsening off my conditions. But yesterday i got a letter saying my PIP has been extended until Sept 2022 so i suppose im going to have to carryon until then to inform PIP im a lot worse and need more help. I know it may sound stupid but i wish my review was going to be on time.
  • poppy123456
    poppy123456 Member Posts: 28,499 Disability Gamechanger
    Just because your award has been extended it doesn't mean your review forms couldn't still arrive at anytime. There's been quite a lot of people that have had their awards extended only to receive their forms a month later.

    Having said that, you can also report a change of circumstances but do be aware that a worsening of conditions doesn't mean you're automatically entitled to a higher award.
  • cupcake88
    cupcake88 Posts: 1,234 Pioneering
    I have found this thread really helpful .I’m now doing trauma therapy and my meds have gone up so that is a change but I  won’t be telling them as I already have a higher for the daily living part so I don’t need to really tell them . My mobility hasn’t got worse so I don’t need to let them know bout that ,

    I don’t see the point in letting them know that my meds have been upped and I’m now doing therapy as it won’t make a different to my payment . 

    But if my meds are still up higher than they were at my assessment for my review I will give them a list of my meds and let them know bout the therapy then . 


  • poppy123456
    poppy123456 Member Posts: 28,499 Disability Gamechanger
    cupcake88 said:
    I have found this thread really helpful .I’m now doing trauma therapy and my meds have gone up so that is a change but I  won’t be telling them as I already have a higher for the daily living part so I don’t need to really tell them . My mobility hasn’t got worse so I don’t need to let them know bout that ,

    I don’t see the point in letting them know that my meds have been upped and I’m now doing therapy as it won’t make a different to my payment . 

    But if my meds are still up higher than they were at my assessment for my review I will give them a list of my meds and let them know bout the therapy then . 



    Even if you didn't have Enhanced daily living, a change of medication isn't really a change of circumstances that would need reporting. Yes, it says on all letters that a change of circumstances must be report, this is of course within reason.
  • cupcake88
    cupcake88 Posts: 1,234 Pioneering
    It’s very confusing so thankful for you @poppy123456 for all your amazing advice 
  • anth22
    anth22 Member Posts: 97 Courageous
    Just an update on this post I started, well I waited for my review form to come through which I sent back in November 2021 explaining how much worse I am now from my previous award in 2018 and also 72 pages off consultant letters and stays in hospital. I'm not going to get any better but I was shocked and saddened to be told by DWP I will need an assessment as far as I'm concerned it doesn't matter how ill you are and how much you struggle with life DWP do not care they do there upmost to push people to the edge of life. I want and I'm hoping to get a face 2 face assessment someone needs to feel the guilt for not taking the time to read my consultants letters explaining my serious health conditions and the care and help I need from others around me, sorry rant over.
  • Alex_Scope
    Alex_Scope Posts: 2,477

    Scope community team

    edited January 22
    Hi @anth22 I'm sorry to hear you'll be needing an assessment, I can understand how frustrating it must feel, especially hearing what you've sent to them. I feel the same about my condition, which is ongoing and very unlikely to change (as in lessen).

    What's good is, it sounds as though you've got a lot of detailed examples you can use as evidence against the PIP descriptors, which will give you the best chance of leaving assessors in no doubt at all about your entitlement to PIP. As frustrating as jumping through these hoops is, remember it's the examples that you give- as you say "the care and help I need from others around me", rather than just a medical diagnosis, which matter. 

    If there's anything else we can help with then please do say, but I hope you get the positive outcome you're looking for :)
    Online Community Coordinator
    Scope

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  • poppy123456
    poppy123456 Member Posts: 28,499 Disability Gamechanger
    It's not unusual to need to have an assessment because the majority of people do. Paper based assessments are rare.
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    It’s often been said on here that less is more and sadly this is a fine example. 72 pages of consultant report is about 70 too long. A consultant can talk about your diagnosis, treatment and prognosis. None of that says anything about how reliably you can perform the 12 activities and why should it? Hastiur consultant, for example, seen you on the toilet or doing some budgeting? Bathing? Cooking? It would be extraordinary if they had. 

    Your diagnosis won’t have been in dispute and nor will the treatment or prognosis. You could have written about those things yourself just the once without any input from a consultant and it would have been accepted without argument. 

    Your consultants can describe your symptoms but again symptoms don’t say much about how people reliably perform an activity. That takes you describing a recent attempt to bathe or whatever in detail. About half a page of A4 max for each activity.

    Your consultants can of course repeat what you tell them about reliably performing the PIP activities. That adds credibility as it’s consultants saying they believe you based on the medical stuff they know allied to what you tell them. However, that’s not medical evidence. It’s just a little above your partner writing something. All very nice but not really what’s being looked for.

    So, in that sense, no surprise at all you’ll be getting an assessment. What that’s telling you is that your claim lacks detailed anecdotal evidence to bring your claim to life. Lists of stuff like symptoms or meds. simply don’t do that. “I can’t get in the bath cos I’m in pain” is an assertion not evidence. Anyone could say it. 

    Equally, hospital stays say nothing. They could easily be read as “I went into hospital for treatment and that aspect of my health is sorted now”

    Concentrate on the anecdotal stories of your recent attempts to perform the activities. That’s where you get points. 

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