PIP, DLA and AA
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Not sure what to do PIP

anth22anth22 Member Posts: 58 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.

Replies

  • poppy123456poppy123456 Member Posts: 22,218 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.

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • janer1967janer1967 Member Posts: 9,104 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
  • anth22anth22 Member Posts: 58 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.
  • bekindalwaysbekindalways Posts: 79 Member
    @anth22 I put in a change of circumstances in September 2019.  I read horror stories stating and trying to influence others that I could lose everything.

    I went ahead because my illnesses had progressed significantly. I made sure that I used the descriptors and didn't solely rely on my diagnoses, but concentrated on how my health had deteriorated since I first applied for PIP in June 2017. 

    As a result, a home visit was arranged on jan 10. I tried to concentrate on her questions and didn't answer simple yes or no's although at times I was in a land of ny own and deep in thought.  My husband was there with me.  I received the report a few days later.  She had been honest and truthful in her nearly 2 hour assessment of me.  I was expecting inconsistencies on what was said I even told her I didnt trust her to be truthful given the inconsistencies on my last home visit.

    The upshot was I was awarded 18 and 22 points from 11 and 10 and received my award letter last week.

    Yes, you could do a change of circumstances and it will bring about another full assessment as if you were applying for the first time. Yes, a change of circumstances can bring about an increase/decrease or no award at all scenario. It can only be you that can make that decision.

    If you truly believe you should be reassessed, get some advice first ( I didn't because of a very poor law centre advice on my previous appeal and had to tell the tribunal that I had  pretty much sacked her on the day because she said I had no chance because of the 'eloquent letters and emails I had written to the DWP) Yes, they said I had good insight and my letters and emails showed that...  I simply told the Tribunal in tears that for my years living on this good earth, being disabled whether mentally or physically does not make me incapable of forming a sentence or paragraph, written or otherwise and it doesn't make me stupid. They found in my favour, there was no statement of reasons request from the Dwp.
     
    So try to take notes or a diary of how you survive from day to day, yes survive because the vast majority have to do just that... be honest with yourself and don't underplay what difficulties you have.... I undersell myself because I refuse to accept I am disabled at times.  I've learned to be honest within myself and i truly believe that a good assessor will see the difficulties you have.

    On my reassessment I offered to do the exercises... she point blank refused and noted why in her report.   

    So I wish you well.  There are not many forums online or information on good outcomes to a change of circumstances application.  I trust my journey gives you some hope that when things change.....  it is not all doom and gloom.  

    If you have any questions about my own change of circumstances please let me know.   

    Good luck and whatever you decide to do.... continue to be strong. Xxxx

     
  • CressidaCressida Member Posts: 770 Pioneering
    @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_ScopeChloe_Scope Scope Posts: 10,652 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.
    Community Partner
    Scope

    Tell us what you think?
    Complete our feedback form to help us to improve your community.
  • bekindalwaysbekindalways Posts: 79 Member
    @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....  if you are genuinely disabled and are totally truthful from the outset.....   then please do what I did.  I posted a long journey on another post of the same query.

    Make sure you discount your diagnosis and concentrate on how it impacts your life.

    Others who keep telling you different are both unhelpful and not fully informed. 

    Kindest regards

    Xxxxx
  • poppy123456poppy123456 Member Posts: 22,218 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

    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • mikehughescqmikehughescq Member Posts: 5,926 Disability Gamechanger
    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.  
  • skullcapskullcap Posts: 172 Member


    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.
  • mikehughescqmikehughescq Member Posts: 5,926 Disability Gamechanger
    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. 
  • anth22anth22 Member Posts: 58 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.
  • poppy123456poppy123456 Member Posts: 22,218 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.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • cupcake88cupcake88 Member Posts: 873 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 . 


  • poppy123456poppy123456 Member Posts: 22,218 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.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • cupcake88cupcake88 Member Posts: 873 Pioneering
    It’s very confusing so thankful for you @poppy123456 for all your amazing advice 
Sign in or join us to comment.