Remaining politically neutral during General Election 2024


Under guidance from the Electoral Commission and Charity Commission, it's important that Scope remains politically neutral during General Elections.

While we understand that this period will see many passionate discussions and do not want to discourage open discussion, we cannot allow discussions which are purely intended to influence voting.

As ever, please make sure that your comments remain respectful of other people's opinions and keep to our online community house rules.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Not sure what to do PIP

Options
anth22
anth22 Community member Posts: 197 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.
«1

Comments

  • poppy123456
    poppy123456 Community member Posts: 56,915 Disability Gamechanger
    Options
    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.

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Options
    @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 Community member Posts: 197 Courageous
    Options
    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]
    [Deleted User] Posts: 0 Listener
    Options
    The user and all related content has been deleted.
  • Chloe_Scope
    Chloe_Scope Posts: 10,581 Disability Gamechanger
    Options
    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 Listener
    Options
    The user and all related content has been deleted.
  • poppy123456
    poppy123456 Community member Posts: 56,915 Disability Gamechanger
    Options
    @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

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • skullcap
    skullcap Posts: 169 Courageous
    Options


    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.
  • anth22
    anth22 Community member Posts: 197 Courageous
    Options
    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 Community member Posts: 56,915 Disability Gamechanger
    Options
    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.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • cupcake88
    cupcake88 Posts: 1,304 Pioneering
    Options
    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 Community member Posts: 56,915 Disability Gamechanger
    Options
    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.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • cupcake88
    cupcake88 Posts: 1,304 Pioneering
    Options
    It’s very confusing so thankful for you @poppy123456 for all your amazing advice 
  • anth22
    anth22 Community member Posts: 197 Courageous
    Options
    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_Alumni
    Alex_Alumni Scope alumni Posts: 7,561 Disability Gamechanger
    edited January 2022
    Options
    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

    Concerned about another member's safety or wellbeing? Flag your concerns with us.

    Want to give us feedback? Complete our feedback form now.
  • poppy123456
    poppy123456 Community member Posts: 56,915 Disability Gamechanger
    Options
    It's not unusual to need to have an assessment because the majority of people do. Paper based assessments are rare.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • anth22
    anth22 Community member Posts: 197 Courageous
    Options
    Thank you all for your replies think things just got to me yesterday and I just wanted to let off a bit of steam. I'm worried because I have to take 13 different medications and if I have to have a telephone assessment I'm not going to be with it 😫. Does anyone know what help I can get with this because the assessor might as well be talking to a brickwall.
  • poppy123456
    poppy123456 Community member Posts: 56,915 Disability Gamechanger
    Options
    If an assessment is needed and it's by telephone do you have someone that can sit with you and then you can put the phone onto loud speaker? Though you will have to speak for yourself during the assessment but just having someone there often helps.
    Same if you have to attend a face to face assessment, taking someone you know with you, will also help.
    I'm not aware of any advice agencies that will attend any assessment with you and even if there is, you will still need to speak for yourself.
    Some people find it helpful to make some notes before the assessment, which can help remind you of some things to say. When you filled out the form, if you didn't give some real world examples then you could do that before the assessment so you will have some answers in preparation.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • anth22
    anth22 Community member Posts: 197 Courageous
    Options
    Thank you for your replies yes I put all my medications on my renewal form and I also rang PIP a few weeks ago to inform them that some off my medications have been doubled in dosage since I sent my renewal form back.
  • poppy123456
    poppy123456 Community member Posts: 56,915 Disability Gamechanger
    Options
    You need to be careful about ringing them for things like this because sometimes they will take that as a change of circumstances. Doubling your medication isn't in itself a change of condition that will affect your PIP award.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
Complete our feedback form and tell us how we can make the community better.

Do you need advice on your energy costs?


Scope’s Disability Energy Support service is open to any disabled household in England or Wales in which one or more disabled people live. You can get free advice from an expert adviser on managing energy debt, switching tariffs, contacting your supplier and more. Find out more information by visiting our
Disability Energy Support webpage.
If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.