Hi, I'm Firebird062! How do I inform PIP about my new diagnosis?

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Firebird062
Firebird062 Community member Posts: 4 Listener
edited March 2023 in PIP, DLA, and AA
Hi there. I'm currently in receipt of PIP for Fibromyalgia, CFS/ME amongst other conditions with light touch reviews. I was diagnosed in Aug with Breast Cancer had an operation in October and started Chemo in Jan this year. The side effects are devastating. I'd forgotten about letting them know about my new diagnosis. My question is do you have to fill the whole massive form again or will it just be the review smaller version form and do I have to put everything on it again or just my cancer diagnosis?

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  • poppy123456
    poppy123456 Community member Posts: 57,304 Championing
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    A new diagnosis is not a change of circumstances that needs to be reported because it's not about a diagnosis. If you already have a maximum PIP award then there's nothing to report because even if you could score more points, you can't have a higher award.

    If you don't have a maximum award then you need to look at the descriptors to see if you could score more points for a higher award. A diagnosis doesn't automatically entitle you to more points, same for a wosening of health condition.

    If you report changes you will be sent the PIP2 form to fill in and return with all your supporting evidence and another assessment is most likely.
  • Firebird062
    Firebird062 Community member Posts: 4 Listener
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    Thank you for your reply. I receive Standard daily only. The effects of not having physio until 16 & 18 months after the fall have impacted on my mobility added to which chemo is affecting my joints and also mobility hence why I thought I may need to let them know? I knew it may lead to new assessment wasn't sure if I would receive the full version form or just a review form for adding new conditions. 
  • poppy123456
    poppy123456 Community member Posts: 57,304 Championing
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    It's the full form (PIP2) if you're going to report a worsening of condition then you will need to make sure you put all the details on the form, for all of your conditions.
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,715 Championing
    edited March 2023
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    Hello and welcome @Firebird062 How are you keeping today?

    I'm sorry to hear you're going through breast cancer treatment. I remember the impact side effects had on my own mum, and it was a real tough time. Do you have a good, robust support system around you?

    To take some of the pressure off worrying about form filling, I'd recommend contacting a welfare representative near to you via the Advice Local website (just enter your post code, select welfare benefits from the drop down list and scroll to the bottom of the following screen).

    Wishing you all the best as you go forwards and remember where we are if you fancy a chat or to ask any other questions.

    PS, I moved your thread to our PIP, DLA and AA category and amended the title to help others find it more easily :)
  • Firebird062
    Firebird062 Community member Posts: 4 Listener
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    Thank you @Cher_Scope. Yes I have a good support system around me neighbours and friends, plus McMillan Nurses. I only realised the other day that I hadn't let anyone know about my fall - the reason that came to mind was because I can't have any treatment for the miniscus tear in my knee until all treatment has finished as it would be steroids first and then possibly an operation. The side effects of the chemo mixed with not being able to have proper physio on my ankle knee and hip (only 1 session each on ankle and knee since my fall in Feb 2021) are causing me real mobility issues. Plus I need to register my Cancer journery for future reference. My BC nurse is away until Monday and then I plan to speak with her about this see what she says and in the meantime I will scan all my appointment letters, treatment plan etc if letting PIP know is the best way forward. 
    Unfortunately, the NHS backlog since the pandemic is creating more disabilities in people due to lack of physio appointments. It took 16 months to get one after my fall which was supposed to be for my ankle, knee and hip but because of the time the physio took on my knee there was no time to treat the other two areas. By the time I was seen for my knee another 4 months later I'd had biopsies on my tumors and was waiting for the results which is when the doctor advised me that I wouldn't be able to have treatment on my knee until after all chemo and radiotherapy was finished. Basically I have to put up and suffer by which time there will be even more damage... Cancer - the gift that keeps on giving. 
    My head is so mashed I can't even think straight with regard to completing a whole new form Chemo brain is no joke. I just don't want to get in trouble if I haven't reported something that I should but then the other part of me wonders if as I have ongoing Standard daily whether I should just wait for my next light touch review and report it all then??? Touch much to think about. I do believe it should be an easier process than this... I can only dream 
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,715 Championing
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    @Firebird062 Ah dear, that sounds like a lot. The fall out of the pandemic and delays to be seen are continuing to be felt aren't they? I'm sorry you've been impacted so much.

    Please do consider letting a welfare representative do some of the leg work for you (so to speak!). They could look at your circumstances in more detail and consider whether you would get enough PIP points for an increased award.

    Also bear in mind that although medical evidence is useful, in the case of PIP, anecdotal evidence is more illustrative and impactful of how your particular conditions impact your ability to complete the PIP activities. So, consider providing 2 or 3 detailed accounts of the last time you tried one of the PIP activities, including who was there, where it was, what the activity was, what the difficulties were and how others had to assist you to complete the task reliably. 

    Remembering that unless you can carry out an activity reliably, that is safely, to an acceptable standard, repeatedly and in reasonable time then a particular descriptor can't be satisfied.

    I know it's an awful lot to take on, especially with a chemotherapy brain fog, so lean on others to help you through  <3
  • ladyluck
    ladyluck Community member Posts: 69 Contributor
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    @Firebird- wishing you all the best. You’ve really had a hard time. 
  • Firebird062
    Firebird062 Community member Posts: 4 Listener
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    @ladyluck Thank you so much x