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Pip and a extra condition do I add it. Help please.

willow80willow80 Member Posts: 3 Listener
Hi all, help needed please. I have a pip award till 2024 for my Lupus and other issues. But in 2018 I started having seizures they wasnt sure if I would have more but I did and have been told its Epilepsy I started medication back in 2018 and I'm still having seizures. I haven't told the Pip though. I'm so worried that I should have told them.  It's not on my claim. Should I tell them and risk what I have standard rate daily and high rate mobility. Or do I wait till my renew in 2024. Or will this be wrong. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi and welcome,

    I'm one of the community champions here on scope and i'm here to help and advise others.

    No because PIP isn't about a diagnosis. If you ring to add that condition onto your claim it will be classed as a change of circumstances and you'll be sent more forms. You will then be re-assessed and you'll most likely need another face to face assessment.
    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.
  • willow80willow80 Member Posts: 3 Listener
    Hi Poppy thank you for the reply. It's all so baffling as I know is says I'm to report and changes in circumstances. I was just so worried that they would fine me or something for not updating them. So it would be ok later on to add it in when I renew In 2024 the Epilepsy without them saying why didnt you tell us before. I dont think it would alter anything points wise to my award so wouldn't want to put what I have at risk either. Because the way my Lupus flares and health conditions effect me some are similar to that which I would been adding in for the Epilepsy some areas it would covering twice. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    It does indeed tell you to report all changes but this is very misleading especially for PIP. If everyone reported changes like a new diagnosis, change of medication then backlogs would be even longer than they already are. This means that a diagnosis is not classed as a change of circumstances.

    Yes, when it's your review just add the diagnosis onto the form and no you won't be fined for not reporting the diagnosis because it's not about a diagnosis.
    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.
  • androgynousandrogynous Member Posts: 46 Courageous
    edited January 2020
    willow80 said:
    Hi all, help needed please. I have a pip award till 2024 for my Lupus and other issues. But in 2018 I started having seizures they wasnt sure if I would have more but I did and have been told its Epilepsy I started medication back in 2018 and I'm still having seizures. I haven't told the Pip though. I'm so worried that I should have told them.  It's not on my claim. Should I tell them and risk what I have standard rate daily and high rate mobility. Or do I wait till my renew in 2024. Or will this be wrong. 
    Hi willow80

    Do be aware though, if you are still driving, you do need to inform the DVLA. You've said you are still having seizures?

    https://www.gov.uk/epilepsy-and-driving

    If you have an accident you could be prosecuted and it could invalidate your insurance.

    You’ll need to tell your insurer about your epilepsy for your motor insurance to be valid. 

    https://www.epilepsysociety.org.uk/car-insurance#.XhNIAyb7Tn0

    https://www.epilepsysociety.org.uk/what-driving-regulations-mean-you#.XhNIVSb7Tn0

    I know someone who had three TIA's whilst driving and their consultant had told them not to drive. They carried on driving and had two more TIA's whilst driving. It's not for me to get involved. It's your own responsibilty to inform the DVLA of your conditions. But it's not just what happens to you if you have an accident? 

    There are so many health conditions on the DVLA's list, it's a wonder anyone is driving at all?


  • willow80willow80 Member Posts: 3 Listener
    Thank you both so much for all the help. It's very much appreciated as I've not slept the last few nights with the worry that I had not informed them. Thank you for letting me know it's ok. On the driving side if things I stopped driving when I first become unwell with my Lupus so I dont drive at all. So hubby drives everywhere. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    In my opinion an increase in care needs doesn't mean you'll score more points. The words "all changes in circumstances must be reported" is very misleading here. especially for PIP.  It's pointless reporting a change of circumstances if no further points can be scored because reporting changes will always prompt them to send more forms and the whole process starts all over again.

    Not only that there's no guarantee that you'll be awarded anything as this can and does happen. People report changes and go on to lose everything they already have. You should always look at the PIP descriptors to see where you could score those points because it still may not be possible to score more points for a higher award.

    If of course someone's conditions has improved then that's different but even then they should look at the PIP descriptors to see if that improvement will affect the award they currently have because a condition that's improved also doesn't mean they are no longer entitled to PIP.

    In this case as advised, a diagnosis makes no difference to a PIP award so reporting changes for this doesn't apply.
    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.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @Thebluebadger Like i said, all changes must be reported is very misleading especially for PIP. Face to face expert advise should always be given before reporting changes.

    I'll make no further response to your comments. Enjoy your day :)
    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.
  • chiariedschiarieds Community Co-Production Group Posts: 8,105 Disability Gamechanger
    @willow80 - I've just noticed the replies you've had from Thebluebadger. Whilst this person happened to have their PIP letter beside them, @poppy123456 as you can see has done over 15,000 posts on here as against their 22. She has helped many hundreds of people in this community as regards benefits, including of course PIP.
    So, please be guided by her, & I apologise if the other has inadvertently caused confusion with their enthusiasm to join in a thread where Poppy had already given you excellent advice.
  • JulessarahthompsonJulessarahthompson Member Posts: 25 Connected
    I'm still awaiting a decision on my pip, although my report recommends enhanced on both parts. Since my assessment I have recieved a diagnosis for a heart condition. I havent reported it because the diagnosis itself doenst change anything for me or the care I need because I already suffered with symptoms when I filled the forms and had my assessment. The diagnosis is just another to add to the long list of health conditions i have. As poppy has said it's not actually about the diagnosis it's about how the condition affects you. if your diagnosis means your level of care has increased then tell them, if your level of care is exactly the same then you would be triggering a reassessment for no reason. But do be aware if your need for care has increased and you inform them, your not guaranteed a higher rate of pip, they could keep you the same or even remove pip. Ultimately it's your decision 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @chiarieds thank you very much my friend for your valued support here! Much appreciate.
    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.
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