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PIP and long COVID queries

itspersonal
itspersonal Member Posts: 11 Listener
edited February 2021 in PIP, DLA, and AA
I have two questions, one relates to me personally and one I just thought of while reading posts here.

One:
Is it possible at all to claim PIP for long Covid? I know it’s not about the condition but the effect of it BUT I notice one of the criteria is that it’s expected to last at least 9 months. No one has any idea how long my symptoms will last so even I have no idea. I hope it doesn’t but it’s been since May already. 

I can’t walk more than a few steps without being breathless and my chest hurting. I have terrible fatigue and now can’t help but sleep 12-15 hours a day. I’ve lost 6 stone in weight because I’m struggling with eating and preparing food. I’ve fallen asleep in the bath countless times, I can’t stand long enough to shower. I’ve developed all over body pain which the doctor said is likely to be myalgia. I have awful brain fog and lose track of what I’m doing constantly. The doctors have basically left me to it and said there’s nothing they can do but my partner has suddenly become my full time carer. 
Has anyone been successful in claiming PIP for long-Covid? I know it effects people differently etc so even if someone has no guarantee I’ll get it but I’m curious about the “expected to last 9 months” criteria, when no one knows how long this could possibly last. I was told a month or two to regain my strength and it’s been 3/4 of a year already. 


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Comments

  • janer1967
    janer1967 Member Posts: 15,112 Disability Gamechanger
    Hi and welcome 

    Sorry to hear how long it is taking you to recover 

    As for PIP I haven't heard of anyone applying on this basis but that doesn't mean there are not people who have

    I guess all you can do is try and see what the outcome is as you say it isnt the condition that counts but the effect that has on you . But yes there may be queries over how long it will affect you 

    Keep us informed as would be interesting to know to advise others 
  • janer1967
    janer1967 Member Posts: 15,112 Disability Gamechanger
    Hi and welcome 

    Sorry to hear how long it is taking you to recover 

    As for PIP I haven't heard of anyone applying on this basis but that doesn't mean there are not people who have

    I guess all you can do is try and see what the outcome is as you say it isnt the condition that counts but the effect that has on you . But yes there may be queries over how long it will affect you 

    Keep us informed as would be interesting to know to advise others 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    Hi @itspersonal - & welcome to this community from me as well. I'm sorry to read you are suffering from long- Covid & how much of an affect it has had upon you. I would think there is no harm in applying for PIP, & the process can take some time depending on the backlogs in your area, so it could potentially be some months before you would get a phone assessment anyway. Please do kindly let us know how you get on, thank you.  :)
  • lisathomas50
    lisathomas50 Member Posts: 5,498 Disability Gamechanger
    @chiarieds there is a long covid funding in wales don't know if you have one in England 
  • woodbine
    woodbine Community Co-Production Group Posts: 7,147 Disability Gamechanger
    I'm not sure if there have yet been any successful claims for PIP for "long covid" but there would absolutely be no harm in trying, might be an idea to speak to a local welfare rights unit and get some help with the application.
    Be extra nice to new members.
  • calcotti
    calcotti Member Posts: 5,289 Disability Gamechanger
    The problem of trying to predict how long a health impact is not unusual. Cancer patients having chemotherapy/radiotherapy etc often have no idea how long they will be be having treatment for. Often a case of treat, do more tests, review the response to the treatment, treat again with something else etc. Awards are still made but are likely to have shorter award periods because of the uncertainty about how the health impact may change.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • mikehughescq
    mikehughescq Posts: 8,845 Connected
    You have hit the nail on the head with your first post really. There are two issues. 

    1 - can you satisfy the forwards test?

    2 - do you in any event score sufficient points. 

    1 - will really turn on what your GP says about where they and any others think you will be in 9 months. Some people on here will be highly amused to see me say that.

    2 - I really don’t care for the “no harm in having a go” approach. Actually, there’s potentially lots of harm. Timing is everything. Repeat claims are rarely a good idea and this is the very definition of a case where you ought to seek advice before potentially wasting your own time and that of others. 

    Finally, I think the cancer analogy is unhelpful. Terminal patients get very clear and non-short awards via special rules whilst non-terminal patients rarely have any issue with the forwards test in terms of getting a prediction from a medical professional. The issue is what happens when that prediction is wrong. Neither are applicable here. 

    At the moment long Covid is a media construct. A name for a hugely diverse collection of symptoms. You don’t need a diagnosis for PIP but you will need a clear prediction. As the thing itself has been around for barely 16 months it really is going to turn on how brave your GP is feeling in terms of predictions. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 12,265 Disability Gamechanger
    I take onboard what has just been mentioned above, as Mike gives great advice, tho I might take issue with describing long Covid as a media construct, when NICE are obviously taking it seriously as I was looking at this earlier on. Please see: https://www.nice.org.uk/guidance/NG188    ....remembering NICE was mentioned not so long ago.

  • woodbine
    woodbine Community Co-Production Group Posts: 7,147 Disability Gamechanger
    Have to agree with @chiarieds about the use of the term "media construct", we've been there before and wrongly so with conditions that are now recognised as being very real and very serious.
    Be extra nice to new members.
  • lisathomas50
    lisathomas50 Member Posts: 5,498 Disability Gamechanger
    Long covid clinics have been set up
  • woodbine
    woodbine Community Co-Production Group Posts: 7,147 Disability Gamechanger
    @lisathomas50 yes they have thanks for adding that valid point.
    Be extra nice to new members.
  • lisathomas50
    lisathomas50 Member Posts: 5,498 Disability Gamechanger
    @woodbine thank you  for that means alot 
  • itspersonal
    itspersonal Member Posts: 11 Listener
    I realised I didn’t ask my second question but I can’t think of the words right now so will ask another time if that’s okay? It wasn’t relevant to this just a curiosity about something pip related.

    Thank you all who have answered me so far. The mixed feelings probably shows how difficult it may be because no one knows or can give me answers about my condition. My gp is not supportive at all and is only issuing 2 week fit notes at a time as he believes I could change at any moment. 

    I had hope he would be right to begin with but 8 months later I’m beginning to lose hope. 

    But with no ... I can’t think of the word ... presinct (?? sorry that doesn’t feel right but the word is escaping me right now, like historical other cases) I think it will be a hard fight to get awarded pip or any financial support.

    I like the idea of talking to an advice agency but do any offer advice by email? I’m hard of hearing and don’t do too well on the phone, thank you
  • mikehughescq
    mikehughescq Posts: 8,845 Connected
    chiarieds said:
    I take onboard what has just been mentioned above, as Mike gives great advice, tho I might take issue with describing long Covid as a media construct, when NICE are obviously taking it seriously as I was looking at this earlier on. Please see: https://www.nice.org.uk/guidance/NG188    ....remembering NICE was mentioned not so long ago.

    Er, I simply meant that it’s a name which, if you research it, was created by the media. It didn’t originate within the medical profession. The latter would perhaps ordinarily refer to such a disparate set of apparently unrelated things as a syndrome. The myriad of symptoms mean that as yet we don’t really know what it is other than very much real. 
  • calcotti
    calcotti Member Posts: 5,289 Disability Gamechanger
    itspersonal said:... I can’t think of the word ... presinct (?? 
    Possibly ‘precedent’.
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
  • mikehughescq
    mikehughescq Posts: 8,845 Connected
    Yes, I also think you’re thinking about the idea of setting a precedent. Nothing wrong with that. It’s to be actively encouraged where appropriate. I think there’s no right answer to be given here other than to focus on where you would get PIP points from in the first place before you worry about the forwards test. The latter is a moot point if you don’t score sufficiently in the first place. 

    To that end you need advice and, to answer your question, a good advice service should be able to offer you advice by email, text, WhatsApp etc. depending on how they’re resourced; where their staff are currently located etc. 
  • itspersonal
    itspersonal Member Posts: 11 Listener
    calcotti said:
    itspersonal said:... I can’t think of the word ... presinct (?? 
    Possibly ‘precedent’.

    That was the word I was trying to think of, thank you! 

    Yes, I also think you’re thinking about the idea of setting a precedent. Nothing wrong with that. 
    Oops I didn’t mean me setting a precedent I’m more of a sheep than a leader, haha. I was wondering that because there isn’t a precedent it’s probably more unlikely that I would be successful.

    I searched for some advice in my area and there were quite a few options. Does anyone know if any are more suited than others? 

    There is:
    Welfare Rights
    SUCRC (unemployed and community resource centre, it says they do benefit advice)
    Citizens Advice
    Mind benefits advice 
  • Cher_Inactive
    Cher_Inactive Posts: 4,412

    Scope community team

    @itspersonal The Advice Local website is a great web tool for finding free local independent advice.  If you enter your postcode and select 'Welfare benefits' from the drop-down list, you should be provided with a list of organisations.  Please keep us updated as I think it would help many people who browse our community, and perhaps don't post, who are in the same position.  Good luck :) 
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  • mikehughescq
    mikehughescq Posts: 8,845 Connected
    I searched for some advice in my area and there were quite a few options. Does anyone know if any are more suited than others? 

    There is:
    Welfare Rights
    SUCRC (unemployed and community resource centre, it says they do benefit advice)
    Citizens Advice
    Mind benefits advice 
    That sounds like you are perhaps in my area so I’d best not comment further. Entirely your choice. 
  • itspersonal
    itspersonal Member Posts: 11 Listener
    @itspersonal The Advice Local website is a great web tool for finding free local independent advice.  If you enter your postcode and select 'Welfare benefits' from the drop-down list, you should be provided with a list of organisations.  Please keep us updated as I think it would help many people who browse our community, and perhaps don't post, who are in the same position.  Good luck :) 
    Thank you it has lots of the same I found. 

    That sounds like you are perhaps in my area so I’d best not comment further. Entirely your choice. 

    Do you have experience of any of them? I went on my council site to request help but the form kept messing up as the buttons are in the wrong place. It said it submitted but I don’t know who it goes to and it didn’t send the confirmation email it said it would. Have you used it before? It asked random questions that I didn’t feel relevant so I left a lot blank too

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