PIP, DLA and AA
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PIP and long COVID queries

itspersonalitspersonal Member Posts: 11 Listener
edited February 2 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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Replies

  • janer1967janer1967 Member Posts: 9,265 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 
  • janer1967janer1967 Member Posts: 9,265 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 
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 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.  :)
  • lisathomas50lisathomas50 Member Posts: 3,887 Disability Gamechanger
    @chiarieds there is a long covid funding in wales don't know if you have one in England 
  • woodbinewoodbine Community Co-Production Group Posts: 3,796 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.
    my advice is given freely and is correct to the best of my knowledge.
  • calcotticalcotti Member Posts: 1,250 Pioneering
    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.
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    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. 
  • chiariedschiarieds Community Co-Production Group Posts: 8,063 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.

  • woodbinewoodbine Community Co-Production Group Posts: 3,796 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.
    my advice is given freely and is correct to the best of my knowledge.
  • lisathomas50lisathomas50 Member Posts: 3,887 Disability Gamechanger
    Long covid clinics have been set up
  • woodbinewoodbine Community Co-Production Group Posts: 3,796 Disability Gamechanger
    @lisathomas50 yes they have thanks for adding that valid point.
    my advice is given freely and is correct to the best of my knowledge.
  • lisathomas50lisathomas50 Member Posts: 3,887 Disability Gamechanger
    @woodbine thank you  for that means alot 
  • itspersonalitspersonal 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
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    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. 
  • calcotticalcotti Member Posts: 1,250 Pioneering
    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.
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    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. 
  • itspersonalitspersonal 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_ScopeCher_Scope Posts: 3,404

    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 :) 
    Online Community Co-ordinator

    Want to tell us about your experience on the online community?  Talk to our chatbot and let us know.
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    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. 
  • itspersonalitspersonal 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
  • woodbinewoodbine Community Co-Production Group Posts: 3,796 Disability Gamechanger
    My choice would be "welfare rights"
    my advice is given freely and is correct to the best of my knowledge.
  • itspersonalitspersonal Member Posts: 11 Listener
    woodbine said:
    My choice would be "welfare rights"
    Thank you, I think that is who I picked. 

    They didn’t seem to have their own website. I had to apply on a gov website so not sure if I did that right. 

    I did get an email to say I had applied for help with benefits but it doesn’t say how long it will take them to get back to me. So it could be 1 day or 100 days 

    Hopefully that is right and it is welfare rights 
  • woodbinewoodbine Community Co-Production Group Posts: 3,796 Disability Gamechanger
    When I sort help with a very complicated benefits issue last year I emailed welfare rights and within 7 days somebody phoned me and he really knew his stuff and helped me get sorted.
    my advice is given freely and is correct to the best of my knowledge.
  • itspersonalitspersonal Member Posts: 11 Listener
    Hopefully they will be able to help me or at least say if I should bother putting in a claim. Thank you for your help @woodbine
  • mikehughescqmikehughescq Member Posts: 6,001 Disability Gamechanger
    If we’re talking about a local authority welfare rights service then there isn’t a public facing one in the country without a web page at minimum. Look within your Councils web site but bear in mind these things are sometimes given odd labels e.g. Stockport Advice is now the Help With Benefit Appeals service.

    The only exception to this would be if the service is second tier i.e. the public can’t access it directly. 
  • itspersonalitspersonal Member Posts: 11 Listener
    If we’re talking about a local authority welfare rights service then there isn’t a public facing one in the country without a web page at minimum. Look within your Councils web site but bear in mind these things are sometimes given odd labels e.g. Stockport Advice is now the Help With Benefit Appeals service.

    The only exception to this would be if the service is second tier i.e. the public can’t access it directly. 
    I think I got confused as I didn’t know welfare rights was run by authorities, I thought it was it’s own charity or company. 
    This is where I did my application which I think is maybe a welfare rights but it could be just they offer advice on a person’s welfare rights maybe? 

    https://www.salford.gov.uk/advice-and-support/welfare-rights-and-debt-advice-service/welfare-rights-advice/
  • itspersonalitspersonal Member Posts: 11 Listener
    I meant to update to say I haven’t heard anything yet but it has only been a few days so that is probably normal 
  • itspersonalitspersonal Member Posts: 11 Listener
    Hello, to update:

    A lovely gentleman from welfare rights messaged me this morning. He said the same about 9 months being difficult and might be problematic to evidence as long Covid is new. 

    He wants me to fill in a pretend pip form and then he will see if I need help but they are very long and it would take me a long time to do it once, let alone twice if I have to do it again for the real one. I can’t even focus enough to read the help sheet he gave me so I think I’m going to forget about it for now. May be next year there would be more understanding of long Covid or other people will have claimed for long Covid and hearing loss. 

    Or may be I will be better and it won’t matter. I really hope I am, I miss cooking or at least being able to smell my food, haha
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,954

    Scope community team

    Hello @itspersonal. It might be worth you explaining this to the person you spoke with at Welfare Rights as they may have other suggestions of ways they could help you or perhaps your partner could help with the form?

    If you feel you may be entitled it would be a shame for you to miss out because of difficulty accessing support. 
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • woodbinewoodbine Community Co-Production Group Posts: 3,796 Disability Gamechanger
    The only advice and can add is to break it all down into small chunks, read the help sheet over a few days and then try the "pretend" pip form over say a week.
    It's always worth a try @itspersonal
    my advice is given freely and is correct to the best of my knowledge.
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