How much evidence do they need?!?!?!? — Scope | Disability forum
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How much evidence do they need?!?!?!?

Sdag1973
Sdag1973 Member Posts: 11 Connected
Hi.
Just joined for some advice. I know these things have been asked probably a million times so please forgive me. 

I've had an ileostomy since 2016, an emergency procedure. Since then I've been in and out of hospital, sepsis several times, 18 major operations, full abominable restructuring, proctetomy, critical care coma, etc etc. Still have huge inoperable parastomal hernia, arthralgia which is being treated, PTSD with counseling referral etc. I had a PIP assessment recently and although I've not had a decision yet I have received my copy of the report and as I'm sure you'll all expect, it is full of inaccuracies and not a reflection of what was said at the meeting at all, which was a home assessment. It even says I haven't been in hospital in the last 12 months when I was in hospital in September through to November and had 7 emergency operations including sepsis and being in critical care an hour from death. That is just one of the major errors. It says I was relaxed and in good spirits, I was in tears..... points recommended are 2 overall even though at one paragraph it says I need help getting in and out of the bath but on the tick sheet it says I can wash with an aid so 2 points. When I sent my forms off I sent loads of letters and assesment reports from my hospital stays, my rheumatology specialist, Crohn's nurse etc etc which shows I have all these conditions and all hospital stays. I'm lost basically as to how all the evidence can be ignored and will the decision maker just go along with the report even though they already have reports to the contrary of what was said? 

If you've made it to the end of this post I thank you for your patience ??? 
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Comments

  • anisty
    anisty Member Posts: 173 Pioneering
    Hi i can only answer a bit of your post about how your evidence can be ignored.

    It is because pip isnt based on a diagnosis. It is crucial to understand the descriptors and to show how your disabilities affect you.

    Just stating the names of your diagnosis/s doesnt give the assessor any information on how they impact your ADL. You need to paint that picture for the assessor.

    Others will be able to add to this and answer your other points
  • Sdag1973
    Sdag1973 Member Posts: 11 Connected
    @anisty thank you for your reply. The letters etc from stoma nurse, counselor, rheumatology specialist, surgeon all state what happened and how my conditions affect me along with how they will carry on affecting me. That's why it seems bizarre that this seems to have been ignored. Before the major surgeries which have left me in a worse state than before, I've spent 27 years explaining how invisible chronic illness affects my daily life. That's what I was saying in my post. In my assessment I was in tears explaining how my PTSD make me feel and stops me carrying out normal activities, the assessor says I was focussed and in good spirits. My partner explained how she helps me in and out of the shower, the assessor has written this but then ticked the box that I do not need help. There are things she says which do not match the box ticked. This is my confusion. I read all the advice and explanations before applying. 

    Thank you. 
  • anisty
    anisty Member Posts: 173 Pioneering
    It isnt just saying how your disabilities affect you - it is understanding exactly what each descriptor is getting at. Im not an expert on this by any means but will tag @poppy123456 and @mikehughescq who will be able to answer your post fully.

    The way your answers on the pip2 are worded need to show how you are affected with specific reference to each descriptor.
    And that can be difficult to do - it's not about having lots of medical evidence; it's about picking out your evidence very selectively with regard to each activity.
  • Sdag1973
    Sdag1973 Member Posts: 11 Connected
  • Sdag1973
    Sdag1973 Member Posts: 11 Connected
    @anisty thank you for your reply. 
    I think what confused me is that I supplied letters from the specialists explaining how the conditions affect me daily plus the health assessor has written in the notes things like, needs prompting to drink which causes his dehydration and effects his fatigue making activities difficult, but then they've ticked I can take nutrition without prompting. Says on some days I cannot leave the house and if walking 200 metres would need to stop twice to rest due to pain, then ticked I can walk 250 unaided. It's filled with these conflicting points thats thrown me. 

    Thank you

  • anisty
    anisty Member Posts: 173 Pioneering
    edited March 2020
    You will need to look back on your form. The 'needs prompting to drink' one is quite specifically aimed at people who cannot get physically get nutrition to their mouths (either because they have a physical condition affecting their ability to hold a cup or perhaps a cognitive disability which causes them to lack any drive to drink)

    You will need to specifically say WHY you are unable to take fluid and food to your mouth by yourself without being reminded. If you can eat without being prompted, what specifically is it about drinking?  Are you able to take enough fluids throughout the day, are you choking, are you at risk of aspiration? Do you get chest infections from choking? Are you on laxitives due to constipation caused by lack of fluid?

    Are your lips cracked and dry (if you need to apply creams to your skin/lips for moisture, it would be relevent to reference here) have you been hospitalised for dehydration? Very relevent if so.

    Who prompts you? If you live alone, be sure to say how often someone is with you to prompt you. Think about what would happen without someone there to prompt you. Has that ever happened, that no one was there? Write about that time.  Does thirst ever kick in, is it your medications that take away your thirst drive? Or something else? 

    Would you have the ability to set a timer to remind you to drink regularly? 

    Have a real good think about exactly what would happen if no one reminded you to drink. What stops you from drinking yourself. And does it affect eating too? If it really is just fluids, you will need to explain that very specifically as if talking to someone with no medical knowledge. Dont expect them to automaticallt fill in the gaps. An obvious reason to you will not be obvious at all to them!


    So this question is about your ability to actually get nutrition into you reliably and in a reasonable time.


    If the reason you need prompting to take fluid is because you cant make yourself a cup of coffee, cant turn on a tap, actually get a drink ready for yourself - well im not sure that can score points at all because the prepare a meal one is to prepare a cooked meal comprising 3 fresh ingredients once a day. I dont think there is any scope to score there on not being able to make a drink.


    This is why it is so important to understand the descriptors.


    Remember also if you need prompting to eat and drink, the assessor will likely be expecting to see a very slim person at f2f!!!  I dont mean to be cheeky, but if you are a good size, they might view that as being inconsistant with needs prompting to take nutrition.


    Just a few things to be wary of. 

    *  I havent got the experience and knowledge of mike and poppy. I am not disabled myself but act on behalf of my son. I am only aware of the things that can trip people up from reading around guides and forums.i hope i have the gist of the way to answer this question correctly but if mike or poppy come in here to correct me, it is them you should listen to*
  • Alice_Holt
    Alice_Holt Member Posts: 46 Courageous
    OP - As anisty and mike say, the focus is on the activities and descriptors, not your diagnosis.
    PIP looks at the help you need to reliably achieve those PIP descriptors.

    Here are the PIP descriptors:
    https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

    This gives an idea of how the PIP descriptors should be interpreted:
    https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/831253/PIP-assessment-guide-part-2-the_assessment-criteria.pdf

    Looking at this information will help you better understand the PIP criteria.

    Also think about how fatigue might affect you doing other PIP activities reliably (including in a reasonable time scale) for the majority of the time, and the variability of your fatigue over the course of a day. Are there periods in the day when your fatigue might stop you doing an activity to an acceptable standard, so you can't do them as you might reasonably require without help or aids. 

    Some of the guides on the sites I've linked to explain this much better than my attempt.
    You may also wish to get advice from your local advice agency.



    If you need to appeal, here is a good guide to the process:
     https://www.advicenow.org.uk/guides/how-win-pip-appeal

    And:
    https://www.gov.uk/mandatory-reconsideration
    https://www.advicenow.org.uk/pip-tool
    https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/mandatory-reconsideration/
     
         
       
  • woodbine
    woodbine Member, Community Co-Production Group Posts: 7,721 Disability Gamechanger
    Hi when you get the decision you should ask for an MR (mandatory reconsideration) which means that someone else at the DWP will look at the decision, this can but often doesn't lead to a change, the next step is to appeal.
    Its worth noting that PIP isn't paid for the conditions you have but the care and or mobility issues that arise because of them and that often sending too much "evidence" that doesn't relate to this won't help.
    Good luck
    Be extra nice to new members.
  • skullcap
    skullcap Posts: 169 Connected
    anisty said:
    It isnt just saying how your disabilities affect you - it is understanding exactly what each descriptor is getting at. Im not an expert on this by any means but will tag @poppy123456 and @mikehughescq who will be able to answer your post fully.

    The way your answers on the pip2 are worded need to show how you are affected with specific reference to each descriptor.
    And that can be difficult to do - it's not about having lots of medical evidence; it's about picking out your evidence very selectively with regard to each activity.
    Are you sure?
    I can find no such advice or instruction on any of the PIP forms that tell you that it must be completed in that manner.
    You are simply required to explain what your issues are with relevance to the questions asked and it is for the DWP to decide if what you describe entitles you to points. 
    As for  handing over selective medical evidence, you do realise that if your claim ends up at a Tribunal they may well ask you to supply all of your medical files from the GP including letters/reports etc that are not helpful to your claim.
    Just be honest when filling out the claim forms and not try to fit what your problem is with a descriptor.
  • poppy123456
    poppy123456 Member Posts: 31,186 Disability Gamechanger
    skullcap said:

    Are you sure?
    I can find no such advice or instruction on any of the PIP forms that tell you that it must be completed in that manner.
    Now where have i heard this before? Why on earth would a form give you instructions on how to fill it in?
  • anisty
    anisty Member Posts: 173 Pioneering

    @skullcap no im not sure of anything!! That is why i added a 'disclaimer' at the bottom.

    I think, though, what i am trying to say about selecting evidence to fit each descriptor has come over wrongly. I really just mean it helps to properly understand what the descriptors mean.

    I had no idea when i filled my son's form out and made a real hash of it. Luckily, it seems the assessor has taken the time to sort it out.

    On the nutrition one i had put that my son lacks drive to eat and needs prompted to eat some meals.

    That scored nil with the comment that my son has no physical disability with his hands stopping him getting food to his mouth and some of my info from that section had been moved over to the prepare a meal section.

    For understanding language, my answer was totally disregarded and they had turned to the report i provided and called his support worker because i had totally confused that question and put info in there that should have been put into the mixing with people section.

    Yes i answered honestly but i think we were lucky in having an assessor that has taken the time to get the info i provided onto the correct descriptors.


    I dont mean to suggest that anyone hides evidence or exagerate any evidence at all.  Just that there is no point reeling off a list of prescription medications and surgeries it is of no relevance to the descriptor .


    And - no - im not sure!!!! This is just what i now think after doing my sons form all wrong. I think i could have given the assessor a much easier job but she has actually credited my son with points where i claimed none.


    So maybe your idea of just being honest is the best policy :)
  • anisty
    anisty Member Posts: 173 Pioneering
    Cheers @mikehughescq - I do think I am now thinking along the right lines when it comes these forms but I've had to get to grips with it only recently so im not totally confident. My knowledge is so new so your comment here is reassuring :)


  • skullcap
    skullcap Posts: 169 Connected



    @skullcap the advice given is spot on. DWP provide notes on how to complete the form. They are so off beam I advise claimants to throw them away. 

    I will also politely disagree with your assertion one should “ not try to fit what your problem is with a descriptor.”

    If you read the law (as opposed to the PIP 2 or the DWP guidance, neither of which are accurate reflections of the law as written) you may believe that actually your issue DOES fit the descriptors. Arguing that things come within the law because of how the law is worded as opposed to how the government or DWP think it ought to be interpreted is how precedents are set and how case law widens the interpretation. As with PIP so it always was with DLA. Left to just answer the questions on the forms or read the DWP guidance no agoraphobic would ever have deduced entitlement to DLA mobility at the lower rate. Cases were taken by two reps on behalf of three claimants who argued that the wording of the law itself did mean they qualified. Case law was established and an accurate interpretation forced upon the DWP. 
    I won't argue on what you say other than to point out respectfully that you need not only to have knowledge of the case law but where to find it and how to use it.
    Not everybody seeks out professional advice and support even if it is available. The majority of claimants are at best 'self taught' welfare advisors which I believe features Poppy on this site..

  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    @skullcap....this is one of Yadnad's favourites....and Gruber ..

     I'd advise whenever you're applying for anything you need to find out what the criteria are and what they are looking for. No-one would applying for a job without doing this - 

    PIP is no different - there's no point in filling out a form without researching what is needed and framing your application around the activities and the descriptors that the DWP use.
  • poppy123456
    poppy123456 Member Posts: 31,186 Disability Gamechanger
    @skullcap i'm not a welfare advisor.
  • anisty
    anisty Member Posts: 173 Pioneering
    Thanks again @mikehughescq I do love a bit of straight talking!

    And i would hate to be leading anyone up the garden path with wrong info.


  • cristobal
    cristobal Member Posts: 984 Disability Gamechanger
    @mikehughescq ....."If you want to know what the law is then read the law. There are many excellent guides to interpret that law. DWP guidance is not and never has been one of them..."

    Knowledge of the law is good but personally I think that knowing how the people who actually make the decisions interpret it is just as valuable, if not more so. If you know what the 'rules' that the DWP use (even if they are wrong in a lawyer's eyes) then you are more likely (in my opinion) to be awarded without having to go to a tribunal.

    You make a very good point however that some people might 'self exclude' and not apply because their condition doesn't meet the guidelines...

    Have a good day ...keep up the good work...
  • anisty
    anisty Member Posts: 173 Pioneering
    For anyone reading this who is getting panicked that it is just all too difficult and overwhelming, I can confirm that @skullcap's advice to 'just be honest' really can be all you need to do.

    I managed to get a paper based decision for my son by just being honest about what he can and cant do. And it seems to have worked out well for him.


    The evidence i included was 9 years old. Maybe we just landed lucky but, just to give hope to others, I just said how things were. No recent evidence available so i thought this old stuff at least proves i am not making the whole thing up.

    And posted it off. That can work too :)
  • skullcap
    skullcap Posts: 169 Connected
    @skullcap i'm not a welfare advisor.
    I know that and I never said that you were, I was just pointing out that you appear to be a 'self taught' welfare advisor given that you (a) never have a problem with claiming benefits for you and your family and (b) give important advice that seems to come from someone who is extremely knowledgeable.
  • poppy123456
    poppy123456 Member Posts: 31,186 Disability Gamechanger
    skullcap said:
    @skullcap i'm not a welfare advisor.
    I know that and I never said that you were, I was just pointing out that you appear to be a 'self taught' welfare advisor given that you (a) never have a problem with claiming benefits for you and your family and (b) give important advice that seems to come from someone who is extremely knowledgeable.

    May i ask how you know myself and another member of my family haven't had any problems with benefit claims? It's been quite sometime since i told my story here and certainly not since you joined here....

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