PIP form - Communicating and mixing with other people with severe fatigue — Scope | Disability forum
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PIP form - Communicating and mixing with other people with severe fatigue

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MissMarple
MissMarple Community member Posts: 187 Pioneering
in PIP, DLA, and AA
Filling out the daily living section of the PIP form and I'm feeling a bit discouraged. I have lung impairment, postural tachycardia and chronic fatigue. Among other symptoms this causes constant, severe fatigue that impairs my cognitive functions. Sometimes I'm too exhausted to even stay awake, or I'm awake but can't concentrate, can't find words,  just stuttering incoherently, can't understand what I'm reading etc. This happens if I 'overdo' things (which can be as minimal as having a shower). As long as I plan my activities and pace myself, I have a couple of mentally okay hours each day so I can get essential things done, but I'm limited in how long I'm able to maintain a conversation, what time of the day I am able to get engaged with people to begin with, and if I have to push through these limits (e.g. for a medical appointment), the symptoms get horrendous afterwards.
I believe the sections about communicating and mixing with other people should apply to me as I do need help to get things done. E.g. during my work capability assessment I was losing concentration after about fifteen minutes and needed a friend to repeat and explain to me what had been asked. It's very tiring trying to think of a way to explain my issues clearly with details and examples. I don't think I'll score enough points for an award for the physical activities as I manage the showering, dressing up etc. part, just about. Should I even bother, am I supposed to score any points in this section for the issues mentioned above?
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Thanks @Username_removed. I’ve looked at the link and I’m afraid I can’t say I’m much wiser about what they actually mean. 
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  • Cress
    Cress Community member Posts: 1,012 Pioneering
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    @MissMarple
    You say you don't think you would get any points on the physical descriptors, but if the likes of having a shower wipes you out then that surely means points...with chronic fatigue surely many things would be difficult for you?
    Have another think about each descriptor because sometimes you don't mention things simply because you're used to doing things without giving thought to how much of an actual drain it is on you.
    Good luck
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  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
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    Constant severe fatigue will affect most of the descriptors. Make sure you understand the concept of “Reliably, in a timely fashion, repeatedly and safely”
    https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Username_removed said:
    DWP think you can socially engage if you can say hi to the bloke at the till in your Aldi. It’s actually more to do with whether you could hold a long conversation with them and read every aspect of it correctly including body language; understanding different emotions; when you were or were not being spoken to and so on. 
    So is this more of a filter question for autism/learning disabilities and such? I always start a conversation with no issues then there's a steady decline until I get overwhelmed with fatigue, can't concentrate and have no idea what is said or how to respond.
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  • Cress
    Cress Community member Posts: 1,012 Pioneering
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    @MissMarple
    A diagnosis or reason why you can't do this isn't the issue, more so explaining what happens when you attempt the activity what difficulties you have.
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Cress said:
    @MissMarple
    You say you don't think you would get any points on the physical descriptors, but if the likes of having a shower wipes you out then that surely means points...with chronic fatigue surely many things would be difficult for you?
    Have another think about each descriptor because sometimes you don't mention things simply because you're used to doing things without giving thought to how much of an actual drain it is on you.
    Good luck
    I think I would get 2 points for preparing food and 2 for washing and bathing as I need to do them sitting down and with careful scheduling. I mostly live on prepared salads, ready meals, microwaveable rice etc. I don't even try to cook anything that needs any preparation more often than once a week because I just don't have the energy. But I don't feel comfortable claiming I 'cannot prepare or cook food' at all because I could, it just leaves me so exhausted that it is not worth it. I'd rather spend that energy on having a shower, reading my emails etc. But I couldn't engage with people for longer than an hour or two even if I don't do anything else at all all day, yet it seems I cannot get any points for that?


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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    calcotti said:
    Constant severe fatigue will affect most of the descriptors. Make sure you understand the concept of “Reliably, in a timely fashion, repeatedly and safely”
    https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

    Thanks @calcotti So, basically, if it causes overwhelming fatigue during or after the activity then I cannot do it because I couldn't repeat it?
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  • Cress
    Cress Community member Posts: 1,012 Pioneering
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    @MissMarple
    Just my opinion, but being able to engage for an hour or so seems good to me, I usually avoid it completely....
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Cress said:
    @MissMarple
    Just my opinion, but being able to engage for an hour or so seems good to me, I usually avoid it completely....
    That's my guess that I would be able to do an hour or two per day in total if I didn't need to get up from bed for bathroom, eating etc. With bathroom, meals and other very basic tasks it is more like half an hour once a week while lying down. It breaks my heart that I can't see/talk to my friends more often.
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  • calcotti
    calcotti Community member Posts: 10,010 Disability Gamechanger
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    MissMarple said:
    Thanks @calcotti So, basically, if it causes overwhelming fatigue during or after the activity then I cannot do it because I couldn't repeat it?
    Exactly so if you cannot repeat it as often as would  be reasonably expected
    MissMarple said:... don't even try to cook anything that needs any preparation more often than once a week because I just don't have the energy. But I don't feel comfortable claiming I 'cannot prepare or cook food' at all because I could, it just leaves me so exhausted that it is not worth it. 
    In which case you cannot prepare a simple meal on the majority of days, in which case you can’t do it because PIP is based on how you are on the majority of days,
    Information I post is for England unless otherwise stated. Rules may be different in other parts of UK.
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  • lemurlover
    lemurlover Community member Posts: 14 Listener
    edited September 2021
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    This is how I was advised: Apply the following to each question: Reliably, Safely, Repeatedly, and fast enough

    So can you prepare say a basic omelette with onions from fresh each day (or on the majority of days), within say 20 minutes or so, safely without cutting or burning yourself, or causing a fire risk

    Both frequency and impact matters, so if say you're at risk of forgetting the hob/causing a fire risk, or cutting yourself due to fatigue, that's going to count in your favour.

    Answer honestly, so for example: "I cannot prepare food on the majority of days due to the energy expended and my constant fatigue. There is always a risk of falling asleep whilst the hob is on, or cutting myself due to tiredness when chopping vegetables. Nonetheless, approximately once a week I gather the energy to focus, and although these risks still remain, I can slowly and carefully complete the task of preparing a meal.This does however severely deplete my energy for the remainder of the day, meaning I am unable to complete any other tasks. If I was to attempt to prepare and cook a meal each day, it would impede my ability to complete any other task, and would be inherently unsafe."

    Apply this to every activity, but for walking include discomfort/fatigue as a prerequisite too.
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Username_removed said:

    You’re in danger overthinking this and seeing issues where there are none. 
    I think you are right. I've made the mistake to approach this whole thing based on the impact certain limitations have on my life. E.g. not being able to cook is just a minor inconvenience to me as in this day and age one can survive on ready meals and the kindness of others. While not being able to see my friends and run errands makes my life with a disability much more difficult and has an impact on my mental health. However, when filling out the PIP form, this doesn't matter. It's about the activities they picked to take into consideration when deciding on an award. So I'll just need to put aside this feeling that they are asking the wrong questions and just try to focus on answering them.
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  • MissMarple
    MissMarple Community member Posts: 187 Pioneering
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    Thank you @Cress @Username_removed @lemurlover @calcotti for taking the time to give me advice on this topic. I much appreciate it.
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