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Taking notes into PIP Consultation? Is it allowed?

PIPnewbiePIPnewbie Member Posts: 270 Pioneering
My girlfriend’s pain management specialist has said she is probably going to diagnose her with fibromyalgia on her next appointment (which comes 1 week after her PIP Consultation).

Anyway, one of her symptoms is brain fog, where she just cannot remember things or get her words out.  This is exacerbated by the pain of her Crohn’s, and tiredness from bowel urgency and incontinence.  And it’s going to be exacerbated on the day of her consultation.

After rehearsing Q&A over and over for weeks with her, she’s just not getting it to stick, even though these are genuine answers to the questions and things she goes through and is affected by, she cannot give a fully detailed answer.

As an example, with preparing a meal, she can’t do it for a multitude of reasons... she can’t stand for more than a few minutes because she gets burning, aching, pins and needles, and loss of sensation in her lower back, legs and hips, but she also can’t chop food without cutting herself, stir boiling pasta without dropping the utensil in and burning herself, or open jars, sealed packets, etc, as it’s all down to her poor grip, and the same burning, aching, loss of sensation she gets in her legs and back, but in her hands and wrists.

On top of this, she had 4 surgeries as a child which left her with a third of her lower intestine and a fifth of her colon, so even if she could stand there cooking just fine, she has to rush to the toilet constantly or be incontinent, and as such her food would be ruined if she were cooking it, and quite frankly would be dangerous just leaving the hob or oven unattended.

She also needs prompting to eat as she’s so tired and in pain all the time, she doesn’t want to eat much, and it of course sets off her need for the toilet immediately.

So as you can see, lots going on for just one question, and ten of the questions apply to her across Daily Living and Mobility.  There’s just no way she will remember to answer everything in exact detail.

Is it possible she be allowed condensed notes to answer questions with, and will they allow her the time to nervously pad through her pages to get the right notes for the right questions?

Sorry for the long question.  Thanks for any help offered.

Replies

  • wilkowilko Member Posts: 2,355 Disability Gamechanger
    I I don’t see any problem , it may be of help if you can attend with her, one thing that may help,is to have the notes in order of the acessment questions as the accessor normally follow the application form . This will make it easier to find the notes required to answer, if you are able to attend you could have the notes ready .
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Yes
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • PIPnewbiePIPnewbie Member Posts: 270 Pioneering
    wilko said:
    I I don’t see any problem , it may be of help if you can attend with her, one thing that may help,is to have the notes in order of the acessment questions as the accessor normally follow the application form . This will make it easier to find the notes required to answer, if you are able to attend you could have the notes ready .
    Thank you for the response.

    I am definitely driving down to where she lives to attend it with her.  

    So am I allowed to sit by her and find the note she may need if the questions are asked out of order?
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    Yes
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • PIPnewbiePIPnewbie Member Posts: 270 Pioneering
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Yes you can do this however, taking pages and pages of writing with notes, there may not be time to look through everything that's written in the notes. She will have to answer all the questions herself but you maybe able to prompt her, this will depend on the HCP. Good luck.
    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.
  • PIPnewbiePIPnewbie Member Posts: 270 Pioneering
    Thanks Poppy.  I have printed out a sheet for each question, with just a bulleted, condensed list of keywords to trigger her memory of what to say about how she is affected by her illnesses, and what illness is responsible for that effect.
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