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Chronic Fatigue and UC Health Assessment

PippaT1966
PippaT1966 Community member Posts: 40 Connected
My daughter has been receiving universal credit since Nov, and has a sick note until July from the GP for Chronic Fatigue / ME / Fibromyalgia. For the first appointment, I had to wheel her down to the Jobcentre in her wheelchair, and she has such bad brain fog I had to answer all the questions for her (beyond the basics, name and date of birth). 
I'm dreading the assessment - just going to the centre will be exhausting for her, so both my husband and I are taking time off work to go with her. She suffers from chronic pain and I am worried someone is going to touch her - her friend's mum had a broken leg and they were 'poking' it to check it was really broken at the same centre a few months ago. 
Can we refuse to let someone physically touch her? I have to be very gentle when I am with her, to avoid triggering her fibromyalgia. She has had a terrible time with PIP and we are waiting for the tribunal for this, so I have very little faith in the system. Of course, she is young and beautiful and 'looks' fine. 
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Comments

  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    Hi,

    Are you her appointee? If so then during the assessment you'll be able to answer the questions on her behalf. otherwise she will have to answer them herself.

    They will ask her questions about how her conditions affect her ability to do any type of job. They may ask her to do some activity during the assessment, for example, lift your arms up as far as possible, then legs etc etc. She can refuse to do this if it causes her pain and discomfort. There would be no reason for them to have to touch her, at all!

    Have you taken a look at the descriptors for limited capability (LCW) for work and limited capability for work related activity (LCWRA)?

    If she's given LCWRA then she'll receive the extra £336 per month from the 4th month of her claim. Descriptors here in this link...scroll down for the LCWRA descriptors. For this to apply then at least one of those must apply the majority of the time. For the mobilising one then they will look at her ability to use a self propel wheelchair as well.


    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    That's really helpful, thank you. I found some of the questions on the form difficult to answer for her - she can lift her arms, but to do so more than once or twice will cause her pain, so we had to qualify all the answers with a 'yes, but...'.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    She can't self-propel in a wheel chair, there's no way she would have the strength, so we push her. 

  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    Alot of the questions are ridiculous, i wouldn't have answered with a "yes but.." you should have just explained the reasons she couldn't do the activity regularly and reliably. During the assessment they will ask her questions about a typical day for her as it's all about her ability to do any type of work.

    Did she/you send in evidence to support her claim? They very rarely contact anyone for this, the onus is on the claimant to make sure it's sent.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,666 Scope online community team
    Hi @PippaT1966!
    Has your daughter been given a date for her assessment yet? Best of luck with it and please let us know how you get on. :smile:
    Community Manager
    Scope
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    Hi everyone, I just thought an update might be useful, as it could help someone else. My daughter has had her assessment and they decided she qualifies for the higher rate of LCWRA. The assessor read her file and said that based on how severe her ME is, they would do a short assessment, and wouldn't ask her to do any activities or have any tests (blood pressure etc.) as she was very unwell on the day, and feel asleep twice during the discussion (her blood pressure drops when she is stressed and she falls asleep / passes out).

    They had a sign up saying if any of the movements they asked you to do would cause you pain, that you could refuse them, which we were prepared to do, but nothing was asked of her.

    We will wait for confirmation to arrive in writing, but the best part was she would be taken off the system for 'looking for work' for 2 years and registered as in the 'support group', so I wouldn't have to keep completing her 'to-do list' and she wouldn't keep having to speak to an advisor. 

    We still have the PIP tribunal to get through (refused all PIP), but I'm hoping this adds weight to it. 

    Thank you everyone!
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thank you for the update @PippaT1966 and I'm so glad it worked out for your daughter! We will keep our fingers crossed for the PIP tribunal and if you need any support with this then please do let us know! :)
    Scope

  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,666 Scope online community team
    Hello @PippaT1966. I'm sorry your daughter had to go through another assessment but I'm glad to read she was put into the correct group and is no longer expected to look for work!

    Best of luck with the PIP tribunal. Have you got a date for this yet?
    Community Manager
    Scope
  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    Hi,

    Has a decision actually been made yet? or has she just had the face to face assessment?
    During the assessment they don't usually take your blood pressure or have any tests done.

    When claiming UC after a face to face assessment you don't usually receive the decision in writing through a letter. This letter is usually uploaded onto your UC journal rather than receiving a paper letter.

    Good luck for the PIP Tribunal but just so you know the UC decision has no affect on her PIP claim because they are 2 different benefits.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    Ok, thank you - the assessor said she had completed the form as a series of 'no' responses as to whether she could work - the leaflet that came with it said they'd check her blood pressure and give sight and hearing tests.
    I'll check her UC journal tomorrow. 
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    No dates for the PIP tribunal - we have been on the list since last Sept. 
  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    I thought maybe a decision hadn't been made. The HCP will write a report now and return it to DWP where a decision maker will look at it and make a decision based on the recommendations in that report.

    Ring DWP to request a copy of that report and this will tell you what the decision is likely to be.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,666 Scope online community team
    Hopefully it won't be too much longer then. Unfortunately there's a bit of a backlog.
    Community Manager
    Scope
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    OK, so I've called up the Court and we are currently on Wk 38 of waiting, where the wait is currently 39-46 weeks, so we should know soon what the date will be. I have a letter from February when we last saw the rheumatologist which states how severely affected in terms of brain fog and mobility our daughter is, can anybody think of anything else we should send? I've looked through the form (originally filled in March 2018) and most of the ways in which she is affected are the same (can't plan a journey or travel independently, needs a shower stool, lies down 23 / 24 hours per day) but her ability to walk has deteriorated (she used to be able to walk 500 metres, now it's more like a maximum of 50 and she goes everywhere in a wheelchair we push).

    How would I evidence this? Would 'changing' her story to reflect her current (much worse) physical situation look suspicious? Or do we just wait and if we lose the tribunal, reapply for PIP on the basis of her current state? 
  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    You said her mobility has got worse, is this since the decision was made? If it is then they won't be able to take that worsening of condition into consideration.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    Yes, they made a decision in July, then upheld it when we asked for mandatory reconsideration. We applied for a tribunal in August. We'll just leave it and see what happens at the tribunal.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    Meant to add she has taken quite a turn for the worse since late Sept. 

  • poppy123456
    poppy123456 Community member Posts: 53,039 Disability Gamechanger
    I'm sorry to hear that. Unfortunately the Tribunal will not take that into consideration. If she doesn't get the decision she's happy with at the Tribunal then your only option maybe to put in for a worsening of condition but please wait until the Tribunal make a decision before doing that.
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • PippaT1966
    PippaT1966 Community member Posts: 40 Connected
    Thank you, we will do. 

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