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Chronic Fatigue and UC Health Assessment

PippaT1966PippaT1966 Member Posts: 37 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. 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 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.


    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.
  • PippaT1966PippaT1966 Member Posts: 37 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...'.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    She can't self-propel in a wheel chair, there's no way she would have the strength, so we push her. 

  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope 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:
    Senior Community Partner
    Scope
  • PippaT1966PippaT1966 Member Posts: 37 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_ScopeChloe_Scope Scope Posts: 10,653 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_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope 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?
    Senior Community Partner
    Scope
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 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. 
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    No dates for the PIP tribunal - we have been on the list since last Sept. 
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    Hopefully it won't be too much longer then. Unfortunately there's a bit of a backlog.
    Senior Community Partner
    Scope
  • PippaT1966PippaT1966 Member Posts: 37 Connected
  • PippaT1966PippaT1966 Member Posts: 37 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? 
  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 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.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Meant to add she has taken quite a turn for the worse since late Sept. 

  • poppy123456poppy123456 Member Posts: 22,218 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.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Thank you, we will do. 
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    So, we have a date for the tribunal (a full 11 months after sending off the paperwork!). I have sent a letter to the court from her rheumatologist about her ADL's being affected by her severe fatigue, and her diagnosis of ME with Fibromyalgia. Does anyone have any advice of anything else to take or send beforehand?
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Oh, and we're still waiting for the DWP to update the online system to let us know if they are awarding her the higher award for universal credit. 

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Difficult to give any advice on what else to send as no one here knows exactly how her conditions affect her. Do bare in mind that PIP isn't about a diagnosis, it's how those conditions affect your ability to carry out daily activity based on the PIP descriptors and they won't be able to take into consideration any worsening of conditions.

    For the LCW decision then have you rang UC to request a copy of the report to be sent to you? This will give you some idea what the decision is likely to be because they mostly go with the report.

    Good luck with the Tribunal and do let us know the outcome.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Thank you - I didn't think of requesting a copy of the report. I'll ask her work coach today.

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    One other thing, if you're not her appointee then during the Tribunal hearing she will have to answer all the questions herself.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Yes, I am her appointee, and I get my own copy of all her paperwork sent to me. 

  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Thank you to everyone who commented - my daughter has been awarded the higher rate of incapacity benefit and told she is not fit to work or to look for work. We are so relieved, as she will get back payments which will enable her to buy a new wheelchair. We just have the PIP tribunal to get through next week!
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,997

    Scope community team

    That’s brilliant @PippaT1966! I’m so pleased for you and your daughter. Best of luck with the PIP tribunal next week too. 
    Senior Community Partner
    Scope
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    edited August 2019
    That's great news! Just so that those that read this don't get confused, Incapacity benefit no longer exists.

    What she's been awarded is LCWRA for Universal Credit. She'll receive an extra £336 per month from the 4th month of her claim, starting from when she sent in her first fit note.

    Good luck with the Tribunal.
    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.
  • PippaT1966PippaT1966 Member Posts: 37 Connected
    Yes - couldn't remember the acronym for LCWRA! She's due to get back payments to the 4th month of her claim. To give context, we first claimed in Nov, submitting a doctor's note saying she was unfit for work, then her medical assessment was in June. Found out 10 days ago what the results of this was. 

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