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Thread: PIP Assessment and CFS/ME, Anxiety, Depression, Hypermobility, Depression, etc

  1. #1

    PIP Assessment and CFS/ME, Anxiety, Depression, Hypermobility, Depression, etc

    Hello all,

    What a fantastic place this is for hearing other people's experiences and advice!

    I'm hoping some one can advise. I have my PIP assessment on Thursday. I have a lot of minor hhealth issues that add up to affecting my daily living and limiting what I can do, but the main ones are Chronic Fatigue Syndrome/ME, social phobia (I become very panicky in busy places), anxiety (I get panic attacks), depression, irritable bladder syndrome (so need to be able to access a loo a lot of the time), hypermobility, hearing impaired and I have a hearing dog for deaf people (who I will bring along with me). I have asked for a BSL (British Sign Language) interpreter to be booked for the assessment. I currently am in the support group of ESA and am receiving both lower rates of DLA. I am applying for PIP as I received the letter saying my DLA was ending.

    I do not have medical proof of any of the conditions apart from the deafness but am treated for the bladder issue every 4 weeks. I have put on the form how everything affects my daily life. I have recently stopped my anxiety/depression medication to see if the chronic fatigue improves at all. I can do about an hour of activity (usually walking my dog for around 40 minutes with 10 minute sit down rests every 10 minutes, and then 20 minutes of something at home) before needing to rest for a couple of hours. After this initial activity I can only do another couple of hours activity sitting down in half hour chunks. By the end of most days Ido not have enough energy left to prepare myself a meal, I only have a bath around once a week as baths exhaust me, I need help to wash my hair during the bath as this is far too strenuous for me, I need prompting to do exercises and stretches to manage the hypermobility and back pain, etc.

    I'm concerned that at the assessment they are not going to believe all this as I look well and healthy, can move reasonably well as I have hypermobility (although I do get frequent pain due to this but I don't think it is enough that it will show on my face or in my movements). Will they listen enough to what I say?

    I will need breaks (lying down with eyes closed) if the assessment is long, initially after about an hour and then probably around half hour intervals after that. Will the assessor agree to this? Do I just ask to lie on the floor? Due to anxiety issues I tend to not like to make a fuss and just hide any issues. I'm going to find it very difficult to bare all!

    If I push myself too much physically I am exhausted starting from either the following day or often the day after that and the exhaustion can last from a few days to a few weeks. From experience of ESA assessments and the DLA one I will be wiped out for weeks after the assessment as a result of the stress and anxiety involved, not to mention going over all the health issues over and over filling in forms, etc which I find really depressing and has a knock on effect on my physical and emotional health.

    Anyone have a similar situation? How did you deal with it? I live in an Atos area and asked for a home assessment but was told they only do those for people who are housebound. I would have found it so much easier as would have been able to go lie down for breaks and not have had to go to an unfamiliar place that may be busy.

  2. #2
    Senior Member
    Join Date
    Feb 2015
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    Would your GP fax them a letter supporting your need for a home visit ? You are allowed to rearrange once, after that you have to attend wherever they send you. If you need to lie down, or are asked to do movements which will cause you pain - tell them. You have give details and examples of how you are affected including all the embarrassing stuff. You'll never see this person again so don't hold back ! You have to be able to do things safely, reliably and on the majority of days to score points. It would be helpful if you had a letter from a health professional confirming your problems even at this late stage, or have maybe a written statement from a friend who knows you well ?

  3. #3
    Quote Originally Posted by Alaska View Post
    Would your GP fax them a letter supporting your need for a home visit ? You are allowed to rearrange once, after that you have to attend wherever they send you. If you need to lie down, or are asked to do movements which will cause you pain - tell them. You have give details and examples of how you are affected including all the embarrassing stuff. You'll never see this person again so don't hold back ! You have to be able to do things safely, reliably and on the majority of days to score points. It would be helpful if you had a letter from a health professional confirming your problems even at this late stage, or have maybe a written statement from a friend who knows you well ?
    Thanks for your reply Alaska,

    I asked my GP and physiotherapist for letters to support my PIP claim when I was filling in the form but both of them said it doesn't work that way and they wait for DWP to write to them asking for information. Hence I don't feel very supported by the GP at present. I submitted the letter that my mum wrote for my DLA and ESA claims which detail some of it. Also letter from counsellor years ago. I told them on the form that all this is still relevant. I'll ask mum if she will write another letter. Unfortunately I think I will just go to the assessment centre this week and see how I go. I've got to the point of just needing to get it over with as the stress and anxiety is affecting my health too much.

    That really helped you saying I will never see that person again so don't hold back ???? Thanks for that! Unfortunately it is very likely I will see the interpreter again at some point but they see this stuff all the time.

    Thanks for taking the time to reply ????

  4. #4
    Forgot to say we had to rearrange once already as the first appointment they gave me was in another town a couple of hours drive away which I simple would not be able to get to as just being a passenger in a car for that long would exhaust me!

  5. #5
    Senior Member
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    Dec 2014
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    1,681
    Unfortunately doctors and other health professionals do not understand the PIP system.

    We are finding that health professionals/GPs are not contacted and urge claimants to collect their own evidence.

    In view of the time restraints and since you have medical evidence about your hearing impairment I should go to the assessment and make sure that your assessor knows that your health professionals refused to write a letter supporting you as they believed that the assessor would get in touch with them. (Just tell them exactly what was said.)

    When you have your decision then you can appeal it if you believe that the decision was incorrect. Since you are likely to score points for your hearing impairment your other medical conditions, particularly the ME, may need back up medical evidence to award you extra points for the problems you have from this. So it could be that you need the extra points to raise any award given. If this is the case (that you think you should appeal) then it would be a good idea to get some help from CAB/welfare adviser.

    Perhaps someone will say how long their interview was to give you an approximate time frame - 45 mins seems about the average.
    As already said do not be afraid to ask to rest if you need to.

    It is really difficult to predict what decision will be made. In the meantime try not to stress too much - for all the bad stories you hear, hundreds, if not thousands, of claimants are dealt with sympathetically and professionally.

    Let us know how you get on.

  6. #6
    Senior Member nukecad's Avatar
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    As pmlindyloo says GP's do not always understand the system;
    and they are given missleading advice by the DWP to make them missunderstand it.

    The problem is with the advice leaflet that is issued to GP's regarding benefit claims-
    The benefits system - A short guide for GPs

    With regard to PIP claims it says:
    Your patient should complete the forms to support their claim using information that they
    have to hand, and should not ask you for information to help them do this, or to complete
    the forms yourself.
    And then later:
    A health professional from Atos Healthcare or Capita Health and Wellbeing may contact
    you for factual information about your patient’s condition.
    Some GPs (wrongly) read this as saying that they should not provide any letters at all unless asked to by Atos/Capita.

    You could try pointing out to the GP that it only says they should not help you in filling out the form, and should not do it for you.
    It says nothing about them writing a supporting letter; but the GP may charge you for this.
    You should try to persuade your GP to write something to support you if you can.
    I don't know everything. - But I'm good at searching for, and finding, stuff.

    Migration from ESA to Universal Credit- Click here for information.

  7. #7
    I think you will need medical evidence to back those up.

    Also, PIP criteria is much harder than DLA and the mobility is very different.
    If you can walk for that length of time, I doubt you will get high enough points on mobility. To get the standard it's 10 points which is can walk more than 20m but less than 50m.

    The other question is planning and following a route, so again if you are now
    Off medication for this, you will struggle.

    I have been diagnosed with severe travel anxiety, And have two recent psychiatric reports and treatment plans backing me
    Up and I didn't score any points on this questions. Luckily I do have a prolapsed disk in my lower back and chronic pain, both diagnosed with lots of treatment plans.

    I also asked for a home visit and even had a letter from
    My GP stating it would cause distress to me but because I am
    Not housebound thy denied it.

    I walked into the centre in tears due to the distress the journey caused me.

    My assessment was about 30 minutes long and I scored 8 points for daily living and 10 points for mobiltou, currently awaiting a MR decision.

    It may be more beneficial concentrating on getting the enhanced daily living

    Or perhaps don't say you walk that far?

    It could be good to do a diary of your whole week as it could show to the assessor your problems?

  8. #8
    Thank you for your replies.

    Nukead I have sent another email to the GP practice asking for a letter to support my claim. Fingers crossed! My last doctor was lovely and wrote one without any issues but the new ones seem to not be very keen to do letters. The receptionist did tell me last time that they get too many requests.

    My mum is writing a letter too so that should help. I have also been doing a week diary detailing problems, things I struggled to do, energy levels, mood, activity, food preparation, etc.

    The warden here called for me today end the BSL interpreter is booked so that's one less thing to worry about.

    Pmlindyloo I had help filling in the form from Equal Lives who help with things like this. They were great. If I need to appeal I will go back to them for assistance. The length of assessments seems to vary so much. My longest one was over 2.5 hours and my friend's a few weeks ago was 3.5 hours. She is profoundly deaf and has learning difficulties and needed the questions explaining. All 240 of them! I sincerely hope mine is nowhere near that long as I simply couldn't do it. She got enhanced for both groups and we are all delighted as she really needed the help.

    I'm waking up with a real panicky feeling now and am finding it difficult to think about anything else apart from THE ASSESSMENT. Urghhhhh! Be so relieved when it is all over and I can begin to focus on the good stuff ??

  9. #9
    Quote Originally Posted by pmlindyloo View Post
    It is really difficult to predict what decision will be made. In the meantime try not to stress too much - for all the bad stories you hear, hundreds, if not thousands, of claimants are dealt with sympathetically and professionally.
    That's good to know ??

    Also I will let the assessor and DWP know that I requested evidence from physiotherapist and GP but they told me it doesn't work that way and they would wait for DWP to contact them.

    Thank you ??

  10. #10
    Thank you for your replies.

    Nukead I have sent another email to the GP practice asking for a letter to support my claim. Fingers crossed! My last doctor was lovely and wrote one without any issues but the new ones seem to not be very keen to do letters. The receptionist did tell me last time that they get too many requests.

    My mum is writing a letter too so that should help. I have also been doing a week diary detailing problems, things I struggled to do, energy levels, mood, activity, food preparation, etc.

    The warden here called for me today end the BSL interpreter is booked so that's one less thing to worry about.

    Pmlindyloo I had help filling in the form from Equal Lives who help with things like this. They were great. If I need to appeal I will go back to them for assistance. The length of assessments seems to vary so much. My longest one was over 2.5 hours and my friend's a few weeks ago was 3.5 hours. She is profoundly deaf and has learning difficulties and needed the questions explaining. All 240 of them! I sincerely hope mine is nowhere near that long as I simply couldn't do it. She got enhanced for both groups and we are all delighted as she really needed the help.

    I'm waking up with a real panicky feeling now and am finding it difficult to think about anything else apart from THE ASSESSMENT. Urghhhhh! Be so relieved when it is all over and I can begin to focus on the good stuff ??

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