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PIP Report. Contradicting itself. CFS.

lukeuklukeuk Posts: 19 Member
edited July 2019 in PIP, DLA and AA
Good evening all, 

After spending much time reading through these forums I decided to join! 

A bit about me...For several months I have had an increase in fatigue, mental fog, reduced cognitive skills, intermittent numbness and dizzy spells. My GP suspects CFS and has referred me to neurology.  I have had 'insomnia' for 10 years which has been getting worse gradually. (Personally I believe this to be an undiagnosed circadium rhythm disorder specifically free running sleep but with our NHS that's never going to get investigated) I live with my partner who recently has basically become my carer in the evenings. 
I suffer with ulcerative colitis and vitamin deficiencies which have been improved through supplementation.

However, I would say in the past 6 months life has become a point where half of it has become impossible with the above symptoms. 

I found that my costs of meals etc were increased due to buying prepared meals and due to being physically and mentally incapable of preparing foods. Standing and chopping would make me dizzy and my muscles would be in pain.

I always new PIP existed from my UC diagnosis but was reluctant to claim until the CFS symptoms arisen as it's the CFS that made daily life very difficult and more expensive and after all that is what this benefit is for. I did look through the eligibility criteria and felt like I was ticking all the boxes, did an online assessment and scored 11 points in daily living  descriptors. I know you only have to score 8 to get standard So I figured, worse case scenario I get standard living rate. How wrong I was...

I made sure to be extensive in my application form explaining exactly my struggles with cooking, mental cognition towards sums, finance, not being able to socialise due to it being painful. Explained how dressing my bottom half needs help from my partner. Explained I need reminding to take my tablets for my colitis. Struggle to remember if I took them. Explained that my cfs symptoms varied drastically throughout the day. I work full time, struggling to do so, signed off two weeks with lethargy symptoms. Back to work and back to square one with symptoms. I work in an office, 50 hours a week with breaks in included. 

All of this was reflected in my report. As I was reading through this I thought great, I had an assessor who DIDN'T lie, as all of the information was echoed from my PIP2 form and my F2F in my report...
And then I got to the descriptors. And felt dizzy reading the the ticked options and justifications.  I scored 0 despite all of the descriptions says things like 'yes applicant has struggle and difficulty standing and feels weak and fatigued and unable to safely prepare food, however in the 45 minute consultation he looked fine so Zero points" 

Basically this was the same situation for all descriptors.  I was shocked that for half of the booklet my PIP2 notes and assessment verbal notes all clearly stated and reinforced I was NOT able to to carry out descriptor tasks. Yet the assessor ticked them. It is for this reason I will be taking this to tribunal and also because if I could put any readers into my body at every evening in my life, you would whole heartedly feel I deserve PIP.

I feel the assessor looked at my symptoms in 45 minutes after being rested in bed all day whilst signed off work and just dismissed my journal of symptoms and in not so many words said "he is lying" with not enough observation to meet such a conclusion. 

My condition is affected much worse throughout the later parts of the day. My assessment was in the early afternoon which is at my best. By around 12pm daily my symptoms set in, by 6 they are impossible to ignore, by 7 I have been known to be physically unable to move and a feeling like a car is on top of me. And this process in in repeat 5 times a week. And its killing me.  All of this I wrote down. 
My CFS symptoms is what I call the half battery syndrome. 
If you imagine a normal person goes to bed each night and recharges their battery to say 90%, this is enough to basically carry out life normally. 
My battery recharges to about 20% daily. This is enough to drive to work, do about 3 hours of quality work and then look busy for the rest. Then I get home and I am pretty much unable to move and rely on my partner for all physical and mental tasks. I cant even seep normally and need sleeping tablets to regulate my sleep wake cycle as darkness does not onset the sleepy feeling.

The only errors the assessor made in her description was that she said I said it was a bad day, I did not say this I said it was a good day and she kept referring back in the descriptors saying things like "if this was a bad day then in a good day he would be as happy as Larry"

Has anyone advice, similar experience or any feelings of if my tribunal will be a success?

Apologies for bad grammar.- done on a phone and not feeling great right now (I work in an office so i hate bad grammer) 

I've seen some very straight to the point talkers on this forum like poppy so honestly you can be honest with me. 

Thank you for reading, I welcome your feedback:)

P.S I did not intend the end of this thread to sound like a dragons den pitch.


Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    People do claim PIP and work but sometimes the work you do can go against you, if it contradicts the reasons for your claim.

    You will have to wait for the decision before you can request the MR and once it's made you have 1 month from that date.

    You should put in writing what you disagree with, stating where you think you should have scored those points and your reasons why. Adding 2-3 real life examples of what happened the last time you attempted that activity for each descriptor that applies to you. Sending any relevant evidence you have to support your claim because they rarely contact anyone for this.


    It will help you have more understanding of the descriptors and what they mean. Very often people look at the descriptors and think they can score a certain amount of points but it's not always possible because of the criteria involved.

    Most MR decisions remain the same so you'll most likely have to take it to Tribunal. Appearing in person will give you the best chance of a decision in your favour. The only downside is the waiting times, most of the country have huge backlogs and lots of people are waiting in excess of 1 year for a hearing date.

    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 @lukeuk and welcome to the community.
    I hope Poppy's advice has been useful, but please let us know if you need any advice about the tribunal process.
    Senior Community Partner
    Scope
  • lukeuklukeuk Posts: 19 Member
    Thank you poppy. Legend as always. 
  • lukeuklukeuk Posts: 19 Member
    Can I ask, can you just put in your MR, "I would like to take this to tribunal" rather than wasting time on the MR which many on this forum consider to be a waste of time considering its biased and there is only a 10% success rate?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's an 18% chance of the decision changing at MR stage, although this is low there are some on this forum who have had the decision changed at this stage. My advice is still the same as my previous comment.
    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.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @lukeuk and welcome to the community! Great to have you with us :)
    Scope

  • lukeuklukeuk Posts: 19 Member
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    edited July 2019
    @lukeuk - I'm not familiar with your condition nor what your employment is but, trying to be objective, I wonder if the fact that you are working might contradict the evidence that you have given to support your claim for PIP?

    For example you say that you are incapable of preparing food, need help getting dressed and have difficulty interacting socially and yet you still have a full-time job? Can you give more explanation about why this is (not here, but for the tribunal!) as it does seem very contradictory?

    It might be a good idea also having a good read through the descriptors so that you are clear exactly what they mean. 

    For example you say that you can't socialise as it is "painful" but this wouldn't seem to fulfil "Engaging with others face to face" at all? Similarly cognitive issues are covered under "Making budgeting decisions"but this is essentially whether you can count you change in a shop etc...

    Hope this helps...
  • lukeuklukeuk Posts: 19 Member
    @cristobal in terms of the full time job the reason you said is what the assessor said funnily enough. But I have to work the hours I do or I am homeless. This is the reason for wanting pip so i can reduce them and not have to endanger my life. if I could draw a graph to show physical movement capability and cognitive capabilities throughout an average day vs that of a healthy individual it would be very different. Where as a normal person would slowly reduce until bedtime, mine at around 5pm each day falls off a cliff, I have been confused to a point of how to brush my teeth and pumped hand soap on my tooth brush because I thought it was toothpaste. Held an iorn boiling hot by the hot plate because I didnt recognise it as danger. Taking 90 seconds to figure out how to lock my front door.  Things like that. I do things like I'm sleep walking but not?  And that's when I can move... most of the time it's too painful to walk at the flat line point. When I flat line I'm mentally and physically incapacitated. 

    The issue with PIP assessments is they look at a  'DAY' but for myself to be properly assessed they need to split the day into portions. 2/4 of the day I have usefull functionality. U see this to work to get money to live. The other 2/4 is the actual coming home and living, but it's at that point I'm incapacitated . So in order to claim back 1/4 I need to get something to take place of less hours- PIP 

    Does that make any sense? 
  • cristobalcristobal Member Posts: 968 Disability Gamechanger
    @lukeuk - you make sense but I'm not sure that I can help you explain that for your tribunal. There may be others who can advise though?

    One thing I would avoid though is to say that you want PIP so that you can do less hours at work as whether you qualify for PIP is independent of why you need the money (although i don't disagree with your sentiment)

    Best wishes ,,,post again if there is anything that you need help with..
  • lukeuklukeuk Posts: 19 Member
  • FetlockFetlock Member Posts: 79 Courageous
    If everything falls off a cliff at 5pm and you're still at work and yet to drive home then an assessor would be considering how you manage to do that drive, and come to the conclusion - rightly or wrongly- that your conditions don't affect you to the extent claimed, or you wouldn't be safe to drive.  I'd expect the fact that you drive to be used in the decision letter justification. Yes, the driving thing gets used too often, but it does have relevance in some cases.

    The same applies where working full time goes. There is an assumption that a certain level of cognitive ability is required in order to perform a job. Likewise, being able to communicate, read and understand and engage/mix with people  sufficiently would come into play as part and parcel of working in an office, as would the assumption of being able to make budgeting decisions..
    Similarly, if you can drive to work and back each day, you can plan and follow a journey.

    If any adaptations at work have been made for you, it would possibly strengthen your case, as would referrals to a sleep clinic and the results of that.
  • lukeuklukeuk Posts: 19 Member
    @Fetlock ahh yes, the sleep clinic.  What a waste of time that was. My report said "does not have narcolepsy"... didn't even go in with query narcolepsy. I have insomnia which is the complete opposite.  
    I know what you're saying about the driving thing though  Truth is, I have a hell of a lot of will power and fight in me and I fight through the pain at during the afternoon, but yes, to an assessor im talking bull because I work and drive when I'm in so called pain because only war heroes just battle through the pain I go through on a daily basis. I may as well just give up. It appears these scumbags who fake a limp and pretend to rely on crutches when anyone is watching and claim JSA cause they are too lazy to work and live on benefits street manage to get PIP but those who do anything they can to work and contribute to society and do their bit regardless of how painful it is get 0 points and no financial support. You've got to love the British benefit system haven't you! 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @lukeuk very few people claim benefits fraudulently. You honestly can't judge a book by it's cover. There's lots of people with invisible conditions too.
    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.
  • lukeuklukeuk Posts: 19 Member
    @poppy123456 with all due respect, I think that opinion largely depends on the type of society that you live in the thick of. I have an invisible illness so know only too well the discrimination people go through. But I'm talking about those who exaggerate their conditions to get an extra £. I've lived in some very rough places and very much know of the type. On busses where I grew up, instead of advertising a products, they'd have notices asking for information on local drug raids. 
    I've always been brought up to battle through and stand on my own two feet, it's only now I'm at rock bottom I'm reaching out and getting no help from the government.  I know of people who use their pip just get a few more Stella's  So yes it does make me angry when yesterday I had a heart attack like event due to this undiagnosed condition that scared the living daylights out of me and there are people who are working the system.
  • lukeuklukeuk Posts: 19 Member
    Tribunal is now on the horizon, nervous as I've had to go down to part time with my sleep deprivation being so bad I get two nights sleep.a week 5hrs a piece. 
  • lukeuklukeuk Posts: 19 Member
    Hi @lukeuk and welcome to the community.
    I hope Poppy's advice has been useful, but please let us know if you need any advice about the tribunal process.
    Should I get a lawyer?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    lukeuk said:

    Should I get a lawyer?

    Definitely not needed. Start here https://advicelocal.uk/ welfare rights or a law centre will represent you for free.

    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 @lukeuk. As Poppy said, a lawyer or solicitor isn't needed. But it can help to have representation or someone helping you with the tribunal. Take a look at the link Poppy shared above to see if there is anything available in your area. 
    Senior Community Partner
    Scope
  • lukeuklukeuk Posts: 19 Member
    Just had my tribunal by phone conference. It was absolutely brutal, went on for an hour and a half. It felt like I was in crown court the way they kept cross examining me and trying to twist my words. 

    They said they will need to go and discuss and send a decsion by letter. We all know what that letter will say! - Denied 

    Also, they do not take any changes of your circumstance since the PIP was first carried out, so the fact I've had to reduce my hours now because of my ilness they do not count that as contributing. 

    Homelessness here I come! 

    N24 sleep wake disorder is what my gp now thinks is wrong with me. 
  • DARRANWILLISDARRANWILLIS Member Posts: 23 Listener
    I’m just waiting for my phone call triburill ffs I’m not looking forward to it now 
  • mikehughescqmikehughescq Member Posts: 6,544 Disability Gamechanger
    lukeuk said:

    They said they will need to go and discuss and send a decsion by letter. We all know what that letter will say! - Denied 

    Also, they do not take any changes of your circumstance since the PIP was first carried out, so the fact I've had to reduce my hours now because of my ilness they do not count that as contributing. 
    I’ve learnt over the years to not try and second guess theses things. If you read elsewhere on here it’s not unusual for telephone hearings to take 90 minutes. You can’t read anything into that. These things are simply harder to do over the phone and take longer.

    As regards changes of circumstances, it has always been the case that anything post claim is ignored since 1948. It would be nonsense to do it any other way. 

    A decision maker has to look at your claim on the date of claim only. If you have no award then there is literally nothing to review. Only where some kind of award has been made can there be a review. 

    That aside, a reduction in working hours is irrelevant for PIP and wouldn’t count as a change of circumstances in the same way that starting work doesn’t count as a change of circumstances. PIP only cares about work if starting it suggests your daily living or mobility needs have improved. A reduction of hours could occur for many reasons and so by itself it means nothing. PIP simply want to look at certain activities and see if you can perform unreliably enough to score points. 

    Fingers crossed for a positive outcome.
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