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PIP Report. Contradicting itself. CFS.

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.
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
I hope Poppy's advice has been useful, but please let us know if you need any advice about the tribunal process.
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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...
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?
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..
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!
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.
Definitely not needed. Start here https://advicelocal.uk/ welfare rights or a law centre will represent you for free.
Scope
If you have a few minutes to spare, we'd appreciate your feedback on our online community.
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.
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.