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Hi, my name is mewtwo!

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mewtwo
mewtwo Community member Posts: 4 Listener
Hello to all,

I have been reading on this forum for many weeks now following my application for PIP and scoring zero at assessemnt and MR stage.

Decided to get brave this morning and join  :)

I would be grateful for any advice please?

When I read my assessment report, I was shocked. I did not recognise the person who it was referring to? Throughout there was a constant reference to "3 days", not a time period I ever once mentioned? The assessor noted many times a reduction in only one of my MH meds since last claim (2016) but completely overlooked a new med I heavily depend on which I was prescribed in 2018 by my consultant, Modafinil. 

My last claim for PIP was because I had a complete mental breakdown to the point I believed I needed to be sectioned. Dark, bad times.

In the years since 2016 I have fought long and done a lot of hard work on myself. From being totally housebound due to panic & anxiety, I am now able to drive alone, a total of 5-10 little roads around my home, no more. I also work 2 late evening shifts consecutively but only with medication (diazepam & Modafinil - which is a legal, medically prescribed stimulant because of my CF. Getting a job was a major milestone for me and by no means easy.) It was either take these or give up work which personally for me was not an option. I love my job, it gives me a sense of purpose, self worth and provides social interaction. I am such a people person and actually miss people! The side effects I suffer from taking Modafinil do not allow me to "pop" them every single day or I would willingly do so to have some sense of normality, energy wise.

In 2004 I was diagnosed with an auto-immune disease / liver disease, hence my CF. 
Following working my 2 shifts (3-11pm as I unable to work earlier or unmedicated) I "crash" for the next 2+ days, bed bound. I think my consultant called it PEM, post exertional malaise? I seldom dress, bathe, or function in any way remotely similar to how I used to pre CF symptoms becoming worse for the rest of the week. Hence my application for PIP last September. I have to allocate my energy in terms of priority.

I also have an occluded  / blocked main artery at the top of my left arm (long story). The blood flow is very restricted so I am unable to grip, elevate or use this arm for longer than a minute or so until it goes dead and needs shaking back to life. It aches like crazy.  I explained to the assessor that I simply can not wash or dry my own hair because of it (my daughter does it for me) and I didn't even score 2 points for that?? Beggars belief.

Assessor focused on it being my non-dominant hand and no input from my consultant. I did explain that any input would mean a triple bypass in that arm, with a lengthy op and a very real 50/50 chance if the op was not successful, me needing the arm amputated (verified by consultant letter). Until you have a dud arm you never realise just how many chores need two  :(

She used my ability to work 2 medicated shifts and drive (only 5-10 small roads to exacerbate my abilities and back up statements of "she shold / could". My arm out right in front of me, more or less level with my chest allows for minimal blood flow with small sequential movements for no more than 3/5 minutes at most. If my MH permitted, I seriously doubt I could drive for longer than that because of it.

So sorry for such a long post and the reason I am here -

I am going to appeal to tribunal. I did write a lengthy MR to no avail. My local, charitable (I think) Law Centre have said they will represent me at tribunal. I am going to do a paper based appeal as going outside of my safety zone, 5-10  streets (my work is 5 small roads from my home) feels so much bigger than my capabilities at this point and I do not want to undo the progress I feel I have made or set myself back. I can only hope the tribunal understands and respect this.

I know I need to fill in the on-line form etc. What I wondered was, do I need to send the actual MR I initially wrote and sent to the DWP?

Also I intend to do a personal statement which I have started already, how long can it be??? I am worried as I feel mine will be lengthy. I have consultant letters etc.

Its no fun gauging CF, trying to find a window of opportunity in which to function. Living by a time table your body determines with no in-put from me!! I have taken more Modafinil in the last 2 weeks since I have ever done since them being prescribed in 2018. 

Thank you in advance for any advice, know it will be massively appreciated.






Comments

  • poppy123456
    poppy123456 Community member Posts: 55,305 Disability Gamechanger
    Options
    Paper based hearings for Tribunal have a very low success rate so i wouldn't advise you choose this option. They do telephone hearings too so if possible i'd advise you to choose this as the success rate is about 70% against between 5-8% for paper based hearings. If you have representation then i'm very surprised they didn't advise you this.

    You don't need to send the Tribunal anything you've already sent because DWP will send all of that to them and you will receive everything in the "bundle"

    If you haven't already then you should include a couple of real world incidents of exactly what happened the last time you attempted each descriptor that applies to you. Adding detailed information such as where you were, what exactly happened, did anyone see it and what the consequences were.

    Some also find it helpful for someone that knows you well to write a letter but if they do this then they must make sure they include which descriptors apply and why.
    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.
  • mewtwo
    mewtwo Community member Posts: 4 Listener
    Options
    Thank you Poppy,

    The law centre have said they will represent me but I was advised to only contact them when I had completed the on-line appeal form for tribunal. Apparently they have a waiting list.

    So am I right in thinking that I can "select" the descriptors I feel I should have been entitled to claim for and write what my experience of doing each, relating to them? There is not a set amount of pages or anything, it could be 1 to 1 & 1/2 pages for each?

    I didn't realise I could do a telephone hearing so thank you for that Poppy, I will select that option.

    I am currently waiting for my MR notice to arrive. It has been over a week now and DWP said it was posted on 17/02. I am really aware that I have only one month in which to appeal.
  • poppy123456
    poppy123456 Community member Posts: 55,305 Disability Gamechanger
    Options
    When you request the hearing you just need to give them a brief reason for why You disagree with the decision. Anything else can be sent at a later date. You will
    likely be waiting at least several months for a hearing date.

    If you will have representation they should do everything like this for you. During the hearing you will need to speak for yourself, the rep will not be able to speak in your behalf. 

    You actually have 13 months to request the MR. If it’s outside the first month you will need to tell them why you’re late requesting it. It’s very unlikely they will refuse a late appeal. 
    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.
  • mewtwo
    mewtwo Community member Posts: 4 Listener
    Options
    I have already made my MR (appeal to DWP) Poppy (points stayed the same - 0), it is the actual MR notice the DWP send that I am waiting for so I can appeal at tribunal. The on-line form for tribunal needed dept number etc which is on the mandatory reconsideration notice.

    To be honest I feel like giving up with it all  :(


  • poppy123456
    poppy123456 Community member Posts: 55,305 Disability Gamechanger
    Options
    I had realised you had the decision and are now waiting for the letter. My advice remains the same. You shouldn't just give up because as i advised there's about a 70% success rate at this stage.
    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.
  • Westy088
    Westy088 Community member Posts: 11 Listener
    Options
    mewtwo said:
    Hello to all,

    I have been reading on this forum for many weeks now following my application for PIP and scoring zero at assessemnt and MR stage.

    Decided to get brave this morning and join  :)

    I would be grateful for any advice please?

    When I read my assessment report, I was shocked. I did not recognise the person who it was referring to? Throughout there was a constant reference to "3 days", not a time period I ever once mentioned? The assessor noted many times a reduction in only one of my MH meds since last claim (2016) but completely overlooked a new med I heavily depend on which I was prescribed in 2018 by my consultant, Modafinil. 

    My last claim for PIP was because I had a complete mental breakdown to the point I believed I needed to be sectioned. Dark, bad times.

    In the years since 2016 I have fought long and done a lot of hard work on myself. From being totally housebound due to panic & anxiety, I am now able to drive alone, a total of 5-10 little roads around my home, no more. I also work 2 late evening shifts consecutively but only with medication (diazepam & Modafinil - which is a legal, medically prescribed stimulant because of my CF. Getting a job was a major milestone for me and by no means easy.) It was either take these or give up work which personally for me was not an option. I love my job, it gives me a sense of purpose, self worth and provides social interaction. I am such a people person and actually miss people! The side effects I suffer from taking Modafinil do not allow me to "pop" them every single day or I would willingly do so to have some sense of normality, energy wise.

    In 2004 I was diagnosed with an auto-immune disease / liver disease, hence my CF. 
    Following working my 2 shifts (3-11pm as I unable to work earlier or unmedicated) I "crash" for the next 2+ days, bed bound. I think my consultant called it PEM, post exertional malaise? I seldom dress, bathe, or function in any way remotely similar to how I used to pre CF symptoms becoming worse for the rest of the week. Hence my application for PIP last September. I have to allocate my energy in terms of priority.

    I also have an occluded  / blocked main artery at the top of my left arm (long story). The blood flow is very restricted so I am unable to grip, elevate or use this arm for longer than a minute or so until it goes dead and needs shaking back to life. It aches like crazy.  I explained to the assessor that I simply can not wash or dry my own hair because of it (my daughter does it for me) and I didn't even score 2 points for that?? Beggars belief.

    Assessor focused on it being my non-dominant hand and no input from my consultant. I did explain that any input would mean a triple bypass in that arm, with a lengthy op and a very real 50/50 chance if the op was not successful, me needing the arm amputated (verified by consultant letter). Until you have a dud arm you never realise just how many chores need two  :(

    She used my ability to work 2 medicated shifts and drive (only 5-10 small roads to exacerbate my abilities and back up statements of "she shold / could". My arm out right in front of me, more or less level with my chest allows for minimal blood flow with small sequential movements for no more than 3/5 minutes at most. If my MH permitted, I seriously doubt I could drive for longer than that because of it.

    So sorry for such a long post and the reason I am here -

    I am going to appeal to tribunal. I did write a lengthy MR to no avail. My local, charitable (I think) Law Centre have said they will represent me at tribunal. I am going to do a paper based appeal as going outside of my safety zone, 5-10  streets (my work is 5 small roads from my home) feels so much bigger than my capabilities at this point and I do not want to undo the progress I feel I have made or set myself back. I can only hope the tribunal understands and respect this.

    I know I need to fill in the on-line form etc. What I wondered was, do I need to send the actual MR I initially wrote and sent to the DWP?

    Also I intend to do a personal statement which I have started already, how long can it be??? I am worried as I feel mine will be lengthy. I have consultant letters etc.

    Its no fun gauging CF, trying to find a window of opportunity in which to function. Living by a time table your body determines with no in-put from me!! I have taken more Modafinil in the last 2 weeks since I have ever done since them being prescribed in 2018. 

    Thank you in advance for any advice, know it will be massively appreciated.






    Hiya, 

    I think if you have already done the MR and not got anywhere with that then the tribunal is definitely the way forward as I think sometimes what one person deems as ok another won’t, so it’s sort of a 50/50 chance it will be allowed but it’s always worth trying.

    The problem I’ve found with pip is it’s not what’s wrong with you it’s how it affects you day to day. If you’re working and then another day you can’t, they sometimes take the first line into consideration. 

    You don’t need to supply any evidence to them though again as the DWP will have it all with the application and if you feel like it might help in a tribunal then maybe take all evidence in with you as this might help the panel decide whether to award it or not.

    let us know how you get on and good luck x
  • mewtwo
    mewtwo Community member Posts: 4 Listener
    edited February 2023
    Options
    Thank you @Westy088

    Following my working days I "crash" for want of another word for 2+ days, I am practically good for nothing and need to recover. Consultant says it is PEM, post exertion malaise??

    I am torn between whether I think it really is worth bothering or to fight.

    I still feel so cross that a complete stranger, who obviously didn't listen to me properly, painted a picture of my life that it so far removed from my reality.

    Have a good day x


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