PIP, DLA and AA
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EDS and PIP

Sheenarose1Sheenarose1 Member Posts: 14 Connected
edited September 2018 in PIP, DLA and AA
Hi,I recently have been diagnosed with Ehlers Danlos syndrome type,i put in for pip nearly 12 weeks ago I’m just awaiting my decision but I’ve read so many horror stories,has anyone had any luck? 

Replies

  • sophialobsophialob Member Posts: 61 Courageous
    Hi @Sheenarose1! Welcome to the online community! I'm afraid I can't help with this but sending you the best of luck and hoping it all goes well :smile:
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @Sheenarose1 and a very warm welcome to the community! Many people do get PIP. I wish you the very best of luck! Please do let us know if there is anything that we can do to help :)
    Community Partner
    Scope

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  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Thank you,I’m going out of my mind waiting,if you know of anything else that will help as I’m new to all this...I’m still learning about Ed’s and all the other things connected to it! Just a shame I was being fobbed off like I was going mad 😢
  • Ami2301Ami2301 Member Posts: 7,445 Disability Gamechanger
    Hi @Sheenarose1
    Welcome to the community! Fingers crossed for you :)
    Disability Gamechanger - 2019
  • miilreefmiilreef Member Posts: 21 Connected
    Hi there.
    I have Hypermobile type EDS with a waiting to be diagnosed Dysautonomia and chronic fatigue. I had to go to tribunal but was successful at that point.
    What was key for me was medical evidence of my diagnosis detailing which joints are an issue and how. My part was to describe how these problems limit my ability to carry out the activities that PIP looks at.
    They key is whether you can perform the activities consistently, safely and to a reasonable standard and how often you require assistance, support or simply cannot undertake the tasks. Don’t be disheartened if you don’t get anywhere in the first instance. Message me if I can help in any way.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    That’s very kind thank you 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,

    PIP isn't awarded based on a diagnosis, it's how those conditions affect you daily. You really can't compare 2 people with the same condition because we're all affected differently. Have you had a face 2 face assessment? Most people have these and it's rare to have a paper based decision. Did you send evidence to support your claim, they rarely contact anyone for this.

    If you've had a face 2 face assessment, then you can ring DWP to ask for a copy of the assessment report to be sent to you. This will give you some idea what the decision will be as they mostly go with the report.

    If you haven't had an assessment then waiting times vary depending on backlog in your area, the same with decisions, if you've had the assessment. Good luck.
    Community champion and 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.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Hi,yes I’ve had the face to face that was at the beginning of this month! I have quite a few things wrong with are part of the Ed’s I’ve had to give up work! I’m worried about ringing them 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's nothing to worry about ringing them, you're only asking for a copy of the assessment report. If you live in the UK they will send it before a decision is made. Once they have all the evidence they need they'll either text or write you a letter to tell you they have all the evidence. Decision times can be anything from 2-8 weeks and sometimes longer.
    Community champion and 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.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    I’ve haf a text saying I will get a decision within 4 weeks...I’ve just called them and asked for the assessment report...anexity is something I suffer with so waiting on a decision if affecting me,thank you for your help tho 😊
  • YadnadYadnad Posts: 2,856 Member
    Sometimes I really wonder why we bother filling in the PIP2 in any great detail. or even sending evidence in.
    Many examples show that the assessor ignores most of them in any event and the DWP just rubber stamping the assessor's opinion.
    My own PIP experience is a prime example.

    Maybe the information that you would have put on the PIP2 and the associated evidence could go straight to the Tribunal when you appeal. It seems that they are the only ones that actually test and assess the evidence to come to the right conclusion.

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Oh dear! Always so negative Yadnad. A lot of people claim PIP successfully without any problems at all. The more information that's put on the claim form the better....
    Community champion and 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.
  • YadnadYadnad Posts: 2,856 Member
    edited September 2018
    Oh dear! Always so negative Yadnad. A lot of people claim PIP successfully without any problems at all. The more information that's put on the claim form the better....
    Well to be truthful I can't think of anything positive about the DWP, never mind PIP. I have had a long history of blunders and confusion caused by the DWP over the past 23 years of claiming some type of benefit or another.

    Unfortunately your comment isn't true.

    I filled out three PIP2 forms spending hours trying to work out what information they needed.  Not only were the forms filled with a lot of info, additional sheets were also attached.
    Even evidence being a report from the Spinal Unit that when I was tested on their walking machine I fell off after just over 10 metres. They stated that the maximum distance walking would be less than 20 metres and gave the reason why.

    The assessor's report had me walking 200 metres!

    Whilst I now know what should be on the forms and what not to put on them the main issue has always been the assessment when looking at my ESA, DLA & PIP claims. Unfortunately because of the way I have ended up mentally I can come across as aggressive, argumentative and awkward (fight or flight mode). As when out of my comfort zone the fight mode kicks in. That really isn't me - well wasn't me until 1995. Those traits have been caused by PTSD and a brain injury (frontal lobe damage). I have reams of reports from all manner of mental health medics that have diagnosed these problems and why I have ended up with them But there is not much that I can do about it - the brain injury actually altered my personality back in 1995.

    At 70 PIP is out the question now so all of the above is now irrelevant.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    So I got my letter today,I was not awarded pip...so I’m going to appeal...
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Oh I'm sorry to hear that @Sheenarose1, you must have been really disappointed. Do have a read of Scope's appeal guidance, and let us know if we can be of assistance.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Thank you pippa I will have a read! I did appeal earlier this year and it was rejected!! Because I was receiving pip then a review then said nope I was not entitled to it! So it was stopped,I appealed it,still no luck..I then got my diagnosis in July and symptoms are getting worse or my shoulder likes to semi discocate while I’m driving...so I re applied and I’ve got rejected again,I’m at my wits end now 😢
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi,
    Did you have some help filling in those forms? To constantly re-apply with the same evidence as you previously did you'll most likely keep being refused. My advise is to get some help from your local welfare rights. Good luck.
    Community champion and 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.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Thank you I have an appointment at disk in a few weeks there going to help me!
  • YadnadYadnad Posts: 2,856 Member
    Thank you I have an appointment at disk in a few weeks there going to help me!
    Would that be in Folkestone by any chance?
    If so, good luck. There used to be a guy there years ago (in fact rather disabled himself) who retired. He was good so I heard 5 years ago.
    No idea about now but the stories I hear are rated as poor
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Oh well thanks for the vote of confidence 
  • YadnadYadnad Posts: 2,856 Member
    Oh well thanks for the vote of confidence 
    Just a heads up for you to be aware.

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @Sheenarose1 best of luck let us know how you get on x
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Government_needs_reformGovernment_needs_reform Member Posts: 858 Pioneering
    @Yadnad my friend I really don't understand how you have come to this conclusions you've stated above?

    But one thing is I can assure you they do sometimes get the decisions right, I know you feel you've been hard a hard done by the PIP process and the difficulty you've had with it,  I know it's not perfect but people do get it, as I've said to you in the past many times if you feel your decision was wrong fight for what is right, yes they do use your PIP 2 and medical evidence as you can see this one in my photo is this first page of 1 and I have another page full on the reverse of this page of justification of advice.

    And its the case and they have done all the same in all my reviews for ESA and PIP etc. my PIP one is a great example of this in this photo.


    ⬇️
    I created one of the campaign election videos for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS, UC etc, but now we have to put up with the hate now that is the Tories. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Hey me again,so far I have been to disk and was helped with a MR letter...it’s been8 weeks and I’m still waiting...I’ve called and all I get is call back in a week or two...has anyone else had this? 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    There's no time scales to any decision. Backlogs is just one of the reasons a decision can be delayed. There would have been extra delays with Christmas and New year too.

    Have you asked for a copy of the assessment report? This will give you some idea what the decision is likely to be as they mostly go with the recommendations in there. Just look for the boxes with dots or ticks and use the PIP descriptors to add up the scores recommended.
    Community champion and 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.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Hi poppy,I’ve has the assessment report from my f2f which was all lies.i call them this morning and it’s still with the decision maker who it has been with since the 7th November with still no decision...so it’s just a waiting game I guess 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Ah i see, looking back at your posts you're waiting for the MR decision. There's no timescales to this either. Only 18% of decision change at this stage and most people have to take it to Tribunal. If the decision remains the same then i'd advise you to do this and get some face to face advice from welfare rights or a law centre near you.
    Community champion and 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.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Thank you,wow only 18% that’s very little..I used to get it until January this year which I put in my MR letter,I didn’t appeal it then when I told a friend they told me to put in a new claim which I did then when that was turned down I went to disk for there help and advice in writing my MR and what to do if it’s turned down again...but it’s starting to take its toll on me now at it’s been since the 27th June 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    I'm sorry to hear about your experiences, @Sheenarose1. Please do keep us updated and we'll advise where we can, and I hope today is as kind as possible to you.
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Morning pippa,
    well ive rung pip this morning after waiting 9 weeks. 
    My MR was not granted so off to tribunal now..does anyone have any advice please 
  • Sheenarose1Sheenarose1 Member Posts: 14 Connected
    Hi all,just a quick update..93 weeks since I first applied for pip..my tribunal was cancelled 2 weeks ago and I’m now awaiting a telephone tribunal date with a judge...
    im so deflated buy the whole process,I hate talking on the telephone as I wear hearing aids and I struggle so much 😢..I hope your all well and staying safe x
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    So sorry to hear this @Sheenarose1, I cannot imagine how frustrating this must be. Please do see if things can be done over textphone. Is there anyone who would be able support you through the assessment?
    Community Partner
    Scope

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