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Guest Post: The tangled process of PIP - injustice for disabled people?

chronicendeavorschronicendeavors Member Posts: 21 Courageous
edited July 2017 in Guest blogs

Benefits scrounger. Work shy. Lazy. Dole dosser. All slurs anyone who has had the misfortune of being on benefits may have experienced, to varying degrees. Come with me as I take a look at the injustices that disabled people face in the UK. 

I'm 24 and I started suffering from a multitude of symptoms when I was 22, diagnosed with Hypermobile Ehlers Danlos Syndrome and – just a week ago - Fibromyalgia, after two soul-destroying years of battles with the NHS, mental health services, over-worked GPs, The Department for Work and Pensions (DWP) and the local council. But nothing could have prepared me for the hopelessness that grew with every new challenge that relentlessly arose. 

When I became sick, I had to leave work, as chronic pain and fatigue quickly took control of my life. Like many others, I find myself tangled up in the process of applying for Personal Independence Payment (PIP). With the help of my Stonham Homestay support worker, my application was sent, and not long after, I was invited to an assessment and consequently turned down.

Young woman with brown hair looking at camera

Current figures show that 60% of PIP Appeals are successful, and I aim to be part of that figure. For me, the PIP process has been shambles and I look forward to my day in court to ‘prove’ my disability but no amount of back payment will make up for how awful the process has been.

If you ask Joe Bloggs from down the road if he feels that the young adult in a wheelchair, reliant on a carer who ensures basic personal hygiene and nutrition is taken care of, manages their own medication and lives a reasonably fulfilling life, should have his benefits slashed and care hours reduced, hopefully Joe would be horrified, with eyes wide open in horror at the thought of leaving someone stranded for hours a day, incapable of looking after themselves, who is reliant on meal replacement drinks for nutrition rather than actual meals.

Worryingly, the opposite view is on the rise.  To prevent the masses banding together to help the vulnerable, first, you must create a divide; a divide between those reliant on benefits and those who are lucky enough to be able to work.  More often than not, claimants are represented in the media as someone who just might be abusing the system.

For example, take this recent article by The Sun, entitled “Eiffel Liar: Benefits cheat dad-of-five dodges jail despite enjoying strings of holidays after pocketing 15k with claims he was too anxious to work”. The article focuses on Mr Astbury who has mental health illnesses “posing happily” in front of The Eiffel Tower.  He was revealed to be a benefit claimant working on the side as a scrap metal collector.

In this article there is no reference to the considerable difficulties someone would face, trying to hold down an average job with multiple mental health problems. Instead it focuses on why someone with considerable health issues should not go on holiday. Featured is the caption “Astbury argued that because he was earning less than £100 a week he didn’t have to inform the DWP.”

People who claim ESA are allowed to complete permitted work, for less than 16 hours a week, if the total earnings are less than £115.50 a week. In Mr Astbury’s case, he seemingly hadn’t told the DWP about it and this was challenged, and so it should be.  But it’s the way in which it is portrayed in the media that gives momentum to a rising British mentality that everyone on benefits is somehow playing the system.  

Photo of calculator, uncapped pen and budget plan

The fact of the matter is it isn’t a black and white world where a checkbox assessment determines if you are either too sick to work or you are not. For many, holding down a 40 hour a week contract, on top of commuting untold hours a week is unsustainable. 

This expectation leads to a cycle emerging where you are forced to work, you then get laid off, and more often than not workplace discrimination occurs. Your self-esteem then drops again and people become trapped in the benefits system and health issues worsen. In my experience, PIP is supposed to be there to help pay for the extra cost of disability, but instead, I see it being held back exactly when it is needed most. If the correct support was there we would find ourselves gaining self-esteem and perhaps being in a position where we no longer need to be reliant on benefits. 

But for all of my dismay, there are green shoots of promise emerging. We have the amazing ability to collect opinions we would not have had access to previously, were it not for the internet.  We can harness the power of social media, blogs and have access to live, unbiased coverage, without an editor pushing a smear campaign. We can now make our own minds up and have access to a multitude of outlets where we can build our own opinion. Twitter, Instagram, Facebook and blogs are a place where many can now find understanding, solidarity and have a platform of their own.

Where do you stand on the benefit reforms? Do you feel that the points I’ve raised are valid? Let me know in the comments below! I’m always ready for a debate.

Replies

  • BethEvansBethEvans Member Posts: 1 Listener
    I have Fibro, Pcos, depression and anxiety plus a chronic back problem. I have found working almost impossible and so am relying on Esa. I want to apply for PIP but the people I've spoken to have only said how awful it was and all of them ended up appealing. 
    I either do it and face months of fighting which tbh i don't have the energy to do or live on the small amount you get from Esa alone. 
    As if being disabled wasn't hard enough they want to make it near impossible for us to get enough to survive.
  • wildlifewildlife Member Posts: 1,316 Pioneering
    edited April 2017
    Hi @chronicendeavors, You have only just scratched the surface of what is wrong with people's attitude towards disability. It would be a big improvement if DWP and ATOS/CAPITA could change their attitude and treat us with respect. I was disgusted at the section on the assessor's report entitled "Informal Observations" that allows, or rather encourages them to watch what you do, how you walk, how you're dressed etc before you even get in the room and are introduced to this stranger. You are not told that this will happen (deceipt) and when most of the comments are extremely personal surely this contravenes the human rights regulations. I put in my complaint to ATOS that the first negative comment written about the claimant breaks their customer charter apart from the damage it could cause to someone who already has low self esteem. You wouldn't treat an animal like that. When most of the comments are lies then we come to fraud and I have found cases online of assessor's being reported to the police. If an assessor is so dishonest how can we believe their qualifications or even their name and if ATOS and DWP are allowing this to happen we can't believe them either when we ask for information about the assessor who will be having access to our personal lives, confidential medical records and touching us without gloves to test our strength. This too should be scrapped and Medical evidence used instead as the movements required do not detect neurological conditions or test the amount of pain caused by the movement. Getting back to how we are treated I spoke to one DWP advisor who, without knowing anything about me, was talking to me like I was an idiot. (I chose this word carefully so's not to offend anyone). I let her carry on till the end of the conversation then pointed this out to her. She apologised and hopefully will be more aware of this for her next call.
                  I am waiting now for information from HCPC FOI regarding my assessor's qualifications and I might just find out that it's not only the assessor's who lie to us. ATOS and DWP have both assured me my assessor was properly qualified and are they not lying too when sticking by reports that are clearly not fit for purpose.    
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    There is an assault on society led by nasty profit orientated tory vampires.

    Establishment propaganda outlets such as the Sun and the BBC have always perverted the truth so that the average "sun reader" gets the wrong impression of what is going on in our society.

    I dont think that the vast majority of people are falling for the idea that disabled people are scroungers!  The problem lies in the numbers of people that are being affected by these horrendous attacks on the bennefits system and the welfare state.

    There simply arent enough disabled people to fight this horrendously inhumane attack on our civil rights.  Those that there are by virtue of their conditions are often unable to put up a coordinated and consistent fight against this developing situation.

    The massive breakdown of our societal values instigated by the destruction of the family unit and the creation of mass unemployment is now being followed by a dispicable assault on societies vulnerable.

    The worth of a society is measured by how it cares for its vulnerable.  Sadly we afe now seeing the true worth of the society that they are crafting for us to live in.  History has taught us though, that when the people are pushed they are only ever pushed so far before there is an unstoppable cataclysmic change.  The riddiculous errors in policy judgement exercised by the present and previous government have not gone without inflicting massive damage to tne core of our nation......  There will be a catalyst for change.... The rank incompetence of these people and the total lack of humanity means that they are only inches away from a gaffe on the scale of the poll tax....

    Maybe it will all kick off while Michael Howard is squaring up to the Spannish Guardia Civil at Gibralters Pasport gates ha ha ha what a pillock!  Do they imagine that they will turnGibraltar into Theresa Mays Falklands Conflict?  Dear god they are MENTAL!

    France is in the throws of MASSIVE social unrest due to similar instability brought about by poor societal management.  Its going on all over Europe and sadly the rest of the world is often far worse!  Hence all the refugees from the war zones our glorious leaders have helped to create.

    There is a serious undercurrent in our society today.  One that the ruling classes would be extremely foolish to ignore.  If they keep mistreating the people in the way that they have been and are continuing to do so then things will have to change. If change comes it wont be pretty.

    Far better that they ease off and rectify the damaging internal mistakes and reel their neck back in from wars abroad that we are forced into by the USA.

    Meanwhile the Thatcherite mantra of "Im alright Jack" will propell people forward until apathy will no longer quell the discontent.

    "YOU CANT KID ALL OF THE PEOPLE ALL OF THE TIME!"

    Give back all the TAX MONEY thats been robbed by your banking and corporate bedfellows you TORY VAMPIRES.  Stop ROBBING OUR CHILDREN AND OUR DISABLED!


    Thank you for such a detailed comment! You make very gold and valid points. Our core values are being threatened and the masses distracted as the Tories create chaos. I can't wait for the change haha
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    BethEvans said:

    I have Fibro, Pcos, depression and anxiety plus a chronic back problem. I have found working almost impossible and so am relying on Esa. I want to apply for PIP but the people I've spoken to have only said how awful it was and all of them ended up appealing. 
    I either do it and face months of fighting which tbh i don't have the energy to do or live on the small amount you get from Esa alone. 
    As if being disabled wasn't hard enough they want to make it near impossible for us to get enough to survive.


    @BethEvans I understand your position. I would recommend going for it with the help of a local disability advocacy group. They'll probably make you go to a tribunal but it's kinda good as the panel is made up of a disabled person and two medical professionals. I hope it all goes well for you! X 
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    The way PIP id designed, makes no sense at all. I was assessed by a nurse. She sat there and asked me for a piece of paper which is 9 years old. (I was told on another forum, this means it's out of date) I explained I don't have it; but stated there's a letter from my GP backing up that I'm on the partial sight register. She told me he (GP) must be lying then. Oh of course he is! He has access to that piece of paper and can carry out that simple  testwhich would back up the fact that I'm registered as partially sighted. (or eligible to be on the register)

    I had a friend of mine with me at my assessment, which took place at home. My friend doesn't know a huge amount about my disabilities. He sat there after I talked and asked to say something. He said that I don't quite talk properly, (I can't remember why; but there's a reason I don't pick up on this) I take things literally and he explained some other issues I have in relation to my Autism.

    She ignored most things I said. She claimed I have no memory difficulties. But she never tested my memory; so how can she know that/ She claimed I have no concentration difficulties. How can she know that? I apparently made eye contact. How can she know that when I wear dark glasses, (I was once asked by a 5 year old whether I can see him - that's how dark they are) my eyes constantly move and I can't physically look at you? I tend to (unintentionally) look behind you.

    I mentioned that I go my parents and it's the only way I can get a cooked meal that isn't a ready meal. (or mum will come up to mine and do a few bits for me) It was assumed I have no issues at all planning an unfamiliar journey. I used to live in my parents house... It's a 15 minute journey by bus. Not a 3 hour journey to another county.

    It was assumed for some utterly bizarre reason that because I can cook a pizza, I can cook a simple meal. I struggle with some microwave meals that are more complex than "put in microwave for 5 minutes and leave to stand for 1 minute".

    I told them I use an alarm and a dosette box for my medication. She wrote that and scored me 0 on that part.

    She assumed for some odd reason that because I use Facebook, I have no problems socalising. I'm trying to remember the last time I socialised that wasn't Skype where I didn't walk out because I couldn't cope with the noise.

    She got one thing right and made a lot of assumptions that physically can't be true in the slightest. I'm not even sure she can tell you what half of my conditions are. Actually, I know she can't because she asked me what Hyperacusis was.

    Her body language also told me she didn't believe me. If you're going to make me out to be a liar, whilst also being a bloody liar, don't make it so fricking obvious.

    My safety was ignored on absolutely everything. I've lost count of the amount of times I've almost been run over, overdosed, (accident) burnt myself, etc.

    I used to receive mid rate care and lower mobility. Under PIP, I got nothing. I asked to get it looked at again, I got standard care (1 point off enhanced, which I'm sure was done on purpose) and enhanced mobility. Ridiculous.

    I can't understand how anyone can make an assessment of your disabilities over an hour's assessment. The only thing she got right was that I can walk over 200m. She got everything else wrong. Most odd that my parents and friend (who was present at the assessment) agree on my difficulties but have never discussed my difficulties. The assessor disagrees. My friend only taught for 30 odd years and his background was in communication. So whilst he doesn't know much about Autism, he is well aware of my severe communication difficulties, which Atos claim are non-existent.


    Urgh @Nystagmite I gotta admit reading your experience made me so angry! It hits close to home with mine. I plan on doing a follow up once the tribunal is over with all the details like your post, but for now I can't as I dont want to mess up the trial. I'm glad you have it sorted now and the one point is outrageous! 
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    wildlife said:

    Hi @chronicendeavors, You have only just scratched the surface of what is wrong with people's attitude towards disability. It would be a big improvement if DWP and ATOS/CAPITA could change their attitude and treat us with respect. I was disgusted at the section on the assessor's report entitled "Informal Observations" that allows, or rather encourages them to watch what you do, how you walk, how you're dressed etc before you even get in the room and are introduced to this stranger. You are not told that this will happen (deceipt) and when most of the comments are extremely personal surely this contravenes the human rights regulations. I put in my complaint to ATOS that the first negative comment written about the claimant breaks their customer charter apart from the damage it could cause to someone who already has low self esteem. You wouldn't treat an animal like that. When most of the comments are lies then we come to fraud and I have found cases online of assessor's being reported to the police. If an assessor is so dishonest how can we believe their qualifications or even their name and if ATOS and DWP are allowing this to happen we can't believe them either when we ask for information about the assessor who will be having access to our personal lives, confidential medical records and touching us without gloves to test our strength. This too should be scrapped and Medical evidence used instead as the movements required do not detect neurological conditions or test the amount of pain caused by the movement. Getting back to how we are treated I spoke to one DWP advisor who, without knowing anything about me, was talking to me like I was an idiot. (I chose this word carefully so's not to offend anyone). I let her carry on till the end of the conversation then pointed this out to her. She apologised and hopefully will be more aware of this for her next call.
                  I am waiting now for information from HCPC FOI regarding my assessor's qualifications and I might just find out that it's not only the assessor's who lie to us. ATOS and DWP have both assured me my assessor was properly qualified and are they not lying too when sticking by reports that are clearly not fit for purpose.    


    @wildlife a great point you make! I was unfortunately hindered by a character limit, otherwise I'd have definitely mentioned this. I have pots, eds and fibro, not to mention severe mental health problems. All of these are invisible yet the whole decision was based on these informal observations! And that I had no conditions diagnosed at the time, although I'd be been sick and off work for over a year when I applied. Never mind also it's supposed to be about symptoms not diagnosis bit there we go. 

    Well done for fighting back! The injustice makes me sick. 
  • DeeDeex4DeeDeex4 Member Posts: 16 Connected
    I'm on my third Cancer Grade 3, HER 2 positive Grade three.. I also am Palliative, whilst in hospital Feb 16 with MSSA ( cousin of MRSA ) which I caught having a Hickman line fitted I recieved notification that my PIP was being stopped after a " Health Proffessional" assessment in January.. 3 days after a mastectomy where five stitches burst whilst being put through standard motability movements by her. She claimed NO steps to house.. 2 being there since 1952 when built, she claimed I answered the door.. My 28yr old daughter answered the door.. she claimed I jumped up to fetch my ID, I did NO jumping 3 days after a mastectomy!!! Stephanie fetched my purse.. she claimed I sailed through exercises for mobility, I was driven 3 hrs later to hospital for 5 burst stiches!!!!. ALL in ALL a " Health PROFESSIONAL, with NO medical training standard Jackanory opening!!!!.
    The best bits........
    i had to have my aggressive chemo every third Friday, day 4 after, 5 days of bone marrow replacement, I was allededgley contacted in June by phone for 3 days to say " we are awarding you your PIP back" BECAUSE I was on 5 days of Bone marrow replacement I didn't answer my landline, I knew NOTHING, I wasn't sent a letter SO they STOPPED it again as I didn't agree to allowing re-instatement!!!!!!!!
    SOOOO I appealed to first tier.. I was told " Dis-allowed.
    SOOOOI I appealed to 2nd tier.. I was told " Dis-allowed because you should appeal on law, you appealed using FACTS!!.
    SOOOO I appealed to the High court in London, by this time I had spoken to a MacMilan solicitor who said " you don't stand a chance, it is so hard to get an appeal with the 3rd tier, almost impossible, you should have come to us sooner... well two days later I was allowed a hearing with the 3rd tier, who found the 1st and 2nd had erred on 4 points of law!!!!.
    i started to receive letters saying Denise Margaret Ellis V Secretary of State, it seems this person had no option to agree with little old me and a Judge in London so I had to go BACK to the first tier court to explain my outrage and why I'd bothered 3 Judges and he'd bothered the Secretary of State.
    i went 20th January in front of A Judge, A Doctor, A disability expert AND a solicitor for the Secretary of State, for 2hrs I was beasted, called a liar e.g. " The Judge.. their is NO WAY you came out of hospital the same day as a Mastectomy"... just shows how out of touch rich people in BUPA are!!
    Anyway I felt like I'd been stripped naked and beaten with my own shoe!! NEVER again, will I stand on a principle with the truth. 
    My 06 Cancer put me out of the Prison Service, I re trained to be a sign language tutor, these current Two Cancers have also taken that away from me, I lost my own home after using my £12,000 savings paying for it NO financial assistance came my way from the government even having a daughter who caught Pneumoccocal Meningitis in Hospital as a Prem baby..being left with Frontal love brain damage, Chronic Epilepsy SUDEP alert attached, Chronic Lung Disease, Learning Difficulties, Autism.
    For someone who's never made a habit of claiming off the system, who's always paid into that system this past 13 months has been an eye opening experience, I though I'd seen and heard it all in a Cat A/B Prison over 12 years.. NEVER have I seen such a corrupt system at work up close.. I feel violated having been through that system, if it wasn't for that Judge at the High court having a Moral compass and up-holding his oath to the Court I would NEVER have had my award re-instated 13 months later.....
    By the way, nearly 4 weeks after my 4th court appearance I STILL HAVENT HAD ANY CORRESSPONDENCE OR RECIEVED 13 MONTHS BACK PAY!!!!!!!!!

  • NystagmiteNystagmite Member Posts: 609 Pioneering






    The way PIP id designed, makes no sense at all. I was assessed by a nurse. She sat there and asked me for a piece of paper which is 9 years old. (I was told on another forum, this means it's out of date) I explained I don't have it; but stated there's a letter from my GP backing up that I'm on the partial sight register. She told me he (GP) must be lying then. Oh of course he is! He has access to that piece of paper and can carry out that simple  testwhich would back up the fact that I'm registered as partially sighted. (or eligible to be on the register)

    I had a friend of mine with me at my assessment, which took place at home. My friend doesn't know a huge amount about my disabilities. He sat there after I talked and asked to say something. He said that I don't quite talk properly, (I can't remember why; but there's a reason I don't pick up on this) I take things literally and he explained some other issues I have in relation to my Autism.

    She ignored most things I said. She claimed I have no memory difficulties. But she never tested my memory; so how can she know that/ She claimed I have no concentration difficulties. How can she know that? I apparently made eye contact. How can she know that when I wear dark glasses, (I was once asked by a 5 year old whether I can see him - that's how dark they are) my eyes constantly move and I can't physically look at you? I tend to (unintentionally) look behind you.

    I mentioned that I go my parents and it's the only way I can get a cooked meal that isn't a ready meal. (or mum will come up to mine and do a few bits for me) It was assumed I have no issues at all planning an unfamiliar journey. I used to live in my parents house... It's a 15 minute journey by bus. Not a 3 hour journey to another county.

    It was assumed for some utterly bizarre reason that because I can cook a pizza, I can cook a simple meal. I struggle with some microwave meals that are more complex than "put in microwave for 5 minutes and leave to stand for 1 minute".

    I told them I use an alarm and a dosette box for my medication. She wrote that and scored me 0 on that part.

    She assumed for some odd reason that because I use Facebook, I have no problems socalising. I'm trying to remember the last time I socialised that wasn't Skype where I didn't walk out because I couldn't cope with the noise.

    She got one thing right and made a lot of assumptions that physically can't be true in the slightest. I'm not even sure she can tell you what half of my conditions are. Actually, I know she can't because she asked me what Hyperacusis was.

    Her body language also told me she didn't believe me. If you're going to make me out to be a liar, whilst also being a bloody liar, don't make it so fricking obvious.

    My safety was ignored on absolutely everything. I've lost count of the amount of times I've almost been run over, overdosed, (accident) burnt myself, etc.

    I used to receive mid rate care and lower mobility. Under PIP, I got nothing. I asked to get it looked at again, I got standard care (1 point off enhanced, which I'm sure was done on purpose) and enhanced mobility. Ridiculous.

    I can't understand how anyone can make an assessment of your disabilities over an hour's assessment. The only thing she got right was that I can walk over 200m. She got everything else wrong. Most odd that my parents and friend (who was present at the assessment) agree on my difficulties but have never discussed my difficulties. The assessor disagrees. My friend only taught for 30 odd years and his background was in communication. So whilst he doesn't know much about Autism, he is well aware of my severe communication difficulties, which Atos claim are non-existent.




    Urgh @Nystagmite I gotta admit reading your experience made me so angry! It hits close to home with mine. I plan on doing a follow up once the tribunal is over with all the details like your post, but for now I can't as I dont want to mess up the trial. I'm glad you have it sorted now and the one point is outrageous! 


    I'm sure I gave them enough evidence so that I should score at least 20 points on care. I'm now in the crap situation of my needs have changed, which you're meant to inform them of. But because of how inconsistent they are, there's no way of knowing how it'll go.
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    DeeDeex4 said:

    I'm on my third Cancer Grade 3, HER 2 positive Grade three.. I also am Palliative, whilst in hospital Feb 16 with MSSA ( cousin of MRSA ) which I caught having a Hickman line fitted I recieved notification that my PIP was being stopped after a " Health Proffessional" assessment in January.. 3 days after a mastectomy where five stitches burst whilst being put through standard motability movements by her. She claimed NO steps to house.. 2 being there since 1952 when built, she claimed I answered the door.. My 28yr old daughter answered the door.. she claimed I jumped up to fetch my ID, I did NO jumping 3 days after a mastectomy!!! Stephanie fetched my purse.. she claimed I sailed through exercises for mobility, I was driven 3 hrs later to hospital for 5 burst stiches!!!!. ALL in ALL a " Health PROFESSIONAL, with NO medical training standard Jackanory opening!!!!.
    The best bits........
    i had to have my aggressive chemo every third Friday, day 4 after, 5 days of bone marrow replacement, I was allededgley contacted in June by phone for 3 days to say " we are awarding you your PIP back" BECAUSE I was on 5 days of Bone marrow replacement I didn't answer my landline, I knew NOTHING, I wasn't sent a letter SO they STOPPED it again as I didn't agree to allowing re-instatement!!!!!!!!
    SOOOO I appealed to first tier.. I was told " Dis-allowed.
    SOOOOI I appealed to 2nd tier.. I was told " Dis-allowed because you should appeal on law, you appealed using FACTS!!.
    SOOOO I appealed to the High court in London, by this time I had spoken to a MacMilan solicitor who said " you don't stand a chance, it is so hard to get an appeal with the 3rd tier, almost impossible, you should have come to us sooner... well two days later I was allowed a hearing with the 3rd tier, who found the 1st and 2nd had erred on 4 points of law!!!!.
    i started to receive letters saying Denise Margaret Ellis V Secretary of State, it seems this person had no option to agree with little old me and a Judge in London so I had to go BACK to the first tier court to explain my outrage and why I'd bothered 3 Judges and he'd bothered the Secretary of State.
    i went 20th January in front of A Judge, A Doctor, A disability expert AND a solicitor for the Secretary of State, for 2hrs I was beasted, called a liar e.g. " The Judge.. their is NO WAY you came out of hospital the same day as a Mastectomy"... just shows how out of touch rich people in BUPA are!!
    Anyway I felt like I'd been stripped naked and beaten with my own shoe!! NEVER again, will I stand on a principle with the truth. 
    My 06 Cancer put me out of the Prison Service, I re trained to be a sign language tutor, these current Two Cancers have also taken that away from me, I lost my own home after using my £12,000 savings paying for it NO financial assistance came my way from the government even having a daughter who caught Pneumoccocal Meningitis in Hospital as a Prem baby..being left with Frontal love brain damage, Chronic Epilepsy SUDEP alert attached, Chronic Lung Disease, Learning Difficulties, Autism.
    For someone who's never made a habit of claiming off the system, who's always paid into that system this past 13 months has been an eye opening experience, I though I'd seen and heard it all in a Cat A/B Prison over 12 years.. NEVER have I seen such a corrupt system at work up close.. I feel violated having been through that system, if it wasn't for that Judge at the High court having a Moral compass and up-holding his oath to the Court I would NEVER have had my award re-instated 13 months later.....
    By the way, nearly 4 weeks after my 4th court appearance I STILL HAVENT HAD ANY CORRESSPONDENCE OR RECIEVED 13 MONTHS BACK PAY!!!!!!!!!



    @DeeDeex4 I'm so sorry that you've gone through what you have ! The state has failed you when you needed them. It is despicable that you are having to go through this - your story along with the others on here makes me want to take atos, capita & DWP to court. I'm on 9 months and counting. Terrified as it's bloody awful we have to go to COURT to 'prove' our disability.
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous












    The way PIP id designed, makes no sense at all. I was assessed by a nurse. She sat there and asked me for a piece of paper which is 9 years old. (I was told on another forum, this means it's out of date) I explained I don't have it; but stated there's a letter from my GP backing up that I'm on the partial sight register. She told me he (GP) must be lying then. Oh of course he is! He has access to that piece of paper and can carry out that simple  testwhich would back up the fact that I'm registered as partially sighted. (or eligible to be on the register)

    I had a friend of mine with me at my assessment, which took place at home. My friend doesn't know a huge amount about my disabilities. He sat there after I talked and asked to say something. He said that I don't quite talk properly, (I can't remember why; but there's a reason I don't pick up on this) I take things literally and he explained some other issues I have in relation to my Autism.

    She ignored most things I said. She claimed I have no memory difficulties. But she never tested my memory; so how can she know that/ She claimed I have no concentration difficulties. How can she know that? I apparently made eye contact. How can she know that when I wear dark glasses, (I was once asked by a 5 year old whether I can see him - that's how dark they are) my eyes constantly move and I can't physically look at you? I tend to (unintentionally) look behind you.

    I mentioned that I go my parents and it's the only way I can get a cooked meal that isn't a ready meal. (or mum will come up to mine and do a few bits for me) It was assumed I have no issues at all planning an unfamiliar journey. I used to live in my parents house... It's a 15 minute journey by bus. Not a 3 hour journey to another county.

    It was assumed for some utterly bizarre reason that because I can cook a pizza, I can cook a simple meal. I struggle with some microwave meals that are more complex than "put in microwave for 5 minutes and leave to stand for 1 minute".

    I told them I use an alarm and a dosette box for my medication. She wrote that and scored me 0 on that part.

    She assumed for some odd reason that because I use Facebook, I have no problems socalising. I'm trying to remember the last time I socialised that wasn't Skype where I didn't walk out because I couldn't cope with the noise.

    She got one thing right and made a lot of assumptions that physically can't be true in the slightest. I'm not even sure she can tell you what half of my conditions are. Actually, I know she can't because she asked me what Hyperacusis was.

    Her body language also told me she didn't believe me. If you're going to make me out to be a liar, whilst also being a bloody liar, don't make it so fricking obvious.

    My safety was ignored on absolutely everything. I've lost count of the amount of times I've almost been run over, overdosed, (accident) burnt myself, etc.

    I used to receive mid rate care and lower mobility. Under PIP, I got nothing. I asked to get it looked at again, I got standard care (1 point off enhanced, which I'm sure was done on purpose) and enhanced mobility. Ridiculous.

    I can't understand how anyone can make an assessment of your disabilities over an hour's assessment. The only thing she got right was that I can walk over 200m. She got everything else wrong. Most odd that my parents and friend (who was present at the assessment) agree on my difficulties but have never discussed my difficulties. The assessor disagrees. My friend only taught for 30 odd years and his background was in communication. So whilst he doesn't know much about Autism, he is well aware of my severe communication difficulties, which Atos claim are non-existent.






    Urgh @Nystagmite I gotta admit reading your experience made me so angry! It hits close to home with mine. I plan on doing a follow up once the tribunal is over with all the details like your post, but for now I can't as I dont want to mess up the trial. I'm glad you have it sorted now and the one point is outrageous! 




    I'm sure I gave them enough evidence so that I should score at least 20 points on care. I'm now in the crap situation of my needs have changed, which you're meant to inform them of. But because of how inconsistent they are, there's no way of knowing how it'll go.


    I provided loads aswell but that made no difference. I have the exact same problem, my symptoms change hourly and a new thing can crop up at any moment. I'd be on the phone constantly...makes no sense for fluctuating conditions
  • NystagmiteNystagmite Member Posts: 609 Pioneering




















    The way PIP id designed, makes no sense at all. I was assessed by a nurse. She sat there and asked me for a piece of paper which is 9 years old. (I was told on another forum, this means it's out of date) I explained I don't have it; but stated there's a letter from my GP backing up that I'm on the partial sight register. She told me he (GP) must be lying then. Oh of course he is! He has access to that piece of paper and can carry out that simple  testwhich would back up the fact that I'm registered as partially sighted. (or eligible to be on the register)

    I had a friend of mine with me at my assessment, which took place at home. My friend doesn't know a huge amount about my disabilities. He sat there after I talked and asked to say something. He said that I don't quite talk properly, (I can't remember why; but there's a reason I don't pick up on this) I take things literally and he explained some other issues I have in relation to my Autism.

    She ignored most things I said. She claimed I have no memory difficulties. But she never tested my memory; so how can she know that/ She claimed I have no concentration difficulties. How can she know that? I apparently made eye contact. How can she know that when I wear dark glasses, (I was once asked by a 5 year old whether I can see him - that's how dark they are) my eyes constantly move and I can't physically look at you? I tend to (unintentionally) look behind you.

    I mentioned that I go my parents and it's the only way I can get a cooked meal that isn't a ready meal. (or mum will come up to mine and do a few bits for me) It was assumed I have no issues at all planning an unfamiliar journey. I used to live in my parents house... It's a 15 minute journey by bus. Not a 3 hour journey to another county.

    It was assumed for some utterly bizarre reason that because I can cook a pizza, I can cook a simple meal. I struggle with some microwave meals that are more complex than "put in microwave for 5 minutes and leave to stand for 1 minute".

    I told them I use an alarm and a dosette box for my medication. She wrote that and scored me 0 on that part.

    She assumed for some odd reason that because I use Facebook, I have no problems socalising. I'm trying to remember the last time I socialised that wasn't Skype where I didn't walk out because I couldn't cope with the noise.

    She got one thing right and made a lot of assumptions that physically can't be true in the slightest. I'm not even sure she can tell you what half of my conditions are. Actually, I know she can't because she asked me what Hyperacusis was.

    Her body language also told me she didn't believe me. If you're going to make me out to be a liar, whilst also being a bloody liar, don't make it so fricking obvious.

    My safety was ignored on absolutely everything. I've lost count of the amount of times I've almost been run over, overdosed, (accident) burnt myself, etc.

    I used to receive mid rate care and lower mobility. Under PIP, I got nothing. I asked to get it looked at again, I got standard care (1 point off enhanced, which I'm sure was done on purpose) and enhanced mobility. Ridiculous.

    I can't understand how anyone can make an assessment of your disabilities over an hour's assessment. The only thing she got right was that I can walk over 200m. She got everything else wrong. Most odd that my parents and friend (who was present at the assessment) agree on my difficulties but have never discussed my difficulties. The assessor disagrees. My friend only taught for 30 odd years and his background was in communication. So whilst he doesn't know much about Autism, he is well aware of my severe communication difficulties, which Atos claim are non-existent.








    Urgh @Nystagmite I gotta admit reading your experience made me so angry! It hits close to home with mine. I plan on doing a follow up once the tribunal is over with all the details like your post, but for now I can't as I dont want to mess up the trial. I'm glad you have it sorted now and the one point is outrageous! 






    I'm sure I gave them enough evidence so that I should score at least 20 points on care. I'm now in the crap situation of my needs have changed, which you're meant to inform them of. But because of how inconsistent they are, there's no way of knowing how it'll go.




    I provided loads aswell but that made no difference. I have the exact same problem, my symptoms change hourly and a new thing can crop up at any moment. I'd be on the phone constantly...makes no sense for fluctuating conditions


    I'm in the same situation. I've also had to stop using my hearing aid as well. But it should have been obvious from the evidence I provided, I should have scored more points on that question. But the assessor's argument was I didn't ask for anything to be repeated. Yes, because you were sat right next to me. I gave at least 2 examples of my communication difficulties as well. But no, that one hour where I had a good day, went against me. 
  • FeistyFerretFeistyFerret Member Posts: 3 Listener
    Thank you for sharing your story. 
    I have EDS too and fought two tribunals with mountains of evidence to get my PIP points....I know I'll have to go through it all again in 2020 as my condition is degenerating quickly and they only gave me 5 years! 

    The tribunal panel said to my face I had enhanced care needs BUT needed more evidence for my mobility...I've had three at home assessors in 9 months and all of them contradicted each other. 
    18months later they finally awarded 24 daily living and 16 mobility points.....there was humiliation, desperation, food bank slips and SO MUCH LYING by DWP employees it almost killed my spirit..
    The government really does seem to have a nasty agenda against disabled people.

    Thank you again for sharing, it's comforting to know I'm not fighting alone!
  • DeeDeex4DeeDeex4 Member Posts: 16 Connected
    My heart goes out too you, it's not  enough to have a disability too cope daily with,  the DWP put you through a meat grinder to add insult to injury.
    i spoke to a ladies husband about my case as she had had a first tier appointment a few weeks prior, the husband said " I think the judges are so harsh because their fed up with all these cases going before them"... 
    If that's so, isn't it upto the government to put in place a proper Educated team learned in medical/disability causation, actually reading the medical evidence, calling on only the persons records rather than sending a person with NO medical training and acting on THEIR opinion rather than fact from Medical specialists.
    are these DWP representatives reprimanded for the lies they put on a claim form?? I can guarantee we would be dealt with making false claims. 
    Why are the DWP free to get away with all this? It makes me so angry.
    Advocates for the disabled should be in place... I'd stand up for them.
    wishing you well

  • NystagmiteNystagmite Member Posts: 609 Pioneering
    I complained to both Atos and DWP. I was told the nurse knows what she's doing. Oh, you mean she knows she's lying. DWP haven't responded. 

    If you read my report, there's a lot of contradictions. The person who made the final decision, appeared to have just read the pages where the points were and agreed with that.
  • DeeDeex4DeeDeex4 Member Posts: 16 Connected
    That's exactly the same as mine.. 2 courts IGNORED the points of lies told,  the Supreme Court judge did not, in fact because of the lies they erred on 4 points of law, the judge said it has not been helped the Secretary of State has remained silent!! Back at the first tier the judge brushed me off by saying " well she didnt say that ... she implied it!!!! 
    You are going too have to stay strong with this, they want you too fold.. it is too easy for false claims too get through, the genuine pay for that error, the supreme judge read my file from the previous 3 years that showed and proved this person on Jan 16 had had too have lied as no improvement ( other than a new brain growing)!!!! Could have happened
    Discusting people
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    Thank you for sharing your story. 
    I have EDS too and fought two tribunals with mountains of evidence to get my PIP points....I know I'll have to go through it all again in 2020 as my condition is degenerating quickly and they only gave me 5 years! 

    The tribunal panel said to my face I had enhanced care needs BUT needed more evidence for my mobility...I've had three at home assessors in 9 months and all of them contradicted each other. 
    18months later they finally awarded 24 daily living and 16 mobility points.....there was humiliation, desperation, food bank slips and SO MUCH LYING by DWP employees it almost killed my spirit..
    The government really does seem to have a nasty agenda against disabled people.

    Thank you again for sharing, it's comforting to know I'm not fighting alone!

    @FeistyFerret Goodness me it is terrible how much strain they put on disabled people. I've had to stop doing all hobbies as a result, my interest in things has faded - thus leading to further health complication. Sitting indoors stewing on injustice is not good for mental or physical health!

    I'm really glad you've got it sorted for now. Hopefully by 2020 PIP will be a distant memory that is looked upon with the distaste it deserves. Feel free to find me on the social medias if you ever want to talk :) I try to be an open ear.

  • NickTNickT Member Posts: 6 Listener
    From the evidence that you show it seems that it is a general rule to reject PIP applications out of hand and only confirm them after people have gone through the appeals process. i have seen this many times when dealing with government departments like HMRC VAT etc. We have to stay strong and force them to do the work.
  • DeeDeex4DeeDeex4 Member Posts: 16 Connected
    Agreed but.. do the job properly first time saves money, too send out these " Health Care Proffesionals" ( with NOT one ounce of medical training AND giving them licence too lie mislead imply is costing millions of wasted money... THEN you get a first tier panel too hear the case, who totally ignore medical evidence from specialists and only look to the fictitious inconsistencies of the alleged " Health Care Proffesional".. then the Second tier panel who don't look at anything and send you a letter saying " you have appealed using facts, you need to appeal using POINTS OF LAW" ( they have the worst waste of tax payers funds possible) then you have to appeal to a superior court, one Judge paid hundreds and thousands a year to do the job of ONE IMPARTIAL PERSON looking to Medical FACTS and predictability to outcomes is mind boggling... if facts are not presented correctly by " health Care Proffesional" points of law will be applied incorrectly!! It's odvious... these people are put in place as the proverbial " spanner" in the disabled works... they are used to intimidate, bully mislead the already fragile mind body and sole of an already tired sick and mentally exhausted human being that wouldn't wish their condition on their worst enemy!!!! ( I personally) would make an exception for the Secretary of State). But the absolute worst of all of this is THE SECRETARY OF STATE and ALL of those below him KNOW that this is happening.. how? ... because that's what they were with training EMPLOYED TO DO at the cost to the very people who paid into the system to help them should the unforeseen happen.. YES, we've paid for this injustice to be done to us, ironic isn't it?
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @chronicendeavors, I hope that you dont mind me including this post here?  I would realy like to try and do somthing about all of this.

    Hi all,

    Inspired by this thread and the countless other relevant and somtimes heartbeaking posts relatng to the injustices of the PIP system, I have started a seperate thread asking people to record the extent that the PIP process has negatively affected their health.

    My hope is that if enough people can contribute to this thread relating to the negative effects of PIP, I (hopefuly with some help) will be able to use the information as evidence to contribute to questioning the government as to whether the PIP process is fit for purpose.

    I know its not easy recounting all of the dissatisfaction and woe generated by our collective experiences but I would like to ask you to contribute generously to the thread in order to draw attention to this farcical situation and what is ultimately a very serious issue that isnt garnering enough legitimate public concern.  If you feel the process is making you ill or negatively affecting your health please post details in the thread I have started.  I would also like to request that you to encourage others to get involved too.

    Thank you.
  • DeeDeex4DeeDeex4 Member Posts: 16 Connected
    Hello, I don't mind at all. I haven't mentioned that for three months I'm undergoing tests for MS and Paraneoplastic syndrome (on top of two grade 3 cancers... palliative ), my 15yr old Lily (Grade A) student, leading RAF Cadet, top 25 area maths  student had to accompany me to my hearing as I was nauseous, shaking uncontrollably and extremely dizzy, plus confusion and disoriented.
    As mentioned this has gone on for 13 months and gone to the superior court who ordered this back to 1st tier, the Doctor asked " have you ever had social services involved with the children??" No, why would I " Doctor " well, you have a 15yr old here when she should be at school, it's not acceptable.. is it?" No, but the superior Judge said I should go so as to explain everything in person and I can't go out on my own because I fall, Doctor " mmm".
    By that comment alone I panicked, I'm going too lose my girls, the sick bag came out, gagging coffee up for 15 minutes in between answering questions.
    I got up to leave couldn't get to my feet, what have I done I kept thinking I'm going to loose my girls for £250 a month and a principle.
    4 weeks later I'm still waiting for that knock on the door, I know it sounds dramatic but my cognitive reasoning is all over the place, I've been ironing 40yrs, one day I'm ironing, answer the phone, went back to ironing and forgot how too!!! Really stupid things with my memory.
    For a week I was so ill after, everything wrong with me heightened, my 28yr old nagging the Doctors too come out as I wouldn't go to them, my Oncologist telephoned to ask what was wrong, is it your treatment? I've ordered an emergency Neurology appt ( June)!!!.
    Im an ex Prison Officer, hard to panic to frighten to intimidate, if I could have gotten up to leave I would have, just by that one comment, there are so many others. I was a wreck, lost a further half a stone now 7'2, I'm fighting 2 Cancers with everything I have, looking after 3 Children, 1 disabled... I don't need to take on the Secretary of State to fill in my day, I would never do it again I said... then I realised... Daisy is 16 in a year, she caught Pneumoccocal Meningitis, so I will have to go through it all again for her.
    Oh joy!!!!!
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @DeeDeex4
    I would direct you to write a bit of evidence for my thread but I cant remember what I called it?!  

    If you can leave some information there regarding the negative effect all this has had on you in addition to the Horrendous issues you already have to face in your life I and others helping to create this log of evidence would be very grateful.

    I think its important people write it in the thread Ive created because I know what this sort of thing entails and I wouldnt want to involve or "implicate others"  in what Im trying to do.  Not unless they were certain about what they were getting into.

    DeeDee,  like you Ive been a front line Public Servant both as a teachery/Lecturer and in other capacities in both Local Authority and Charities.  You've spent enough time in the Prison Service to know that having a pop at the establishment is not somthing that you should take lightly.  We both know though that its got to be done though and done with conviction in order to get anywhere with them..... You only have to look at Hilsbrough to understand that.

    I think its DISGUSTING the way that they are treating you!  What was the name of the person who was critical of you relying on your daughter that day?  Social Services?  What a first class IDIOT!  How dare they?
  • bendigedigbendigedig Member Posts: 254 Pioneering
    In addition to this fantastic thread generated by @chronicendeavors.

    Those of you who wish to provide written evidence as to how the PIP process has negatively affected your health please record your evidence in the thread noted below.

    "Is PIP fit for purpose"? A welfare process that negatively affects health?
    Read more at https://community.scope.org.uk/discussion/32900/is-pip-fit-for-purpose-a-welfare-process-that-negatively-affects-health#MItUH2VbIKzTcV36.99

    If I get enough evidence I will certainly consider taking it forward with the proposition that the PIP system is not fit for purpose.

    Please encourage others to do so too.
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    DeeDeex4 said:

    My heart goes out too you, it's not  enough to have a disability too cope daily with,  the DWP put you through a meat grinder to add insult to injury.
    i spoke to a ladies husband about my case as she had had a first tier appointment a few weeks prior, the husband said " I think the judges are so harsh because their fed up with all these cases going before them"... 
    If that's so, isn't it upto the government to put in place a proper Educated team learned in medical/disability causation, actually reading the medical evidence, calling on only the persons records rather than sending a person with NO medical training and acting on THEIR opinion rather than fact from Medical specialists.
    are these DWP representatives reprimanded for the lies they put on a claim form?? I can guarantee we would be dealt with making false claims. 
    Why are the DWP free to get away with all this? It makes me so angry.
    Advocates for the disabled should be in place... I'd stand up for them.
    wishing you well


    @DeeDeex4 Oh that is just awful! They probably are frustrated, as I would be, but why take it out on the people who have no control over it. I'm trying to shout about my horrid experience so hopefully someone will take note of ALL the awful PIP experiences. I still can't understand why they didn't request information from my doctors, they judged an invisible illness on how Iooked... :neutral:

    Lets hold em accountable. Watch this space. Hope you're good lovely <3
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    I complained to both Atos and DWP. I was told the nurse knows what she's doing. Oh, you mean she knows she's lying. DWP haven't responded. 

    If you read my report, there's a lot of contradictions. The person who made the final decision, appeared to have just read the pages where the points were and agreed with that.

    Good on you. I would do the same, but I feel I only have fight for one thing at a time at the moment. My report was laughable at best! I'm shocked by the lies and I can't wait to put it online once my tribunal has happened ;)
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    NickT said:

    From the evidence that you show it seems that it is a general rule to reject PIP applications out of hand and only confirm them after people have gone through the appeals process. i have seen this many times when dealing with government departments like HMRC VAT etc. We have to stay strong and force them to do the work.


    It honestly does seem that way! What a waste of time. Let alone the unnecessary suffering it creates for the claimaint!
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    DeeDeex4 said:

    Agreed but.. do the job properly first time saves money, too send out these " Health Care Proffesionals" ( with NOT one ounce of medical training AND giving them licence too lie mislead imply is costing millions of wasted money... THEN you get a first tier panel too hear the case, who totally ignore medical evidence from specialists and only look to the fictitious inconsistencies of the alleged " Health Care Proffesional".. then the Second tier panel who don't look at anything and send you a letter saying " you have appealed using facts, you need to appeal using POINTS OF LAW" ( they have the worst waste of tax payers funds possible) then you have to appeal to a superior court, one Judge paid hundreds and thousands a year to do the job of ONE IMPARTIAL PERSON looking to Medical FACTS and predictability to outcomes is mind boggling... if facts are not presented correctly by " health Care Proffesional" points of law will be applied incorrectly!! It's odvious... these people are put in place as the proverbial " spanner" in the disabled works... they are used to intimidate, bully mislead the already fragile mind body and sole of an already tired sick and mentally exhausted human being that wouldn't wish their condition on their worst enemy!!!! ( I personally) would make an exception for the Secretary of State). But the absolute worst of all of this is THE SECRETARY OF STATE and ALL of those below him KNOW that this is happening.. how? ... because that's what they were with training EMPLOYED TO DO at the cost to the very people who paid into the system to help them should the unforeseen happen.. YES, we've paid for this injustice to be done to us, ironic isn't it?



    Goodness me, I hope mine doesn't go past 1st tier. I'm already struggling so much to stay afloat I can't take much more of trying to live soley on couple rate ESA. Its barbaraic. Currently living with no carpet or flooring, so concrete downstairs and upstairs is the wooden board stuff. Perfect for breaking my regular falls! I can't fix this issue (nor the disability car, badge, carers allowance) etc until PIP but I fear I won't even get it at this rate. :(
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    @chronicendeavors, I hope that you dont mind me including this post here?  I would realy like to try and do somthing about all of this.

    Hi all,

    Inspired by this thread and the countless other relevant and somtimes heartbeaking posts relatng to the injustices of the PIP system, I have started a seperate thread asking people to record the extent that the PIP process has negatively affected their health.

    My hope is that if enough people can contribute to this thread relating to the negative effects of PIP, I (hopefuly with some help) will be able to use the information as evidence to contribute to questioning the government as to whether the PIP process is fit for purpose.

    I know its not easy recounting all of the dissatisfaction and woe generated by our collective experiences but I would like to ask you to contribute generously to the thread in order to draw attention to this farcical situation and what is ultimately a very serious issue that isnt garnering enough legitimate public concern.  If you feel the process is making you ill or negatively affecting your health please post details in the thread I have started.  I would also like to request that you to encourage others to get involved too.

    Thank you.


    @bendigedig What a great idea! I'd love to take part. The government absolutely need to be held acocuntable and I will shout as loud as i can about it ;)
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    In addition to this fantastic thread generated by @chronicendeavors.

    Those of you who wish to provide written evidence as to how the PIP process has negatively affected your health please record your evidence in the thread noted below.

    "Is PIP fit for purpose"? A welfare process that negatively affects health?
    Read more at https://community.scope.org.uk/discussion/32900/is-pip-fit-for-purpose-a-welfare-process-that-negatively-affects-health#MItUH2VbIKzTcV36.99

    If I get enough evidence I will certainly consider taking it forward with the proposition that the PIP system is not fit for purpose.

    Please encourage others to do so too.


    I'm working on it already :) I hope thread will encourage others who have experienced awful things with PIP to come forwards with their stories. We can contact local MPs (friends of the welfarw state, that is) and hopefully get going from there.
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    It's a waste of time me contacting my MP. He still hasn't replied to the email I sent him in December, asking him to intervene when they turned me down... He also wasn't interested (and told me to stop taking what was said literally) when I asked him to have a word with Atos about being more specific about the time of my home visit. Strange how everyone I spoke to, agreed with me.
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @Nystagmite
    perhaps if we all get started on a coordinated campaign togather somebody (?) might be more than happy to name and shame MPs and their poor handling of PIP comlaints / enquiries?
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @chronicendeavors

    I have been talking today with @DeeDeex4. In the next week or so we are going to formulate aims and objectives to move forward witha a Facebook group/campaign (along the lines of "Is PIP fit for purpose).

    This will be an Apolitical action with the ultimate intention of bringing a review of PIPs fitness as a welfare service.

    This is not a private project.  Please get involved and encourage others to do so also.  

    By the people, for the people.  Irespective of political viewpoint, race, gender, ethnicity, religion.  FOR EVERYBODY.
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    It's a waste of time me contacting my MP. He still hasn't replied to the email I sent him in December, asking him to intervene when they turned me down... He also wasn't interested (and told me to stop taking what was said literally) when I asked him to have a word with Atos about being more specific about the time of my home visit. Strange how everyone I spoke to, agreed with me.


    I have the same problem with mine. My MP is George Freeman haha the one with all the press back in March! I really hope we follow in Scotland's footsteps and rid our system of private companies. It will be a start at least!
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    @chronicendeavors

    I have been talking today with @DeeDeex4. In the next week or so we are going to formulate aims and objectives to move forward witha a Facebook group/campaign (along the lines of "Is PIP fit for purpose).

    This will be an Apolitical action with the ultimate intention of bringing a review of PIPs fitness as a welfare service.

    This is not a private project.  Please get involved and encourage others to do so also.  

    By the people, for the people.  Irespective of political viewpoint, race, gender, ethnicity, religion.  FOR EVERYBODY.


    Hi @bendigedig I would happily get involved with this! I'm sorry I've just seen your response. Is it set up on facebook? 
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @chronicendeavors

    Hiya,

    Thank you very much for showing interest :)

    Well.....  The number of people who have come forward and committed anything to this has made things a bit challenging :/

    @DeeDeex4 and I talked about some aims and objectives which we sort of agreed to.  All seemed a bit pointless though with such a distinct lack of people being interested  here in the SCOPE community.  

    It seems people want solutions to their own problems and see little to be gained for themselves by tackling this as a unit?  Somthing that is becomming increasingly common in "divide and conquer Britain".

    Im a bit useless with F.b. So I realy feel to get anything started its going to need at least 1/2 a dozen people to set up a closed page.  In this way discussions can get underway as to where to go with things.   

    There are good few fb. Pages already offering support and advice to people on PIP etc.  I really would like to veer away from this kind of "acceptance thing" and create a page that actively challenges the DWP and the state about the fitness of PIP as a means for providing welfare.  This needs to be REJECTED by the people of the UK.

    Thats why my initial observation about a welfare initiative that makes peopke ill seemed a "penalty kick" to me?  How can somthing like that be allowed to happen in our modern world?

    There is no use in working on this though if people are just going to navel gaze about there own circumstances and not speak out in a unified voice.

    Im happy to do somthing but in order to "do somthing". People have got to want to get somthing done!

    I do not see the point of two or three of us trying very hard to make somthing work if there is no support in the first place?  People need to band together under a common flag and move this forward in a way that has gravity.

    Please let me know what you think?
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Scope
    Senior online community officer
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous


    @chronicendeavors

    Hiya,

    Thank you very much for showing interest :)

    Well.....  The number of people who have come forward and committed anything to this has made things a bit challenging :/

    @DeeDeex4 and I talked about some aims and objectives which we sort of agreed to.  All seemed a bit pointless though with such a distinct lack of people being interested  here in the SCOPE community.  

    It seems people want solutions to their own problems and see little to be gained for themselves by tackling this as a unit?  Somthing that is becomming increasingly common in "divide and conquer Britain".

    Im a bit useless with F.b. So I realy feel to get anything started its going to need at least 1/2 a dozen people to set up a closed page.  In this way discussions can get underway as to where to go with things.   

    There are good few fb. Pages already offering support and advice to people on PIP etc.  I really would like to veer away from this kind of "acceptance thing" and create a page that actively challenges the DWP and the state about the fitness of PIP as a means for providing welfare.  This needs to be REJECTED by the people of the UK.

    Thats why my initial observation about a welfare initiative that makes peopke ill seemed a "penalty kick" to me?  How can somthing like that be allowed to happen in our modern world?

    There is no use in working on this though if people are just going to navel gaze about there own circumstances and not speak out in a unified voice.

    Im happy to do somthing but in order to "do somthing". People have got to want to get somthing done!

    I do not see the point of two or three of us trying very hard to make somthing work if there is no support in the first place?  People need to band together under a common flag and move this forward in a way that has gravity.

    Please let me know what you think?


    @bendigedig I understand. Hmm it is tough as alot of people facing these difficulties can't cope with that let alone fighting it.  There is s group on Facebook called pip esa fightback . Maybe on there we will have better luck?
  • SapphireStantonSapphireStanton Member Posts: 2 Listener
    The system is flawed beyond belief and is designed to work against the very people that need it the most. 

    There is a formular to the forms and not enough people know HOW to complete them. This coupled with targets for refusals, a lack of understanding of the complex nature of conditions and a disturbing anti-male gender bias has made applying for the support we are entitled to  a mine field. 

    I'm  lucky.  I know the formular. I know how to answer the questions honestly but successfully and I do my best to share this with others in a similar  position. 

    Certainly in my local area the official advocates have no idea what they are doing in this regard, unless they too are charged with saving the DWP a buck or two. I have had to clean up the disastrous applications done through the local advocates more than once. Sadly this can mean the claimant having to go through the procedure, being turned down right up to tribunal and starting again from  scratch.  We all know how stressful it is.

    This year I have swapped from DLA to PIP myself and worked with 5 others both in person and on line. The males have recieved poorer service from the assessors, to the extent of outright lying  and subsequently recieved a lower award. 
    I have even had to sit one applicant down and ask whyvthe would accept help from the DWP to complete the forms, when it is publically known that  they are there to reject as many claims as possible. 

    The crazy thing is, the actual figures for benefit fraud are microscopic in comparison to those of us that have been treated abysmally. The deficit the government love to shout about could easily be met by tax avoiders paying their fair share and MPs being honest with their expenses.

    I'd rather a very very few claim when they shouldn't because TOO many successful claims than one more vulnerable, frightened sick person  to through this process
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Scope
    Senior online community officer
  • wildlifewildlife Member Posts: 1,316 Pioneering
    edited May 2017
    @bendigedig Do you think the lack of interest re: Facebook is an issue about being Anonamous. I have nothing to hide but still I'm on FB and wouldn't want friends and family to read about my benefit problems. Has this been considered? 
  • neil1972neil1972 Member Posts: 1 Listener
    I have taken 12 months to finally be awarded PIP after winning a tribunal but looking at my mandatory reconsideration notes the person at the DWP had wrote down I needed an aid to help me wash and bathe but not awarded me the 2 points for it. The judge at the tribunal had noticed this mistake. I'm now waiting to see if I will receive my back pay or if they will appeal. I'm also hoping my partners carers allowance will be back paid to may last year but I don't think it will because they say it will only be back paid 3 months but it was their mistake that has ended up in it taking this long
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous
    edited May 2017




    The system is flawed beyond belief and is designed to work against the very people that need it the most. 

    There is a formular to the forms and not enough people know HOW to complete them. This coupled with targets for refusals, a lack of understanding of the complex nature of conditions and a disturbing anti-male gender bias has made applying for the support we are entitled to  a mine field. 

    I'm  lucky.  I know the formular. I know how to answer the questions honestly but successfully and I do my best to share this with others in a similar  position. 

    Certainly in my local area the official advocates have no idea what they are doing in this regard, unless they too are charged with saving the DWP a buck or two. I have had to clean up the disastrous applications done through the local advocates more than once. Sadly this can mean the claimant having to go through the procedure, being turned down right up to tribunal and starting again from  scratch.  We all know how stressful it is.

    This year I have swapped from DLA to PIP myself and worked with 5 others both in person and on line. The males have recieved poorer service from the assessors, to the extent of outright lying  and subsequently recieved a lower award. 
    I have even had to sit one applicant down and ask whyvthe would accept help from the DWP to complete the forms, when it is publically known that  they are there to reject as many claims as possible. 

    The crazy thing is, the actual figures for benefit fraud are microscopic in comparison to those of us that have been treated abysmally. The deficit the government love to shout about could easily be met by tax avoiders paying their fair share and MPs being honest with their expenses.

    I'd rather a very very few claim when they shouldn't because TOO many successful claims than one more vulnerable, frightened sick person  to through this process



    @SapphireStanton I'm very sorry to hear of your difficulties. Thank you for helping, especially when they want you to withdraw. 

    Your comment is great and exactly the sort of attitude that makes me proud of this country. It gives me hope , as I'm sure it does you. The only way we can beat this is if we band together. 

    All the best! 
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous
    edited August 2017

    wildlife said:

    @bendigedig Do you think the lack of interest re: Facebook is an issue about being Anonamous. I have nothing to hide but still I'm on FB and wouldn't want friends and family to read about my benefit problems. Has this been considered? 


    @wildlife Thank you for your suggestion. It is a very valid point ! We do have an option for a 'secret' group, and that means your friends can't necessarily see your activity in the group , just members. Would that be a solution? 
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous

    neil1972 said:

    I have taken 12 months to finally be awarded PIP after winning a tribunal but looking at my mandatory reconsideration notes the person at the DWP had wrote down I needed an aid to help me wash and bathe but not awarded me the 2 points for it. The judge at the tribunal had noticed this mistake. I'm now waiting to see if I will receive my back pay or if they will appeal. I'm also hoping my partners carers allowance will be back paid to may last year but I don't think it will because they say it will only be back paid 3 months but it was their mistake that has ended up in it taking this long


    @neil1972 I'm so sorry to hear you have had to go through all that just to get what you deserve! I didn't know there was a limit on the back payments, is this for pip and carers allowance? I hope you get what you are owed! How disgusting to keep money rightfully yours. Keep us updated, won't you. 

    All the best!
  • bendigedigbendigedig Member Posts: 254 Pioneering
    edited May 2017
    Its our Nation.

    We should be saying how we want it to be run.

    Facebook?  I'd rather see mass protest.  I never suggested Facebook.  Im just responding to the suggestions of others.

    Nothing will get done if people do nothing for themselves.  If you want to let them run rough shod over you all then just let them.  Thats whats happening and you are all doing nothing about it.

    Frightened to speak out,  frightened to reveal your concerns, frightened to breathe.

    See where your anonymity and bennefit embarrasment gets you then?  When you've all lost your welfare state and its TOO LATE to do anything.

    If anybody is as serious as I am about wanting to do somthing, just let me know.  Until then Ill just sit back and just watch it all go on thinking how sad it is that nobody is doing ANYTHING to stop it.

    @wildlife

    I think people have become inherently selfish.  They've forgotten how to care for one another.   Nothing is as important to the individual these days as the individual is to themself.  Very sad.

    People have bought into the society that they've had sold to them.   Dragons Den, Bennefit Street, The Aprentice.  Hours of mind bending BBC propaganda.    AAARRRRGGGHHH.  

    I dont want to tell people how to think but for gods sake if sombody doesnt start thinking soon they will take that off you all too!

    I despair.

    Why should I bust a gut over people who cant be bothered to even speak out!  

    Is that where we are?  Is that how limited everybody is?

    No cause, no focus, no unity, no voice.  Prety soon NO RIGHTS.

    @chronicendeavors

    Thank you for your support and encouragement.  I think Im losing the will to keep on with this now.  Tonnes of people here in this community want to write reams about their own problems.  When it comes to helping each other though nobody has it in them to say anything.

    And that will be the end for the British people.  They will just become an entire nation of "me me's "  concerned only with their own lot.  Thats why things have gotten this bad already and thats why they are going to get a whole lot worse.

    We are ALL very much alone and VERY vulnerable until we decide to come together and do something about it.
  • wildlifewildlife Member Posts: 1,316 Pioneering
    edited August 2017
    @bendigedig If you think my motives for not wanting to be on FB as myself are purely selfish you couldn't be more wrong. My claim is more or less sorted for now so I wouldn't still be hanging around on here trying to help others. I'd be away enjoying life. I actually spend all day every day doing things for others within the limitations of my condition. Have just sent a box full of hand knitted clothes to a charity to be sent out to hospitals. 
    On here I'm not giving negative, laid back advice. So much so I don't agree with certain people's attitude to sorting out benefit problems. I tell people they don't have to submit, be strong and proactive You're so right we need to put a stop to what is happening but at the same time I try and see things from all angles and way up pros and cons before acting. I can see DWP investigators having a field day if they know the identity of members of  your proposed group. I'm sure a closed secret group won't stop them identifying who people are. We all know how they see you doing a small thing like typing on a computer and blow it up out of all proportion. If they had their way we'd all be stuck indoors sitting a chair all day acting like zombies. The regular review times of only a few years don't help like I said before you have to be as bad as you can be and stay like it otherwise you'll lose what benefit you've got. I can't see how members of a FB group can be as anonymous as we are on here. Scope protect our identity would Facebook do the same? A closed secret group has been mentioned  but then you'd be defeating the object of bringing this matter to public attention. So it's not the fight I'm against it's the use of FB to do it.
  • nemoverumnemoverum Member Posts: 1 Listener
    Have my assesment in a few days. I have asked for home assesment as i have meltdowns when I'm out. But they refused.  Worried if i have a meltdown. I'm scarred if i have a meltdown there they might call police. If i have one on the way anything can happen and if if don't go if will definitely lose what independance I have.
  • ConradConrad Member Posts: 1 Listener
    Hi.. I thought I was the only one.. will tell my story in a while.. my mental health has suffered major set backs  and my mobilty is really bad.. and the way Ive been treated by capita is astonishing.. this came up on my fb.. so.. I look forward to sharing my story so far.. 
  • HopelessinHertsHopelessinHerts Member Posts: 4 Listener
    I literally had my tribunal Monday May 8th for PIP. It was horrific to say the least.

    I have Aspergers, PTSD, OCD, social anxiety, panic, depression and Ménière's disease. All are hidden disabilities apart from its possible to assume I walk around inebriated all hours of the day because of the MD, I've had a few delightful comments made about that one.

    i physically can't go out on my own, either my husband or one of the older children have to be their in case of anxiety or more importantly, a vertigo attack. Very nasty, very scary and can lead to something called a drop attack (or Tumarkins Otolithic Crisis if you want to get technical) I've had three since November.

    Somy initial application for PIP was denied, my mandatory reconsideration was denied so I thought I'd go tribunal. My husband and kids look after me, I'm lucky to cook once a month due to accidents in the kitchen, I have someone wait around the bathroom as balance is a huge issue. Lots of things that prevent me being as independent and as lonesome as I once was.

    The first tribunal date was adjourned due to lack of medical evidence, I don't seem to get the referrals other people do from my GP so they requested my notes. Second date set and I was confident that maybe, just maybe, my struggles would be recognised. The judges were awful, they literally raised eyebrows of confusion as I explained the impact my disabilities had on me. One went as far as to suggest that I don't eat properly, not because of the depression, that it was because of my teenage children who eat all the food in the house before I can get any, even my husband was becoming frustrated at this point.

    Anyway, the outcome was sent by letter yesterday morning, application denied as I didn't show enough difficulties. Quite how to 'show' the soul destroying tinnitus you experience 24 hours a day, or the vertigo that can come on whilst sitting, the constant imbalance, the anxiety or depression, the PTSD that can be triggered by a sound, smell or memory flashback I don't know.

    I'm not giving up. I'm looking at a second tier tribunal if I can get my head around the error of law criteria, unfortunately the other effect of Ménière's is brain fog so it might take a few days but it's catch 22, stress is a primary contributor to MD symptoms.......
  • NystagmiteNystagmite Member Posts: 609 Pioneering
    Ah, the whole "I can't see it, therefore, it doesn't exist". They said that to me about my hearing problems. You can't look at me and know what I hear and I'm not going to sit there and really ask if you've just swore at me. (yes, I've really misheard someone swearing at me!) Nor do I really want to sit there and keep asking you to repeat yourself. Because i heard fine at assessment, (read: there was no background noise) I don't have hearing problems at all. 

    But apparently, they know more than my hearing therapist and ENT.

    It's best if you can find someone who can help you in regards to your second tier tribunal.

    Unfortunately, like you, I've now started with the vertigo. Especially whilst sitting.

    I get the impression these people doing the assessments don't have a clue about disabilities in the first place. Mine even asked me what Hyperacusis was. Why the hell was she assessing me if she doesn't know what it is? I know it's not about the condition; but how can I be assessed by someone who doesn't know what one of my conditions is? I don't think she even knows much about Autism or the other problems I have.
  • HopelessinHertsHopelessinHerts Member Posts: 4 Listener
    @Nystagmite my f2f assessor had not even heard of Ménière's Disease and in her words 'confessed to being a police station paramedic more used to fighting injuries and alcohol related issues', the panel at tribunal were just as ignorant.

    I don't think many people get  what hyperacusis is, my daughter was diagnosed with it and the GP has suggested that I have it too, but it's difficult to explain to someone who has no understanding of it, how can you explain that noise is painful, the same as sensory processing disorder
  • chronicendeavorschronicendeavors Member Posts: 21 Courageous
    edited August 2017

    wildlife said:

    @bendigedig If you think my motives for not wanting to be on FB as myself are purely selfish you couldn't be more wrong. My claim is more or less sorted for now so I wouldn't still be hanging around on here trying to help others. I'd be away enjoying life. I actually spend all day every day doing things for others within the limitations of my condition. Have just sent a box full of hand knitted clothes to a charity to be sent out to hospitals. 
    On here I'm not giving negative, laid back advice. So much so I don't agree with certain people's attitude to sorting out benefit problems. I tell people they don't have to submit, be strong and proactive You're so right we need to put a stop to what is happening but at the same time I try and see things from all angles and way up pros and cons before acting. I can see DWP investigators having a field day if they know the identity of members of  your proposed group. I'm sure a closed secret group won't stop them identifying who people are. We all know how they see you doing a small thing like typing on a computer and blow it up out of all proportion. If they had their way we'd all be stuck indoors sitting a chair all day acting like zombies. The regular review times of only a few years don't help like I said before you have to be as bad as you can be and stay like it otherwise you'll lose what benefit you've got. I can't see how members of a FB group can be as anonymous as we are on here. Scope protect our identity would Facebook do the same? A closed secret group has been mentioned  but then you'd be defeating the object of bringing this matter to public attention. So it's not the fight I'm against it's the use of FB to do it.


    @bendigedig @wildlife the group was suggested as place to find people who are happy to share their story. There is a lot of noise on Facebook already with other groups about pip etc. 

    I can probably speak for a few people when I say that this process has left me with hardly any fight left. 

    My tribunal has been adjourned as they await 2 and a half years of doctors notes...because letters summarising aren't enough apparently. I have limited energy and right now I gotta concentrate on that, which sucks. Going back over all those years of not being believed has not done well for my mental health  (like they care) 
  • ariesaries Member Posts: 44 Connected
    Bendigedig
    This process grinds you down so much. As you say it's an awful feeling when you feel no body is listening or believing you. 
    I wish you the best for your tribunal please keep updated.
    Aries
  • curious212000curious212000 Member Posts: 2 Listener
    Dear One and All,
    This situation of corruption of the Benefits system by the Governments Department for Works and Pensions, cannot continue. I will be approaching my MEMBER OF PARLIAMENT for Somerton & Frome, David Warburton to arrange a meeting with the Minister of State, David Gaulke M.P. a.s.a.p. I will raise several issues namely P.I.P. disputes and the appeals' procedures.,The Disabled Badge Scheme and the abuse of. also much more petty items to some but important to others, certain issues.

    Kind regards,

    David Gosling.
  • Barrylad1957Barrylad1957 Member Posts: 100 Courageous
    @chronicendeavors
    Absolutely fantastic post, and thank you for sharing it with us. It seems to be that, when the last 4 Prime Sinisters talked about the UK "Leading a revolution in the way mental health problems are treated" (Camoron) and "Re writing the script when it comes to how the disabled are treated" (May), what they actually meant was, 'We will use a combination of gov friendly media, the whips of public opinion, burgeoning benefit regulations and psychocompulsion to force the mentally ill and the chronically disabled into work and off support by literally leaving them with no other options'. A huge part of the neoliberal/centrist scheme that seems to run the planet these days is the ideal that work will make you free - and we've all heard that somewhere before, havent we?
    Between 1974 and 1983, I was an active and violent criminal, and have often, back in those dark pre-reform days, been detained by the police and interviewed - often quite brutally, and rightly so  - by a variety of different forces and divisions up and down the country; I always accepted that it was my own doing that had gotten me there in the first place, and always accepted punishments with good grace. However, I have never, never felt as pre-judged to be guilty of some criminal offence as I have since walking into a jobcentre after being forced out of work due to ill health for the first time in 33 years. The system is stacked against you; for instance, the jobcentre insist that you have a mobile phone or contact number that is in credit all the time - even when youve submitted fit notes - yet, now, the assessors who we are forced to consult with to get help use the fact that you actually have a 'phone to state that you are not socially isolated or anxious. Its definitely a tory schemme now, but let us not forget that this particular boulder was initially rolled down the hill in our direction by a pseudo labour 'government' led by Blair and Brown. Things need to change, but as long as the media are diluting our strength by accusing sick people of malingering, and the general public are accepting of that view, its going to be extremely difficult.
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