PIP assessments are dehumanising, degrading, very distressing and potentially harmful

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I co-run a support group for people going through Employment and Support Allowance (ESA) and Personal Independent Payment assessments and appeals. I have heard many people’s harrowing experiences of these assessments, I have written about them, and I’ve written critically about the assessment process itself. However, it isn’t until you experience one of these assessments for yourself that you may fully appreciate just how utterly distressing, surreal, degrading and dehumanising the process actually is. Or how potentially harmful.

I had my first ever Personal Independence Payment (PIP) assessment today. I have systemic lupus and pulmonary fibrosis, among other problems, all of which affect my mobility and capacity to live independently, day-to-day. My consultant is a rheumatologist and more recently, I have been seeing a pulmonary consultant. Other specialists I sometimes need to see are a neurologists, opthalmologists, physiotherapists and haematologists.

After a bout of pneumonia and sepsis earlier this year, which almost cost me my life, a follow-up scan found further lung problems, which have probably been ongoing for some time. Fibrosis can happen as a result of connective tissue illnesses like lupus, scleroderma or rheumatoid arthritis. It can also happen to people whose conditions have been treated with a chemotherapy called methotrexate – which I was given from 2012 onwards. My mother, who had rheumatoid arthritis, died suddenly of pulmonary fibrosis in 2009. The coroner said it was a complication of her illness, not because of a treatment. She was never given methotrexate.

The interview part of the assessment seemed okay, initially. I provided further evidence regarding my recent assessment, undertaken by my local council’s Occupational Therapy Service, which led to the prescription of aids and appliances in my home. The assessment report was quite clear about my basic medical conditions and day-to-day mobility limitations. I was asked about medication. I explained that following my second appointment with my new rheumatologist, I was prescribed some new medications, including one for secondary Raynaud’s syndrome, which has arisen because of my having lupus, as a complication.

A recent thermal imaging and microvascular study shows that this condition has got worse over time, and so my rheumatologist prescribed a treatment called Amlodipine. It concerned me that the Health Care Professional looked confused and skeptical when she asked for a list of my medication, and she said that this is a treatment for high blood pressure, she seemed to disbelieve what I had told her. I explained that I don’t have high blood pressure, and that calcium channel blockers such as Amlodipine are used for more than one condition, such as certain types of angina – which I also don’t have – and secondary Raynaud’s syndrome, which I do have. 

I was asked about the impact of my illnesses on my day-to-day living. At one point I explained that I find preparing and chopping food difficult because of the tendonitis in both wrists. I have been diagnosed with De Quervian’s Tenosynovitis, which makes putting any weight or strain on my wrists very painful.

I was also concerned that I was then asked if I have had my wrists splinted. This shows a lack of understanding about my condition. I have had splints but it did not make any difference to my wrists. I was diagnosed with De Quervain’s syndrome by my rheumatologist and a physiotherapist in 2011, but had the problem for considerably longer. As my physiotherapist pointed out, my wrists are not injured or strained through overuse and so won’t get better with rest or splinting. This is because they are damaged by a chronic systemic inflammatory disease process that is ongoing, and he told me it is medication rather splinting that is needed to try to manage the inflammation.

Splinting my wrists is akin to putting a plaster cast on a knee affected by rheumatoid arthritis, or a plaster on cancer. It won’t help at all. That the HCP didn’t seem to understand the difference between the chronic inflammatory symptoms of connective tissue disease and curable strain and injury related conditions bothered me.

Another thing that bothered me is that I was asked about the frequency of my periods of severe illness and how that impacts on my ability to manage things like personal care. She wanted an actual number of days, which of course is impossible to give with any precision when you have a fluctuating condition. Sometimes I struggle getting dressed and spend days on end in my pyjamas, and the HCP asked me “how often”? I tried to give an average number of days per month, but because the acute flares of my illness vary so much from month to month, week to week, that was very difficult to do. She also seemed impatient that I struggled to try and work out an average. I have cognitive problems as a resut of my illness.

Another problem is that I struggle with washing my hair sometimes, and she demanded to know how often I need assistance with that task. The best I could do was to explain that when I have no help, I can go up to two weeks at a time with matted, unwashed hair. I felt embarrased and ashamed enough in having to discuss these personal difficulties with someone I have never met, but it was made to feel somehow like a confict, that part of the discussion. I felt that if I didn’t provide precise and quantified “evidence”, the qualitative details – my experience of my disability – would not be taken seriously by the HCP. 

Another problem with the assessments that worries me is that there was nowhere near enough time to discuss the complex impact of all my complex medical symptoms and conditions on my day-to-day life.

The ‘examination’

After discussion of my conditions and how my illnesses impact on upon my day-to-day living, I was asked to do some tasks during an examination, which have left me in a huge amount of pain. I also felt stripped of dignity, because I struggled to manage the exercises and felt very anxious and distressed. I was shocked at some of the tasks I was asked to do, and also shocked at the fact I couldn’t actually undertake a number of these tasks. My shock turned to anger later, as I had to leave in significantly more pain that I had arrived with at the start of the appointment. I was also asked to do each of the unfamiliar tasks and exercises in quick succession, which made assessing any likely pain and potential damage difficult before trying to do them.

It is also a traumatic experience to suddenly discover that your illness has insidiously robbed you of a degree of mobility that you previously assumed you had. That is always a shock. 

Last year, my GP was carrying out a standard examination and smear, when my hips locked painfully, as I tried to move my legs. After this, she told me to not get up for a while, and she described the experience – discovering that my mobility had been painfully restricted by my illness – as “traumatic.” It was.

I have, among other problems, very painful inflammatory arthritis and tendonitis in my knees, hips, spine, Achilles’ tendons and ankles. Because the inflammation and damage is bilateral and symmetrical – affecting both knees, both hips, both ankles and both Achilles’ tendons equally, and across my lower spine – it leaves me unable to compensate for pain, stiffness and weakness by shifting my weight and balance onto another limb, as that is also weak, stiff and painful. It leaves me unsteady. I often use a stick to stop me falling over, but as an aid for walking, it’s pretty useless generally, because my shoulders, elbows and wrists also won’t take any of my weight.

The inflammation process causes marked stiffness as well as severe pain, and so restricts my mobility. I was asked to “squat down” at the start of the examination. I refused, and told the assessor that I couldn’t do that. It would have certainly caused me severe pain and possibly an injury. As I can’t support weight on my shoulders and wrists – I also have osteoporosis in my wrists and hands –  had I tried and fallen backwards, I may have easily ended up with a fractured bone. I was horrified at being asked to do that. I struggled to equate the “health care professional” with what I had been asked to do, and felt confused and shocked that she had asked me to do something that may have been harmful.

I also felt that the HCP may have misconstrued my comments that I couldn’t undertake this task as an unwillingness to cooperate, as she looked unhappy about it. She did ask why, and I explained. I felt that trying some of the other tasks she set, which looked to be less dangerous, would at least demonstrate that I wasn’t being uncooperative, and most looked like they wouldn’t inflict any damage at first glance, when she demonstrated them.

However, other exercises I tried to do resulted in my neck locking and severe pain when I was told to turn my head to look over my shoulder – and couldn’t. I have neck problems through longstanding inflammation there and an upper spine injury involving a displaced vertebrae, which is sometimes very painful. In addition, the problems in my shoulders also contributed significantly to the level of pain when I turned my neck, and my neck clicked painfully at the base of my skull. 

I was asked to put my hands and wrists in positions that looked impossible to me. I tried, though. I was asked to line the backs of my wrists up with my hands flat, which I couldn’t do, and it hurt me a lot to try this.

Phalens-maneuver
This is called Phalen’s Manoeuvre. I was asked to do what is actually a provocative diagnostic test for carpal tunnel syndrome – which entails compression of the median nerve. The test provokes the symptoms of carpal tunnel problems, in the same way that the painful Finkelstein test provokes symptoms of severe pain in people with De Quervain’s. I have never been diagnosed with carpal tunnel problems, but I do have more than one diagnosis of bilateral De Quervian’s Tenosynovitis, as stated previously.

I tried to do this manoeuvre, even though it isn’t applicable to my condition (though I didn’t know that at the time, I have since researched the test, as I wanted to know why I couldn’t perform it). I couldn’t even get close to managing it, it hurt my shoulders a lot when I tried to align my elbows at right angles with my dropped finger tips, and I couldn’t drop my wrists fully due to an incredible pain and stiffness that I had not expected. The backs of my wrists simply painfully refused to meet.

I do struggle with pain when putting any weight on my wrists, but didn’t realise how much they had stiffened up, restricting their movement. Not being able to perform this movement doesn’t mean I actually have carpal tunnel syndrome. Nonetheless, I feel that given my previous concrete diagnosis, I was put through this painful and traumatic series of medical tests for no good reason. 

This is the problem with a short assessment of complex conditions. Many of my problems and diagnoses go back years, and only some of them are summarised neatly on my consultant’s report. My relationship with my new rheumatologist started in April, my old one moved in 2015. My new rheumatologist decided to “challenge” the previous diagnoses of two former rheumatologists. Her report to my GP was woefully inaccurate because she had not read my notes or listened to what I told herLong story short, she re-diagnosed me, inaccurately, with fibromyalgia, she didn’t read my notes, she sent me for tests and scans I had already had previously, whilst suspending my treatment pending results. The scans and tests took months. That resulted in a serious lupus flare, which culminated in a bout of pneumonia and sepsis. During the time I was in hospital, I was re-diagnosed with lupus following abnormal test results. My having lupus is thought to be the key reason why I had got so ill – unfortunately, lupus leaves me very susceptible to serious infections like pneumonia, kidney infections and sepsis. I now have a new rheumatologist who says I definitely have lupus.

Atos say they won’t carry out ‘diagnostic tests’ but they did.

In the appointment letter from Atos, it says: “The Health Professional will talk to you about how your health condition affects your daily life”. Much of this was covered with the council’s initial care plan report, but I did discuss my health issues and barriers to independence at length during the assessment.

The letter from Atos then says: “This will not be a full physical examination or an attempt to diagnose your symptoms.” 

My neck and shoulders are stiff, painful and I currently have limited mobility in them, yet I was asked to put my hands behind my head, raise my arms and so on. Loud joint cracking, popping, creaking and gasps of pain and my screwed up face didn’t stop the demands of what I felt was the impossible. I was actually sweating and trembling with the effort and pain, and still she did not stop the “examination”. I felt I couldn’t say no, as I would have seemed somehow unreasonable. I kept thinking that if I tried, gently, I was at least showing willing, and that would be okay, but unfortunately I wasn’t. 

It’s difficult to equate these artificial manoeuvres with day-to-day activities, and therefore it is also difficult recognise the impact it would have on my mobility limits before I tried them and to gauge how much a movement in isolation is going to hurt. 

Immediately following the examination/tests, my left calf has inexplicably swollen to twice its normal size, I could feel the uncomfortable tightness in it, and the swelling was visible through my jeans, whilst still with the assessor, and I commented on it.

My pain level has significantly increased everywhere. I had no groin or neck or elbow pain when I arrived until I was asked to do activities that were beyond my capability and that caused me a good deal of needless pain. I felt undignified trying to do those tasks, shocked and dazed at the pain, and sometimes, at how limited my movements have become. It was an extremely distressing and dehumanising experience. I was also shocked at how the effort made me tremble and sweat, and at how my clear distress was completely ignored by a so-called “health care professional”.

Of course I am going to make a formal complaint about this. It shouldn’t cause people so much pain and distress to be assessed for support. And any examination part of the assessment ought to take your medical conditions and descriptions of mobility constraints fully into consideration without such a grueling and painful examination regime.

It is worth bearing in mind that in addition to my own account, medical evidence from my rheumatologist was submitted in advance, and a report of recent assessments by a council occupational therapist who prescribed aids and adaptations, which clearly outlined my mobility difficulties, following two assessments, was also submitted. This was a report written by a qualified professional and was based on her own examination of my level of functionality and mobility while I tried to perform directed tasks in my home, such as climbing stairs, preparing food and using a bath board in my bathroom.

The fundamental difference between the assessments is that the one for my care plan allowed me to undertake tasks at my own pace, with dignity, and the Atos assessment did not. The former also felt like it was a genuine assessment of my needs, with support being the aim, whereas the latter felt like some sort of skeptic’s test to see if a way could be found to claim my account and those of my doctors were somehow incorrect. The Atos assessment was so horrifying because it felt like it was about reluctantly providing support for maintaining my independence as a very last resort only. 

According to the government’s PIP handbook, for a descriptor to apply to a claimant they must be able to reliably complete an activity as described in the descriptor. Reliably means whether they can do so:

 safely – in a manner unlikely to cause harm to themselves or to another person, either during or after completion of the activity.

The descriptors at no point demand that a person completes the Phalen manoeuvre or squats. The brief and painful completion of raising your hands above your head does not demonstrate either a fluctuating ability to do so, or your ability to hold your arms up long enough to, say, wash your hair and rinse it, even on a good day. Nor does it adequately account for severe pain, profound fatigue, coordination difficulty and breathlessness that often impact on any performance of that task. I did point this out, and the fact that the activities had left me in a lot of pain.

It’s now the day after my PIP assessment. I am still in a lot of pain with my joints and tendons. I feel ill, anxious, depressed and I am still shocked and angry. I can’t even manage to wash today. I have also developed pain on the left side of my chest, which feels rather like pleuritis. I feel really unwell, profoundly tired and haven’t felt this bad since my bout of pneumonia. The assessment hasn’t made me ill – I was already seriously ill. But it HAS exacerbated by symptoms. 

No-one should be made to feel worse because of an assessment for support. The activities I was asked to do should have been stopped when it became clear I was struggling. I stated I was in pain, I was visibly sweating, trembling, weak and clearly in a lot of pain with the effort, and as a “health professional”, the assessor should have halted that examination. I am very concerned that unintended harm may be caused by assessors conducting examinations because they do not have qualification, sufficient information or understanding about patients’ conditions.

My condition, for example, has left a trail of individual symptom diagnoses and medical data that goes back many years. With such a complex array of joint and tendon problems, I felt that there was absolutely no consideration of the impact that, say, a hand and wrist manoeuvre may have on a person’s damaged shoulders and elbows, as well as their wrists, or how a neck movement may impact on an upper spine injury and inflammatory shoulder problems, as well as the neck.

Given the assessment report I submitted and medical evidence, in addition to my own account, I feel that such a painful physical examination ought to be restricted to cases of absolute necessity. I don’t believe those simple isolated movements I was asked to do can possibly demonstrate he complex limitations on my day-to-day independence, and how I manage (or don’t) to cope with domestic tasks and general mobility.

The fact I couldn’t do some of them was both traumatising and humiliating, as well as very painful. I am still in a lot of pain as a result. 

The shame of being there to explain to a stranger about your illnesses, the intimate details of your life, your vulnerabilities and why you need help, is difficult enough, without the added distress of being coldly assessed by someone who doesn’t understand your conditions and does not care that what they ask you to do may be traumatising, painful and potentially very damaging.

Image result for PIP disability

Related

What you need to know about Atos assessments

Government guidelines for PIP assessment: a political redefinition of the word ‘objective’ 

Government subverts judicial process and abandons promise on mental health ‘parity of esteem’ to strip people of PIP entitlement

Tory MP says PIP should only go to ‘really disabled’ people, not those with anxiety ‘taking pills 

Disabled mum took fatal overdose after she was refused PIP

Fear of losing disability support led a vulnerable man to a horrific suicide

Theresa May euphemizes savage cuts to PIP when confronted by an angry disabled person demanding democratic accountability


 

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125 thoughts on “PIP assessments are dehumanising, degrading, very distressing and potentially harmful

    1. This ASSESMENT is degrading and needs to stop, what us people should do is to get together and demonstrate that we have all had enough of these assessments and they should be banned. Even when you do have proof the overlook evidence from hospitals and doctors. This is just not on. There must be away that we can put a stop to these humiliating assessments.

      Liked by 1 person

      1. There have been protests against this degrading system since the welfare “reforms” of 2012. No-one is listening, except the Labour party. They have listened to us and fought on our behalf.

        Liked by 3 people

      2. Totally agree I had the consultation I felt degraded and in have proof from doctors and as you say they are not interested very sad state of affairs.

        Liked by 1 person

    2. I had a pips assesment. And they make you feel degraded, Ashamed, Disrespected, and that you are lying. I suffer with servere depression and got reduced to tears. One of the doctors said. I can stop acting as it dont effect the decision. Absolute disgraceful service. And im due back again in August

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    1. Is this true, re.artical 3 of the human rights act. How can any one assess a person that dose not know your medical history, and then override what you say, this has to stop. If this act is true can you refuse to go to one of these assessments.

      Liked by 3 people

    2. Yes I do .I run an advocacy service for drug and alcohol clients and they go through the same . They are blanket failing our clients concentrating on the physical and not on the mental side therefore deeming every one fit for work. They then rely on our clients not being compas mentas enough to fill in the mandotary reconsideration forms leading to an appeal , which we will attend too. Our clients also feel further demoralised .

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    1. My name is John I’m disabled i have spinal abbiffita and can’t walk much but on the assessment they didn’t believe me they said lies about me saying i was doing exercise on the assessment which wasn’t true. So the last 10 months i been struggling to live without a car i am now housebound.

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      1. I am so sorry to hear that John. You can try and apply again, try and get some support from your doc, and if you need help with an appeal, there are lots of us here who would be happy to help x

        Liked by 1 person

      2. Hi John I am in the same position I can’t walk 10 yards if I try I have angina attacks witch lead to other problems I am waiting for a tribunal date to state my case I have many professional People on my side but does not mean nothing to the dowp.

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  1. Hi Kitty, I’m so sad and angry at what you have written. There is no way any HCP should demand you do the things they were asking of you, especially as it caused you so much pain, let alone the psychological trauma. Do you know what qualification the person had? You are entitled to know and can complain to their professional body. If you need help please contact me privately- I’m happy to support you.
    This whole system is so wrong in so many ways.
    Sending you love & hugs, again if you need some support, please PM me.

    Liked by 5 people

      1. I received a copy of my HCP report after being awarded only 2 points by the decision maker for PIP. I’ve requested a Mandatory Reconsideration on the grounds of the many inaccuracies in the HCP report. Out and out lies actually and my brother in law who was with me can attest to this. Also the feelings you described were comparable with the way I felt. Much pain both within the examination and for about four days afterwards. Unfortunately I can see this going to Appeal. Ironically I only applied for PIP on the advice of my ESA assessor.

        Liked by 1 person

      2. Srry to hear that, Susan. I have experienced Atos “reports” previously, when I claimed ESA, and it’s a very common experience that they are full of lies and inaccuracies. I expect this time will be no different for me, too. But I will also be appealing.

        I applied for PIP on the advice of an occupational therapist who works for my local council. I was referred to her for an assessment for some aids around my home to help with my mobility so I could cope better.

        The only choice we have is to fight back and appeal, I think. There’s quite a high success rate, though. Which shows how much of a sham the assessments are.

        Liked by 4 people

    1. They will try to get most to these silly little twirls bend arms it’s a curse to those who feel the pain’s going through them but iv refused every one at assessment for pip esa has like you they bloody hurt more people’s need to refuse has its a crime atos capita maximus are all the same head of the dwp faces these highly trained nurses hmm will lie extort false words they use anything to bend ones words to fit their lie they will tell on the assessment sheets you on the right track chasing these devil’s through their companies they work for and their union but have you Sar all they used in assessing you has this will give you the armination to attack their lies jeff3

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  2. Hi Kitty

    These assessments are dreadful and I feel for you. They should have taken your medical evidence and never called you in.

    At least you have been able to share your experience. I worry for the silent thousands that are being poorly assessed each day

    Bless you

    George

    Liked by 5 people

    1. Thank you. Yes, I also feel for those people so ground down by this awful experience that they struggle speaking out. I’m a writer, but it has taken me since last Thursday to finish this article, and another that was almost ready to publish last Thursday. The assessment has really taken it out of me, and I am very angry that it’s set me back so much

      Liked by 4 people

    2. I myself had two. Knee replacement plates in my feet hands had so many surgarysi can’t use them to good as I wear special made plasters to keep them from moving and bending and waiting more surgery I was so mad ask to jump up and down clap my hands how I wash and I going th is depresoin with all the every day life I got to do on my own ad all my family live away I Dont go out ever I. Was made to feel bad and she keep saying u got lovely skin for your age said I have always keep .myself good what was that to do about my illness or how I cope myself I got taking of all I am 66and all this has gave me no hope in this word now by way I was judge by them

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    3. I have recently been for my pip assessment as I am partially sighted , partially deaf and have epilepsy the lady I saw seemed nice and understanding the interview seemed to go well but on receipt of the letter they sent me they said I was seen walking down the hospital corridor unaided not using my white guide stick properly so because of this they decided to stop my benefit

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  3. One more argument to sweep away the unfair and nasty benefit system and replace it with a Basic Income system.

    The world of work as we know it will cease to exist within 30 years – we need to be preparing for that and my MP has told me that ‘they’ are not looking at any Basic Income alternative to the present system.

    This is urgent, change must come.

    Liked by 3 people

  4. pip is a con they dont care or know your health risks as long they get paid the amount of things i have wrong im classed as fit for work tey need to get there fingers out and and get it right and not tell people they are fit

    Liked by 1 person

  5. I’m so sorry you had to go through this and i hope you get the award you deserve.
    I know from personal experience that these “assessments” are both degrading and humiliating. I declined to do the physical side of the PIP assessment and made it very plain that i knew it was within my right to decline as it would cause me more pain and discomfort.
    As for ESA i could write a book about my abject pain, humiliation and tears there. I had 3 ESA forms in 12 months and it nearly tipped me over the edge. I was put in the SG, 14 weeks later another ESA form, SG decision letter, then 19 weeks later another ESA form, same SG decision, then 12 weeks another ESA form.
    It all proved too much as i was also due to have eye surgery and I ended up in A/E with a suspected heart attack after the 3rd ESA form in a year and being told they expected me to attend an assessment 3 days after quite serious surgery on both eyes, ( 2+ hours away by public transport and walking each way), such is the cruelty of this vile heartless system.
    And that is the tip of the iceberg.

    Liked by 6 people

    1. So sorry you went through all of that, Jan. You should never have been made to attend an assessment in those circumstances.

      I had a similar experience with ESA, ended up having to appeal. Ended up very ill because the strain exacerbated my illness. xxx

      Liked by 1 person

      1. Kitty, having read of your experience, I’m dreading my PIP assessment. I filled in my form, but had no supporting paperwork to send. I’m not under any hospital consultants, but I am being referred to the hospital physio – no idea how long that will take though.

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      2. Perhaps you can ask your GP for a print off of any notes he/she has that are relevant. But Atos claim that the diagnosis is not as important as how your illness/disability impacts on your day to day living. So it shouldn’t matter about not having a consultant yet. And you’re being referred to a physio.

        You can learn from my experience and if you think any activities you are asked to do, you can refuse, telling the assessor it would cause you pain.

        Best wishes for your assessment. Try and see my horrid experience as a learning opportunity. It’s always best to go prepared, and to know what to expect. Good luck

        Liked by 3 people

    2. My mother suffers from depression she went to the assessment. After being asked what had stopped her killing her self. She further interrogate my mother and told her that she didn’t we were both gob smacked. After we came home my mother was very upset. then came the pip points letter all 0 points my mother felt suicidal. they have made my mother feel worse .they degraded my mother and took her points. On top of everything they said my mother does not need her mental health monitored we are absolutely disgusted with this but know the government has allowed this to happen .

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    3. My mother suffers from depression she went to the assessment. After being asked what had stopped her killing her self. She further interrogate my mother and told her that she didn’t we were both gob smacked. After we came home my mother was very upset. then came the pip points letter all 0 points my mother felt suicidal. they have made my mother feel worse .they degraded my mother and took her points. On top of everything they said my mother does not need her mental health monitored we are absolutely disgusted with this but know the government has allowed this to happen .

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      1. I am so angry that people are left feeling worse because of these assessments. So sorry to hear about your mum. This is why I voted Labour . They would have scrapped this unfair and distressing process xxx

        Liked by 5 people

      2. I suffer with mental health I did get awarded pip but had someone with me from mental health team .But before going for assessment I was suicidal it caused me to self harm again ! So stressful makes you just want to end your life ! I think this “TORY GOVERNMENT ” needs to go there MURDERS! !!

        Liked by 1 person

  6. My heart goes out to you. I’m waiting in dread to see if they’re going to pull me in for assessment after completing the form, especially as we have so many symptoms in common. Can I ask you how long it was between your sending the form and getting a letter with the assessment appointment? I sent the form (just in time) towards the end of March and have heard nothing since. I can’t bring myself to ring to see what’s happening because of PTSD. My sister-in-law has, bless her, offered to ring them on my behalf. Having moved to the Isle of Wight a year ago, I’m in the position of having a whole new set of consultants and a new GP so I’m terrified there won’t be enough specialised information from decades of treatment. My health, such as it is, has collapsed even more since I came down here and I now have a leaky heart valve which has to be operated on! As you will know, knowing these things are always a possibility with Scleroderma, doesn’t make it any easier to deal with. Hey ho! I try to keep smiling. Take care, Sue.
    Sarah

    Liked by 2 people

    1. Hi Sarah. Sorry to hear about all of your health problems. I understand ony too well what new consultants mean, and often there’s a lot of old ground re-covered to conform a diagnosis, especially with connective tissue diseases. It’s ridiculous. Old reports go missing, different consultants have different approaches and interpet tests and symptoms differently. Having to change rheumatologists is the main reason why I haven’t applied for PIP before now.

      My application went in in mid April. I had support with the form, someone from the council filled it in for me.

      My microvascular study for Raynaud’s turned up some vascular changes usually associated with scleroderma, but that does occasionally happen with lupus, too. Have really nasty acid reflux too, which is a more recent symptom.

      Hope you have your award without assessment, and hope it goes well.

      Take good care, and good luck x

      Sue

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      1. Thank you, Sue. I’ve had acid reflux for years but I was really surprised with a test down here that showed the ulcer was no longer there. Hasn’t reduced the reflux, though! If only people understood how complicated auto-immune conditions are. I now have Sjogren’s and the dryness of eyes and mouth is just appalling. And a British summer has given me several painful calcium lumps. Bless you for your comfort and support. Fingers crossed for both of us.
        Sarah x

        Liked by 3 people

  7. How do I get a copy of the atos report please on behalf of my son? I was his appointee until they cancelled his dla and not awarded pip

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    1. You have to ring up and ask for it. Are you going to ask for a mandatory review? Try ringing the DWP to ask for a copy, failing that, the compay that carried out the assessment. If you appeal, you will need the assessment report.

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    2. You email or letter to dwp Sar all they used in your assessment there are tenplate letters on this site Dsiel.org but Sar you must has you have the decision makers notes scores and the very highly trained hcp ops but ask someone will point or help you jeff3

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  8. I know how you feel. Felt completey miss treated and humiliated. She told so many lies. And when asked if i felt suicidal or not worth living her reply was “why havent you tried anything yet”. Have spondylosis in back and nerve damage. In constant pain cant stand or sit for more than twenty minates. Waiting for tribunal date.

    Liked by 2 people

    1. Good luck with your tribunal. I’m the same, can’t sit ong, can’t stand long. I have mild spondylosis, but also have spina biffida occulta and a disk prolapse that happened in my early 20s and never healed, still get sciatica with that. I have other problems with lower spine and hips and also, my neck.

      I’m glad you’ve appealed and want to say very good luck with it. You have a good chance of winning as many appeals result in the DWP decision being overturned.

      I will probably have to do the same. But we do have to challenge such an unfair and loaded assessment system. All the very best x

      Liked by 1 person

  9. I have recently have my assessment, the lady came to my house. Was quite ashamed when I had to go to the toilet and had to call my husband to help as he always does. I could not sit still because of the pain and then after an hour they wanted me to do stretches and exercises. By the time she left I needed to go and lay down. I have been going through these assements for nearly 8 years now. They never get any better and my condition has always deteriorated over the years. Horrible times xx

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  10. My son is paranoid shcizophrenic.he was sectioned but came out last year.he thinks hes the devil,a 1st world war soldier,a yorkshire man and an alien being with vastly superior powers.he does not recognise me as his mum but as a deformed grotesque monster and has broken my ribs twice.i had to have a panic alarm off the police & a banning order for 6 months which has now ran out.he was on dla but now needs to go onto pip.my ex his stepdad is the only person in the world my son talks to.he never goes out as he sees signs everywhere and CIA agents.he refused to see the doctor after having a psychotic episode in the surgery.his psychiatrist refuses to see him.he smashed his television up and the radio and his fone.he sits with massive head phones on to block out all sound and talks to the devil who lives in the corner of his room.he nearly burnt the kitchen down after he forgot what he was doing and melted the toaster as he fell asleep.he will not have books magazines or anything like that in the house as like all food packaging they are sending messages and food will poison him.he sits for days or drinks till hes comatose.he cries on his knees kill me now then he can hear the birds who tell him important things.the gangs and junkies in his street have robbed him and beat him up.my ex doesn’t even know if he can fill in the form for him but we have sat here at a loss as what to do.hes on 3 medications but no back up medical proof.his life is one long living hell and ive had a nervous breakdown at whats happened in the last 2 years.what if they want to see him at a medical.he will not leave the house or even look into anyones eyes as they are either sorrowful angels or demons.the police up to last year took him home on numerous occasions after finding him beat up and miles from home but he’s never been sectioned again.very rarely he talks to his stepdad like a normal 44 yr old then only has to hear a remark and is under persecution.how does my ex write all this..in what boxes.we are desperate.these degrading tests are inhumane and terrifying.im crying now as i feel so hopeless and helpless and im on the point of finishing it all.i can’t bear his suffering and i can only see it getting worse if he loses pip or esa.please can you help..anyone at all,just any little bit of light at the end of this dark cruel tunnel.

    Like

    1. I am so sorry that you have no support. Your circumstances sound impossible. I hope you can get some support from your GP. Go and tell your doctor what you have said here and ask for support, because no-one could cope with your situation.

      You can use the report of when your son was sectioned, and can ask your GP for a free print out of that, for evidence to use at an assessment, and write an account of what your son’s illness entails. One thing to remember is that on the boxes, if your son can’t do things “reliably, consistently and safely” then he cannot do them at all according to the definition used by assessors. Make that clear.

      If you need to talk, I run a group on Facebook and if you want, I can add you to that. It’s a secret group where people are safe to talk without anyone seeing their comments. Also, you can talk here anytime you need.

      Hugs and love. Anything you need support with, ask. xxx

      Liked by 3 people

    2. Hi im crying also reading this,i hope and pray for your son that he gets his pip/esa.i also suffer terriable and depression barley leave the house im in chronic pain with my back after 2 ops went wrong yr gone april,i now have fibromaglia sorry im not very good at spelling,this system is discusting we are tret like animals,i lost my pip yr gone jan,i was in such a state tge lies and the way i was tret was appayling,i applied lost that ,the judge was awful they just think i looked ok that im ok,they just wouldnt listen i have aids put in my home to help me,i had reports off consultants i was heavly medicated and in such a state but they just dont care,my next step was upper tribunal i didnt no where to turn or even no how i could prove things they said werent with in the law,if you no what i mean,long storey short i felt only way out this hurt nd pain and suffering was to end my life,i kept hearing in my head what they had said to me over and over,luckly my son found me in time all threw these evil thoughtless people how dare they do this to people and get away with it,jan this year my pain managment team told me to apply for it again,i said i couldnt physically and mentally go threw this again,but my son filled the forms in it made me ill again,i had all letters off pain mangment etc,explaing my chronic widespread pain,and exhaustion etc,also letters off my phycholigist about my mental health,they refused a home visit cos my son said on my form i sumtimes loose my temper,which who wouldnt given my pain nd fustrastion anyways they said it would be to much of a risk to them to come out to my home,this made me ten times worse what the hell did thet think i would do?i cancelled my first assessment i just couldnt get out of bed,attended the sec one and if im honest i stepped out my bed my daughter in law helped me get dressed i wouldnt let her brush my hair etc cos i didnt care any more i was sobbing my heart out when i arrived at the assessment centre not one bit of sympathy from them,so the girl started asking me questions that didnt even relate to my condtion i was getting more nd more stressed kept repeating myself over nd over again,at one point i said does anyone you no suffer anxiety and depression her answer was yes,well i said then surley you should no what its like,she then went on to say i have to examine you?i said if you read my medical notes and you no what fibro is then you should no how this examination would cause me so much more pain and distress,so i refused it,she kept talking about my old pip form i kept telling her you must be reading the wrong form but she denied it,i left in a worse state id went in,waited nearly 3 wks for there answer,i got it back which i was so suprised on my award it didnt once mention my fibro i got low rate on both,my family told me to question this but i honestly couldnt face all the hazzle so ive just accepted it,i no i shouldnt have cos sum things she put in were total lies,ive been awarded it for 2 years but it says i need to go for another assessment in may next year?how is this my son asked them,they said because they send for you a year before hand cos they always have a back log.im as stressed as ever and my condtion has got worse but im scared to ring them and tell them this for fear of them taking it away.they are evil atos.

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    3. Denise, get the GP to write a supporting letter explaining that your son would not be able to be assessed in person and ask for a paper based assessment. Even if he’s not currently seeing the psychiatrist t doesn’t matter, he has a condition that isn’t going to get better so the diagnosis is still the same as when he was in treatment. there is space on the PIP form to explain everything you’ve said here.
      I wish you luck, I was in the same position with my son. xx

      Liked by 3 people

  11. I had the same experience of a HP who said that she was a trained mental health nurse assassins my physical conditions. My advocate was the manager of my councils
    Victin support unit. He interrupted several times to point out that she had not typed what she had just heard or observed. She did not reply she just glared at him aggressively and continued. I went from having a lifetime award of DLA high rate mobility and med rate care to 0
    Points for PIP. She had lied on every single question and made up some statements such as “he walks his dog” and “he does his shopping over the internet ”
    I made a formal complaint to ATOS as did my advocate. We received standard replies saying all their HP’s are well trained and Indifferent
    When it came to making a request for a statutory reconsideration I learned that my doctors
    Letters “had not been received ” so I asked her to delay the reconsideration until the letters arrived. She agreed and then went ahead with her decision the very next day.
    The first tier tribunal requested documents used as evidence from the DWP. They ignored him and my hearing was adjourned 3 times. Then another hearing was set up but having had no money to cover my expenses for over a year and having lost mY car days after the
    Original decision together with my carer who I could not afford to pay my conditions had deteriorated to the point where I was housebound, covered in cuts and bruises and suffering from malnutrition. Most of my teeth had been knocked out from falls and I had a broken leg. This at least got me some home help for six weeks from the NHS. I had a OT from the local council but she decided that I would not require support once my leg had healed. Anyway I had written to the tribunal judge explaining all of this and requested a hearing that I could be involved with by phone. This was noted and ignored. By now I had 4 doctors letters supporting my claim but the judge said he had put the greatest weight on my original ATOS assessment and on the advice of his medical expert who had never seen me
    I did gain 8 points for mobility giving me £21 a week. That lets me take 1 trip to the shops by taxi so isn’t much help. Then the DWP decided to deduct £23 pw by shifting my ESA front work related to contribution related so they could steal a small pension I had because the company recognised my illnesss and gave me an enhanced annuity.
    I am 3 months out of time to go to the second tier because the language used is technical and legal. You are advised to get a lawyer but there is no legal aid for this and I can’t afford to pay one so I’m stuck.

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    1. Omg this is aboustley appauling,im so so sorry these evil people have put you threw so so much,whats happened to human rights?you no what they wouldnt tret a animal the way theve tret you,and what gives them the right to believe these assesers that have no knowledge of our illnesses,i mean sum of theses so called assersers are nurses,since when does a nurse or physio etc no better than a highly qualified consultant,shows you theses assesers werent very good in current roles having to work for atos etc,i no what you mean about upper tribunal cos i didnt no how to prove things in law aboustley pathetic,so wish i could do sumthink to help you,im always here if you need a chat xx

      Liked by 2 people

      1. Barbara writes she give up claiming that’s who they want us to please don’t give fight back the Internet over the last 9yrs has caught on about these esa pip assessments there’s plenty of sites that help you freely jeff3

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  12. This is my story as well.

    I have been atosed and they deem me fit for work. The asser was half an hr late seeiving. She answered most of quwtions for me. And marked me low so i failed The Test.

    I have had fibromyalgia since 2007 . It was a member od loxal coincil who told me to apply for pip.

    So i dis.

    And got it foe 3 years and a blue badge. All now gone. And allowance with it.

    I appealed of course!!

    But the couet threw it out on the grounds pip woamn said i could walk a dog gsrden and look after my mother .

    Well yes but i still have fibro. I can walk my daughters dog yes but why would i want to atay in all day ive done that for ywars on end. I now have found a homepathe who treats me with medicine not on nhs i have to pay. The fibro was caused by an op i sisnt want by the way. To remove my ovaries. I wanted them left alone but specialiat wouldnt on geounds i have 2 kids already.

    So anyway i went into full blown menopause after op they disnt even treat that for a year.
    had hot flushes and fainting
    fits
    All the time.

    Went also thro divorce and redundancy all this can cauae fibromyalgia anyway.

    So….. rhe p i p benefit well i dont get it now 700 short a month plus 200 feom a losger just moved out. Live on esa and c a now for mum. Shiuls i stop csring foe her i wonder Errm no. im an only child so no real ootion mum is 85 and has ostephrosis

    Waiting now for court case plus new dr to give me a medical to tell them i definetly DO have FIBROMYALGIA.

    Beat wishes to all those goinf thro same. I do sympathise

    Angela hammond x

    Liked by 2 people

    1. Hi angela i no how fibro can take away your full life,as it has with me i feel 90 sum days abd im only 48,i had 2 bk ops a year gone april that went wrong,i had no help at first untill nov last year i went to see a pain managment team they have done so much for me,they have sent me to diffrent consultants to rule things out i went one mon and by the wed i had 3 diffrent appointment to attend,one was with a rhymatoligist sorry i cant spell,it was them that diagonised me with fibro id never heard of it in my life by god the exhaustion,pain memory loss,depression cant sleep list is endless so i really feel for you,i pray you get your pip back theres a new law apparently been brought out saying fibro is a disability for life google it and try and print it off,take care hopefully speak soon x

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  13. Neil b I had pip assessment in 2016 with Capita in Walsall I have heart problems lung problems.Arthritis in kneck hands knees and plantafatinitus in feet.And had feet and knee injuries from falling 8 ft from a ladder.2016 June I went.I have wheezing and breathing problems too.Can not climb stairs and any walking not only causes pain but breathlessness as well. Interview started female person started typing.I showed her all medical evidence and medication. She started to ask me what I can and can not do.she said do this and that which I said would cause problems. Every time I started to tell her anything she kept saying I will come back to it later.It never happened after 20 minutes she said ok your time is up now.she never cover or listened to me.I lost pip.So I appealed and commented on her attitude I stil go t turned down listening to her side.with arthritis in hands and knees wife helps me a lot.she opens bottles for me cooks helps me in and out of Bath etc.I was only awarded 1 point.So I took it to court then won 10 points so got disability pip lower only.I produced more evidence which they looked at but would not use.I got awarded only for 2 year so lost 6 months Although I got back pay. I now also have sleep disorder so have to wear full face mask and CPAP machine at night permanently.I fall asleep a lot anytime anywhere.And Also with breathing problems giving me oxygen tanks to use for walking and climbing stairs etc.My pip renewal due 2018 dreading it.knowing having to go through it all again.Hope other people get easier.

    Liked by 1 person

  14. It disgracfull that you had to go through that. I have on going mental health issues. I have disgnosis from my doctor and my physcrist. I have problems still being diagnoised such as fatigue issues. But i have a social phobia, ocds, depression i was given a diagnoisis of cyclothymia but they are still looking into if its more than that , even though i have the diagnosis. Because i turned up to my pip appointment, i have to have tablets to calm me in the car so i can travel, The assor put in her report as i turned up and spoke to her i have no issues when they had all my medical details. On my esa assesment i was left on my own in distress in a corridor for two hours over my appointment time, when i went in the assor was typing as i was talking so thought she had typed what i had answered which took awhile as i was adgitated. A few weeks later i got the report.. the assement was done by a phsyiotheripist not a mental health nurse… she had put down i can get round with no help when i gave her a list of medications i need to travel, said i was happy on my own there when i was distressed and asking her to leave. The list of what she ‘missinterpreted’ was long. I was also told that my mental health issues would only last 6months!!! Ive had them 15 years already!!! The way people with physical and mental health issues are treated is a disgrace, Its made my mental health issues worse. Im still going through the motions of appeal but all my money has stopped so needless to say my stresses have worsened. I hope everyone on here gets a good outcome to their issues with these agencies.

    Liked by 2 people

    1. Good luck with your appeal. I agree that people with mental health problems are treated worse than people with other problems, and I can’t see how an assessment like that can possibly determine how your mental illness affects your life. This said, people with other conditions are also treated badly. It’s a “parity of contempt”, not esteem. The government tell some whopping lies, that’s for sure

      Liked by 2 people

  15. I have severe Rheumatoid Arthritis (since 1999), Osteoarthritis, Sleep Apnoea, Type 2 Diabetes, PTSD and the usual blood and cholesterol issues.

    At my assessment I was asked to do the physical ‘test’ and when I said that I couldn’t do this or that bit the assessor asked if I was refusing to do the tests. I was asked to bend my wrists up and then down. I told the assessor that I will show her how little I am able to move my left wrist but I am unable to move my right wrist as it is fused. Again she asked if I was refusing to do the test, I repeated that I was unable to do the test because of my fused wrist and I asked her if she knew what that meant and eventually she admitted that she had never heard of such an operation.

    I was awarded lower rate care and nil mobility, I have appealed and that has been refused, I am now going to take it to the tribunal. The assessment was carried out by a person who has lied about my ability to do certain tasks.

    On the DWP forms they threaten us with loss of benefits or even court action if we lie. What about the assessors who are lying on our PIP assessments?

    About 89% of assessments are refused of which 69% that go to tribunal are awarded surely Autos and Capita should be fined by DWP for the extra expense of the unnecessary tribunals. I understand that the occasional person would have to go through the tribunal but not the vast number that are currently having to.

    Liked by 3 people

    1. Glad you are challenging the decision. Yes, they get stroppy when you say you can’t do something in the examination part. But they don’t seem to have any regard for safety, so we have to have.

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    2. And your surprised re the lies?
      Atos are all very acommplished liars and PIP were dreamt up by the government to withdraw everyone’s cars and indeed payments. They knew some would go away with their tails between their legs and they knew some would fight the system. We have absolutely no chance against them!.
      To my last Atos assessment, I took a Lawyer with me, the man and woman knew he was a Lawyer and STILL they tried to lie their way out of reimbursement of my payments. I fought a galant interview and assessment and the outcome was, I received full reimbursement and got my blue badge and my eventual vehicle. I was awarded Life cover of all these and I know that this will be challenged at some point and I just hope I still have the resolve to go through it all again.
      Good luck to each and every one of you in the future, I feel for you all.

      Liked by 1 person

  16. Hi so sorry you had to go thru all tbis .i recently had all my disability payments stopped after being on them for 32 years .i have rheumatoid and have had it for 44 years which have left me with a lot of deformities to my joints plus replacements .have had triple heart bypass and also have chronic renal failure too .have been refused twice now for mobility it annoys me so much that these people that are assessing you have no clue .

    Liked by 2 people

  17. All of the tories will one day suffer an ailment or mental difficulties as well as a Toshiba workers but because they are like regimental robots towards society and by then there will be no care homes left no NHS maybe some space were they can reminiscent what they do have done to our needy society so sorry for your dignity ripped from you from a asos robot who obviously has no human compassion not only for society but herself or himself

    Liked by 2 people

  18. What these assessors are really saying is that all these doctors that have done years of study have no idea what their talking about, others a claiment would not be put through all this humiliation. It’s atrocious. A doctors letter should be all that is needed. Disgusting

    Liked by 3 people

  19. How is it that single people are given nearly a £1000 a month in benefits and have no one humiliating them to claim it. If their children are at school there is no excuse for not working unlike people who are I’ll. This is what needs to change.

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    1. As I don’t know everyone’s circumstances, I don’t judge them. Welfare was originally intended to meet people’s needs when they fell on hard times. It is no longer fit for purpose. Lone parents with children under 2 are expected to do work related activties.

      Liked by 1 person

  20. My husband had his pip stopped in April we are now waiting to go to court to try and win it back . we was lucky 3 years ago but he was on dla then got it award back but he should of got till December this year it does say it can stop 6 weeks before that date .
    He his worse now and on more medication then he was 3 years ago plus he has been given things to help him with is disability

    Liked by 1 person

  21. Ive been thru the same hell and embarrassessment as you did a d had a psychiatic male nurse do my pip assessment.He nade me do exercises like touch my toes which he wrote i did wen i cant even bebd at all as have titanium implants and a pigs cadaver in my back and am waiting for a knee repkacement.Im on tons of meds inc fentanyl and oxycontin and he asked me 2explaim what they were for_he had no idea they are palliative narcotics given to dying patients.He wrote i walked without a limp when ive got 1leg3incges shorter rhan the other.He said i did all the tests which was untrue.Ive had 1tribunal and tbey wanted my case notes and now ha e another on july4th.I am in chronic pain with fibromyalgia sciatica osteoarthritus tendonitus awaiting a knee replacement but i was deemed fit for work even throu im in paun 24/7and ny 13 yr old daughter has to help dress me and wash my hair as my hands are and wrists hurt so bad.I feel we should all get together and start a change the way pip is being sorted as what tbese assessors are doing is bot rigbt.I almost died in 2000 in the usa as a dr did a test on me and didnt wash his hand i ended up witb discitus 40+infections in my spine they counted inc ecoli strep strap and nany nore.My mom came to be with me and saved my life as was on 26mgs morphine an hr and i coukdbt eat as vomiting so much.I had been in usa12 yrs but had2return2uk as couldnt work so couldnt support myself.My lawyer in us said every dr said malpractice but would not testify as 1 of their own.On returning to uk ive gotten worse and am in bed the majority of the day.I think we should all get together to stop what is happening to peoole at these appeals and the lies that are put down without our knowledge.ive had to hire a lawyer who deals with just this work and he has had laws changed so will have a massive bill but worth it as after pip sorted we are going back onto my eesa appeal.If any1wants his nane let ne know money well spent as you can get it for life or3yrs.we should all get together to let raise the awareness of what is hapoening.Also you can demand your meeti g to be recorded on a cd.I knew nothing of this till i net my lawyer hes had 12 tribunals in 16days.let me kniw what every1thinks.The strss of all thia has made my pain worse and put me in deep financial trouble as lost my motorbility car and need a car now paid over 2200pounds in4mths to keep a rental car .

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  22. My husband has been gravely I’ll for many years and he had his pip assessment January 2016 at home. They found him fit for work when they had the report back off Capita…omg we were shocked he can barley walk is in constant pain 24/7 and needs help with care and mobility. He appealed and won his case but the dwp have applied to the court for a reason to there findings and we still have no idea what’s going on and weather he will get pip or told to find a job…the new assessment are a joke

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      1. I am blind and brain damaged since I was 17 I was put on high mobility and care I copying through help of family after along stay in hospital
        I recently got an interview and I have been dropped down I will never work or support myself again I am now 41

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      2. I hate the pip ..and they do to people….the people out there who just get money and there is nothing wrong with them…the people who need it getting turned down!!..

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      3. Don’t judge people, none of us are qualified docs and may not understand someone’s condition and the risks they face, or level of disability. It’s that attitude that has led to the assessment process as it is, now. “Deserving” and “undeserving” disabled people. No-one could get through that process who is “undeserving” because most “deserving” people are also being turned down.

        Liked by 2 people

      4. Anonymous says:
        June 29, 2017 at 3:18 pm
        I hate the pip ..and they do to people….the people out there who just get money and there is nothing wrong with them…the people who need it getting turned down!!..
        you doing the pointing like the gov want fighting amongst ourselfs while they cull the stock through benefits denial stop and think even thou they to you look ok there can and will be something you cant see its wrong to say they don’t desevrs it jeff3

        Liked by 1 person

  23. Two of my daughter’s suffer from fnd. Hazel and Cheryl. Two yeàrs ago she applied for pip, hazel was awarded enhanced rate. Recently filled out form again and granted three yeàrs enhanced rate along with an apology, stating they did realize this would be a long term condition. Cheryl on the other hand got turned down, we ended up first tier coúrt and was granted enhanced rate until recently after filling out form again to be turned down again. We will be pushing for a court hearing again. It leaves us in disbelief, how have they come to there decision. Same illness, same symptoms, same specialists.

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    1. It doesn’t matter how acute the illness is, they are simply going by numbers, nothing to do with what you are suffering!.
      Tisv purely a numbers game.
      Some get through but most do not, simple as that. You may as well roll the dice, that’s what they do!.

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  24. I’m currently waiting for my pip interview I was assulted 20 yrs ago & I was in a coma for 4 days
    My memory now has deteriorated so much I can’t hold any jobs down
    Im also a recovering alcohol due 2 my head injuries I suffered years ago
    I’m really worried about this I don’t get out unless I have someone with me 2 help pay bills go shopping because I cannot remember what 2 do or get
    Please advise me in anyway u can 2 help me get my claim

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    1. It’s bad isn’t it.
      I was attacked in Jan 2008 and it was a total stranger who decided to kill someone and he came across me kissing my sister goodbye on her doorstep following a walk with our puppies!.
      He fractured my left cheek, he got me to the floor and stamped all over my back, neck and spine. He weighed approx 26 stone in weight so consequently, did untold damage to my back and spine. He also broke 4 front teeth and broke my nose!. He told police in his statement, he’d killed me so, it was attempted murder but, in their wisdom, they charged him agravated assault!!!!
      He received 4 and a half hours community service and was told to pay me 500 pounds but, only if he were in no prior debt!!!!. What the 500 was supposed to do I’ll never know. The front teeth cost me 2,000 to replace and no, I’ve never received the 500 payment,surprise,surprise!.
      I’ve been under a pain management Dr ever since and have had x4 spinal procedures, alas none of them have had the desired effect. I have suffered with double incontinence since the attack and there’s nothing they can do re this either!.I cannot sit nor can I stand for longer than 5mins periods. My GP told me this would be a life changing episode and I thought he was being a bit dramatic, he was spot on!.
      Anyway, I was eventually injured out of work and that’s where it all went so badly wrong.
      I was driven down the ESA route and then when pension age eventually the DLA route. They kept calling me back and reassessing and fighting to stop all they had put in place!.
      I was eventually awarded a lifelong cover and a blue badge and a vehicle. I know it is all very precarious and when they feel like it, they’ll drag me back to try and take it all away,even though the paperwork all says LIFE!.
      They are now saying,there’s no such thing as a lifelong cover so, it’s any day now. I’ve never been asked to attend a PIP assessment, when I am, I’ll go and I’ll take my Lawyer with me again as I did when out of nowhere, they stopped all my payments,everything. I took them to tribunal and I won, including BA k payment!.
      This was all pre PIP though!.
      Take care all of you and try not to let them get you to down, u’ll need your energies to get through life,let alone DLA and PIP etc etc etc.
      Much love always
      LouLa belle Rose.

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  25. I suffer with severe depression and agoraphobia and I have tried to end my life on a few occasions, I have a chronic illness and was told that I would be on DLA for life …that was until the PiP form came through , I’m terrified , I looked at it and aside from the mobility ; I can’t manage day to day life unless my partner helps me , I know I will be refused as I didn’t give any evidence from doctors or health professionals, …im too scared to see any !
    I think this system is cruel and evil and how can politicians play hard and fast with people’s lives ? Im sure this will be stopped one day , it just isn’t human
    I’m feeling terrified of what my future may bring

    Liked by 1 person

  26. I had disability living allowance high rate and had a car for nine yrs. The girl came to the house axed a lot of questions then asked me to squeeze her hand , stand on one leg and that was it. I score nil on pip for both. The car went back and so did my blue badge. I took it to a tribunal and was awarded lower rate for help in doors .I have never had that. I still scored nil on the other. I have fybro my alga , meniars, a leaky heart valve, Angina, and partially blocked artery to the heart. I had to sell my caravan to buy a car. I was told by the D L A my money was indefinite. Now my Daughter has to go through it . She has mental health is yes.she has never worked and did three morning a week in school. The one benefite she is on has told her they are going to get her ready for work in eighteen months. She is on the lower end of the autistic scale and has a social phobia and low self asteem.It is worrying her to death because she has never been out on her own let alone work.The new cO I P is wrong. There is no give. The questions are mis leading. That is my rant over.

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  27. I have atopic eczema in my hands on take methotrexate weekly. I have to have blood tests every 3 months to make sure my liver is ok . Without this medication my hands are covered on open wounds and I cannot carry out daily tasks I. e . showering, washing up, hoovering etc. I have diabetes, arthritis. I was told by my surgery to apply for pip to enable me to pay for help with household chores. At the interview I took photos to show the condition in various stages I was told they couldn’t be used. I was turned down and received a letter saying they would contact me to appeal. 4 years later i am still waiting for that phone call.

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  28. Hi Kitty, I’m sorry to hear that you have been yet another recipient of the evil axis of pain.
    I have also like many have already said have been subject to this humiliation and I actually do not have any physical ailments, I suffer from severe post traumatic stress, anxiety and related problems yet I was still asked to do all the physical test’s that you went thought, Why? My symptoms are of mental health issues?
    Anyway as expected my current claim for benefits was terminated due to getting zero point’s, this was quite some time ago and thankfully I had a very good friend who took me by the hand and got me to appeal and I won.
    Now after reading your experience and that of others it is my firm belief that the system is not broke, not in the minds of this government anyway. It is now doing what they wanted it to do and that is to remove all government help for anyone who cannot help themselves! They have been help as far as ATOS are concerned by the fact that any self respecting HCP will no longer do these assessments because they are wrong and that leaves us with down right bad people and those who just don’t care as long as they don’t have to work too hard and they get paid.
    I’m sorry but at this point I’m going to be political (but I don’t see how you can’t be with this system) We need to explain to people in simple language that they can understand, that this government has to go and the whole system of government has to change, the only person I can see being able to do this is Jeremy Corbyn

    Liked by 2 people

    1. I agree with every word. Corbyn’s Labour party have a manifesto for disabled people. I’m proud to say I contributed to that via public consultation last year. The disability support is now about assessments that a designed purely to find easy was of denying people what they ought to be entitled to. I’ve worked and paid my tax, but for those who haven’t, in the 6th wealthiest country in the world, you’d expect a cvilised democratic government to meet the needs of all citizens, including disabled people. That is what a civilised society should do.

      The Tories have failed. They clearly want to dismantle our welfare state – the mark of a civilised society – cut by cut. People have died as a result of those cuts, yet still they continue. That is evil. And intentional.

      Liked by 2 people

      1. Hi, Kitty I hope you are beginning to get over your ordeal a little and feeling a bit better?
        You said something that made me this in your reply to my message, you said “in the 6th wealthiest country in the world” It’s not the first time that I have heard this quote but it has only just occurred to me that not long before T May took over from Cameron that we used to be the 5th wealthiest nation in the world. Has Cameron left the country and taken his offshore account with him?

        Liked by 2 people

  29. This article and the replies should be compulsory reading for anyone who still thinks PIP is fit for purpose. The experiences of people on here are absolutely heart breaking. Kitty, am I right in thinking this was your first application for an award and you weren’t coming from a DLA award? I only ask as there seems to be an unwritten policy to be stricter with new claimants and the success rate is considerably lower even when two people have identical needs and conditions. There also seems to be a lot of people who were on high rate mobility losing out, as well as those who have partners or families living with them Presumably because it’s thought if you have a partner then they can take the strain and support you, its nonsense of course, but a lot of the failed awards seem to fall into a few main categories. Another thing I’ve seen a lot of is people not getting the Severe disability premium. It’s for those on any level of PIP award for care (used to just be mid or high DLA) and its an extra £61 per week. You get it if you live alone and no-one is getting carer’s for you. It’s paid with your ESA and the DWP used to send out a form asking you to apply but they often don’t anymore and people aren’t getting SDP as they don’t know about it.
    I would recommend anyone applying for PIP to include as much evidence as possible and if you’re not under a consultant then get someone who knows you to write a supporting letter. And don’t be frightened of phoning the assessors up and making a nuisance of yourself, its a broken system, but sometimes the squeaky wheel does get the oil and they do sometimes make good awards. Good luck Kitty. x

    Liked by 3 people

    1. Yes this was the first time I’ve applied. I was urged to do so by my local authority, who have recently assessed me for aids and appliances around my home to help me with day-to-day living. I should have applied in 2012, but my experiences with ESA left me anxious and rather too reluctant to go through the same process again. But now I have, and will fight for it. I have been hrough one tribunal for ESA and won, will do the same this time, too.

      Yes, that makes sense – first time claims are probably rather easier to dismiss. Thank you for your invaluable information, I live alone, except when my sons are home out of term time – they’re both at university.

      Liked by 1 person

  30. So you’re not actually complaining about PIP, you’re just complaining about the assessment. You like the money, but you want it to be handed to you no questions asked. Well I’m not disabled, but I’d happily answer a few questions and touch my wrists together if it meant free money every month for the rest of my life. I’ve known two people getting disability benefit when there was barely anything wrong with them, if at all. One was finally caught out under PIP and their benefit was stopped. People like that are taking money away from the genuinely disabled as well as from the taxpayers pockets. That should make us all mad. So please stop moaning that you had to prove you qualified. Those of us that have to work for money have to sit through gruelling interviews just for a shot at maybe getting a job. If you are genuinely disabled then at least you know the outcome will be money money money.

    Like

    1. Firstly, I have worked all my life until I became too ill to do so. I had to give up a profession I loved, with a good salary. I went to university, studied, then did my Masters part time whilst I worked full time. I won’t have some random ranter like you trying to tell me or implying that I am “workshy”. I’m not. Nor are most people who claim PIP. I propose that it is you who is “workshy”, because you seem to resent having to work so much. Personally I am very sad about having to stop working because of my illnesses. But I would never direct that at someone else, unlike you. You can’t seem to contain your own spite and resentment.

      That decision to leave my job was very difficult for me, but a tribunal panel agreed it was the right decision back in 2011. To work would not only put my own life at risk, it would potentially have put others at risk, too. Not through any fault of my own. Being ill isn’t a sin, nor is it a “lifestyle choice”. It sucks. I’d like to give you a week of my illnesses, see how much you whine then.

      I caught a cold at work, and ended up with pneumonia and pleurisy more than once. My illness makes me more susceptible to serious infections, among other things. That’s before we start discussing the joint and tendon damage, nerve damage, bleeding disorder, lung damage and so forth. Then there are the awful side-effects of life-saving treatments like chemotherapy and immune suppressants. Not that I should have to endlessly explain myself to psychological thugs and bullies like you.

      Secondly, how dare you trivialise not only my own harrowing experience, but those of other many people who have outlined their own experiences here. You condone tests that cause distress and put people’s health at further risk. What a regular guy you are. But you’d be the first to bleat if you were confronted with the same. After all, you whine about the very idea of anyone else getting support. You think the entire world revolves around you, and can’t accept that not everyone’s circumstances and lives are the same as yours.

      PIP is supposed to help people remain independent, and that includes WORKING. It’s a support that isn’t means-tested, and people use it to live their life as best they can, independently. If they can work, they do. You really should check your facts before opening your peevish trap. PIP is supposed to cover the cost of adapted wheelchairs and vehicles, when that is appropriate. The government introduced PIP to cut cost, as it replaced DLA. Many people who were eligible for DLA can’t get PIP, many have lost their adapted vehicles and now cannot work. So your complaint that you have to work and we don’t isn’t a valid one.

      I have paid tax in good faith that should I become so desperately ill that I can’t work, there is provision to support me and I won’t be left in absolute poverty. That hasn’t happened. In a civilised and wealthy country that is pretty disgraceful. One of the reasons such support has gone is because resentful and vindictive people like you object to what they think people should and shouldn’t have, without having any knowledge at all about other people’s lives and circumstances.

      You make assumptions that are usually wrong, and whine about other people, yet are among the first to whine about the lack of support when you yourself need it. You haven’t got the forsight to grasp that illness and accidents can happen to anyone, including yourself, your loved ones and your children. You’re the sort of person who thinks that unless you need support, no-one else should have it. What a nice chap.

      You aren’t qualified to say whether people are disabled or not. And should learn to keep your unwanted opinions to yourself. Trouble is neither are the PIP assessors. They aren’t doctors or qualified to diagnose medical conditions. Part of my complaint about this experience is that the assessor knew nothing about my conditions, asked me to do activities that are potentially harmful for me, and which have left me more ill and in pain than I was before I had the assessment. That should not happen to anyone. The HCP’s doing the assessments have had a 2 week course in “disability analysis” which basically is about finding ways of ensuring people do not get support. I know this because I know people who have worked for Atos doing the assessment. There were also BBC and Channel 4 undercover documentaries showing that the assessment is a sham, and geared towards making sure people are not paid support.

      The whole process is designed to find ways of NOT paying PIP. You also assume people claiming PIP have never paid tax. That is also utter nonsense. Most of us have. Some people claiming PIP continue to work and pay tax. This said, for a few people, who are too disabled to work, I have never resented support for them, and where their own doctors have diagnosed illness and disability that excludes the possibility to work, I have NO problem with paying tax towards their support. It’s what decent societies do. No-one would resent people who are ill and disabled support who have an ounce of decency. You clearly have none. You think the world is divided into tax payers and none tax payers, and you are the centre of it. That is rubbish. You need to do a little self scrutiny and personal development work, pal.

      I AM “genuinely disabled”. It’s not your place to query that. I am seriously ill, I almost died earlier this year. The council, who have assessed me via their occupational therapy service have fitted aids around my home to support my day-to-day living, you know, like bathroom adaptations so I can actually take care of my personal hygiene, and so on. They recognise I am disabled. My specialists have provided evidence of the seriousness of my conditions. Yet I had to go through a painful and potentially harmful series of tests with someone who clearly knew nothing about my conditions. I left the assessment in much more pain, and in a worse state than I was in when I arrived for it. That is wrong and should not happen.

      Those who don’t get PIP are not “caught out”. The system is geared towards not paying them. Should they appeal, and present their case to a panel of two lawyers and a doctor, the chances are they will win. That’s because people are being unfairly denied their support.

      I have written about people commiting suicide after being refused PIP, because they are too ill to cope with their day-to-day living without support. This isn’t an uncommon event, either. People like you, who have no idea what you are talking about are entirely to blame for these deaths, and the reason why disabled people have suffered so much this past 7 years.

      The United Nations investigated the government’s policies last year, with respect to disabled people, and found that our human rights have been gravely and systematically abused. The UK is the first country to have faced such an investigation. That’s the 6th wealthiest country in the world, and a democracy that is excluding a group of people in consideration of their basic rights, you may be good with that, I am not and will never be.

      The Nazis killed disabled people in their own country first. If you ever wondered how the Holocaust happened, well it started much like this. Human rights are eroded, people think it’s justified and go along with it. They resent others. That’s people like you. Not me.

      Liked by 2 people

      1. Bravo Kitty! I’m going to copy this and print it out to have in front of my desk so I can quote you to any other peevish people. You write wonderfully well. By the way, I would recommend phoning the DWP forthwith as they can send you a copy of the ‘health professional’ report even before they’ve made their decision so at least you are forearmed. And yes, if you get the standard PIP care (which you certainly should!) you would be entitled to SDP as your sons don’t make up part of your permanent household. Good luck x

        Liked by 3 people

    2. Dear Sir

      I have recently been refused PIP after my assessment. I have multiple issues with my health which goes back to 1998.
      I (and probably all disabled people) would willingly give up every single penny of the benefits that I receive if I could have my health back. I have worked various jobs in my life and participated in many different activities. I have 2 children who I have never gone on bike rides or taken tree climbing or fishing or to any place of interest that involves physical activity. I have to take 12 tablets daily and 18 on a Saturday this does not include up to 8 painkillers a day. I have an infusion of Rituximab regularly (a side effect of this is PML). My wife has to cut my food for me and my wife and children help me get dressed in the morning. I would gladly swap places with you if you would like to try this ‘lifestyle choice’ that I have ‘decided’ to take.

      Liked by 2 people

    3. Mike – what should make us incensed is the fact that we live in a world that is resigned to an economic system of exploit and be exploited – including the most vulnerable, when wealth abounds in our grubby hierarchical, insecure, greedy and competitively driven society!

      Liked by 2 people

    4. For a start, DLA has nothing to do with employment status. It was intended to cover the extra costs associated with disability and enabled many people to remain in or to enter into suitable employment. Every man and his dog seems to have a tale of someone “claiming disability” who is absolutely fine, never worked a day in their life AND world tango champion, with a little light roofing as a hobby…
      Amazing.

      DLA wasn’t easy to get in the first place and PIP “assessments” are obscene. You are not disabled and have never experienced the process, yet think (I use the word lightly) it’s a piece of piss.
      My experience is of an assessor lying and completely ignoring the evidence right in front of them.

      Try putting your wrists in a certain position when the joints, connective tissue and/or nerve damage makes it impossible, excruciating, and/or leaves you unable to function for days.
      Or answering questions like “If you’re suicidal, why haven’t you killed yourself, or been arrested? Because it’s illegal.” True story, that’s how ignorant these people are.

      Did you know that pension fraud is at a higher rate than fraud for social security intended for people of working age with sickness and disability?
      Did you know that this system costs more than it saves AND still doesn’t catch the tiny number of con artists because they play the system?

      All it does is torture genuine claimants, line the pockets of the private contractors and increase the costs and burden on the tribunal system.

      I don’t know a single sick or disabled person who expects “money, money, money” for life. We just want a fair and decent system that provides the support (and I doubt it’s anywhere near as generous as you think (again, lightly) it is.

      I DO know that most disability is acquired through life. One accident, one illness, and it’s you, sunshine.

      So roll the dice. But be aware that sometimes they’re loaded and you won’t know that until they land against you.

      Go to Judgedbytheignorantland, do not pass go, do not collect £200 (enjoy Maximus, ATOS and Capita, you scrounger, hahaha!).

      Liked by 2 people

    5. What a heartless person, no compassion whatsoever, he should be ashamed of himself. Perhaps a better name for him would be Mike Blackheart, because that is who he is! I am reasonably well for my age, 81 but suffer with the random aches and pains that come with age. I well know, without any outsider assessment that there is no way I could carry out even a light job even for one day, let alone day after day. It is time this cruel Government showed some compassion. I just hope that these evil people eventually find themselves facing chronic pain that destroys their lives. If there is any justice that is what should happen both to rulers and their minions!

      Liked by 1 person

      1. Time for a Basic Income Guarantee so we can sweep away the nasty culture of some of those in the benefit administration system. So, 16 and over get paid the same flat rate, working or not until death. We’ll all be much better off, the economy will grow and so will jobs, because people can start their own businesses, it is the way of the future.

        Like

  31. I really don’t understand why letters from neurologists, consultants and GPS are not sufficient evidence for PPI claims….after all they know exactly what your medical limitations are, and are far more qualified than the agency’s representatives…

    Liked by 2 people

    1. because they have their script to follow they turn down 7 0ut of 8 in their assessments giving extra upsets their quota has its not looked at but becomes new evidence at your tribunal its all a game that helps them cull the stock they realy don’t want us

      Liked by 3 people

  32. I had a pip assessment and she only concentrated on the mental side of my health and didn’t want to know about my mobility and how that effects me the exercises she gave me was horrible asking if I can wipe my bum and that was it my pip has now been reduced because she only focused on the daily living and not mobility so I’m having to appeal it really stressful I’m hating it

    Liked by 2 people

  33. Been through a farcical PIP assessment where the report is inaccurate and sheer lies, basically not what actually happened and was said! My PIP was removed forthwith and points reduced despite my conditions supported by specialists and my GP had worsened. Attempts to ask how this conclusion was reached, report inaccuracies and explain their comments I was given wrong information and told to basically ‘go away’ but not answers even up to date. Tribunal approaching but I’m at a severe disadvantage not knowing answers to all my questions. The assessment left me in excruciating pain, resulting in ongoing medical intervention, which was so unnecessary. If one does not confirm to their orders, it is reported that “she refused to cooperate”. It is difficult to manoeuvre with such medical problems but they don’t care. I am almost 62, worked paying a full stamp for over 30 years full time until, whilst on the way to work a 35 ton HGV crashed into my vehicle head on leaving me requiring several spine, shoulder and hip operations and in constant pain, which has developed into osteo -arthritis and severe PTSD to name a few of my problems. Yet despite the medical professionals supporting my claim, I still am compelled to endure yet another court tribunal because of an assessor with no specialised experience in my complaints and decision makers who are not medically trained. What are we coming to, never thought I would be treated in this way, should have been retired if they had not ‘changed the goalposts’ for the retirement age!

    Liked by 1 person

    1. Good luck with your appeal. You are entitled to have a copy of the report, and recommend you ring the DWP and ask for it. They will have a copy, since their “decision maker” will have needed to see it to make a decision in the first place

      Liked by 1 person

  34. My assessor was an occupational therapist according to the report, though I worked out they weren’t a mental health specialist because they asked very strange questions about my treatment which totally threw me off. The one that short-circuited my brain was “So the community mental health team discharged you into the care of a psychiatrist?” which is complete gibberish if you have any idea how the outpatient mental health system works. Unsurprisingly I got zero on both the assessment and the MR, the MR said they ignored everything I sent in because it was “historical” – the evidence was spread over the last couple of years from several different clinicians and the most recent letter was 6 weeks before the date on the form, apparently that’s no longer relevant to a condition I’ve had for 11 years. I’m now hoping the tribunal will disagree.

    Liked by 2 people

  35. I have osteoarthritis in neck ,hips knees hands wrists and spine,I also had cancer of the rectum, which was removed, I now have a colostomy bag. I also have cancer in my pelvic bone which will never go away,I have been on da higher rate for 20 years I’m dreding my pip assessment

    Like

    1. Please don’t be worried, forearmed is forewarned and the best advice I had for PIP was to gather as much evidence as possible. If they’ve not yet asked you to apply then get in touch with your GP, preferably make a face to face appointment, and request a letter stating your conditions, explain how they affect you. Some GPs will charge for this, around £30 but it’s worth it’s weight in gold to have a comprehensive breakdown of all your issues from a professional. Your surgery should also print off a prescription list and a patient summary which lists all your active and past conditions. Join Benefits and Work; for £20 you get access to their PIP guides that take you through each question and give sample answers. There’s also a site called Fightback for Justice who, for a small fee, will write your form for you, come to the assessment and represent you at tribunal if necessary. They are victims of their own success (or, rather, welfare reform’s failure) at the moment and very busy. I didn’t have enough money for them to help with the form as its £40, but if you know in advance that you need the help then you can budget for it. They are very good and run by welfare rights lawyers and have a 98% success rate at appeals.. Of course, we should all be able to access help more easily but any fees are worth it as you will have peace of mind and not feel so stressed. The Disability Information and Advice Line helpline is very good too (0808 800 3333), and there’s often a welfare rights advisor attached to charities for specific conditions like the National Autistic society or Mind etc. MacMillan are very good too for welfare advice. No-one needs to go through PIP alone, there is help out there.

      Liked by 1 person

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