The UK’s ritual humiliation of disabled people – Part 2 The PIP interview

In an earlier post, I wrote about the process of withdrawal of Disability Living Allowance and the requirement for disabled people to apply for Personal Independence Payment (PIP), as I experienced it in caring for my adult son Paul who has a condition known as Williams Syndrome. Several respondents shared similar stories, and urged our party to adopt a much stronger care policy for disabled people, so far to no avail. (I was by the way mistaken in my claim that all PIP application notices had been sent out over Christmas and New Year – it appears that a rolling programme is in place and this was just when Paul happened to receive his notice).

As other respondents also warned, the PIP application form and subsequent interview deepen the hostile challenging nature of the process. The application form is indeed 40 pages long. Brutally, DWP specifically refuses to allow a PIP applicant to state a well-known, well-documented medical condition with known symptoms as a statement of need. So for example you’re not allowed to state conditions such as Downs Syndrome or in Paul’s case Williams Syndrome and then allow this to refer to all its known symptoms and detailed conditions. Instead DWP insists that the applicant sets out in detail all the distressing elements of that condition, from intellectual lack of capacity, physical impairment, to hygiene and continence issues. I completed the form, ending up choked with distress at having to specify this detail. 

Then the PIP interview itself. It was taken by a paramedic, who was a kind and caring person, but addressing a condition far beyond the knowledge of someone with paramedic qualifications. The interview took 1¼ hours. It was extremely emotionally painful. Part of the Williams Syndrome condition is an impressive loquacious capacity which often contradicts true facts. A professional in the condition would have known this. I therefore had to constantly correct the responses. Trawling through detailed questions of hygiene and continence became so distressing that I had to insist that I speak to the interviewer alone. The part of the interview which required the applicant to demonstrate capability of physical movement such as bending to touch the floor, or showing knee reflex, was utterly humiliating, as such needs are neither part of the medical condition nor of our PIP application. I am a pretty robust individual but ended the process in tears.

The question then arises what response UK society through its DWP will make to the findings of the interview?  I can confidently predict that either Paul will be allocated a PIP payment, ie he will get some money, or he will not. That will be it. There will be no response that his condition and needs have been considered, that support has been defined and will be made available and funded. Frankly, I don’t want their money, I want a society which will help me put in place the support my son needs, which is especially important in the event that, as is likely, I precede him.

I am powerless in this situation and process. Like other respondents, I would greatly welcome a strong initiative from our party to address this social disgrace and provide properly for disabled people. Perhaps senior members of our party who know how to make things happen in a way I don’t could take some action. We even have former DWP ministers in the party who could perhaps pick up the phone?

* Geoff Crocker is a professional economist writing on technology at www.philosophyoftechnology.com and contributor to Basic Income Earth Network, www.basicincome.org

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16 Comments

  • Lorenzo Cherin 30th Mar '17 - 2:11pm

    Geoff is so correct and considerate in this issue.

    The whole thing is appalling.

    Those often not qualified to judge such things , making judgements on those often entitled to such benefits.

    We need to restore individual dignity which from a humanitarian as well of course from a Liberal perspective , means personal; autonomy.

    Start from there and the rest is easier than otherwise.

  • @Geoff

    Thank you for updating us on your experiences with PIP, I know that could not have been easy to write.
    I think it is important for people to read though about the devastating impact that these inhumane assessments and changes to legislation can have not just on the claimant, but on family members, Carer’s etc.

    There is a second Independent PIP review released today by the government, typically after the debates have finished in parliament and on the last day of this session.
    https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/604097/pip-assessment-second-independent-review.pdf
    The report is pretty damning on PIP and the DWP, showing up the failures in quality of assessments, it also acknowledges that the DWP and the assessment providers in most cases do not contact claimants healthcare providers for statements / reports on claimants conditions. It acknowledges that it is the “claimants” responsibility to provide supportive evidence but does not make this clear on the forms or in literature.

    It also acknowledges that over 65% of cases that goes to appeal are ruled in the claimants favour.

    The Government spent all this money to move from DLA to PIP allegedly to improve the quality of assessments / awards and in order to save money. What they have done has ended up introducing a new benefit that is worse than the one it replaced and is costing billions of pounds more to the tax payer and causing untold misery to vulnerable claimants and their families. Go figure

  • Gemma Roulston 30th Mar '17 - 8:24pm

    Geoff, this is so true. I found the process very distressing for myself and for my daughter. She has dyspraxia, LD, asthma, MH and speech and language disability. I have osteoarthritis, fibromyalgia and depression. When I was assessed, I had a Spanish/Portugese physiotherapist. She had a former Mental Health nurse – who thought that the speech disability would be something that she would grow out of. How on earth did he come to that conclusion? He has no knowledge of Speech therapy etc. Both of our assessments were about over an hour long. Very tiring and distressing for all involved.
    We allowed the start of PIP. We could have reformed DLA, but no we liked power too much. I hope those at the top of the party are pleased with themselves. We should as a party have a disability policy paper that isn’t over 20 years old. There is so much that needs to be addressed. ATOS et al. PIP, what the actual reality is for disabled people. Let’s not be afraid of the Daily Mail and Express on this issue as we are not on Europe.

  • The basic problem is that PIP was introduced to reduce the benefits bill. This is why it involves humiliating interviews and you can’t just send in medical notes or state the condition on the form. It’s a terrible system and a dreadful way to treat people. Really the decisions should be made by the doctors and health workers involved rather than by DHSS office workers who have been leaned on to fill a quota based on a brief tick box interview conducted by a hired hand. DLA was much better, though also not always fair.

  • I get why a patients own GP’s are reluctant to carry out assessments because it might cause friction with their patient if they did not like the assessment and could effect patient / doctor relationship.
    However, I fail to see why claimants can not be assessed by a different GP surgery, the point being though that because this is still being carried out by the NHS the doctor would have full access to the patient / claimants medical history / records and reports and would be able to come to a fairer more conclusive assessment.

    One thing is for sure though, these private companies should not be poaching paramedics from the NHS to carry out these assessments.

    We go to vast expenses to train our paramedics, we already have a shortage of them in the NHS and to pay for their training only to lose them to likes of ATOS to carry out these assessments is just so wrong on so many levels.

  • George Biscuit Thief 31st Mar '17 - 5:54am

    It’s stuff like this that should have been debated at conference, not rubbish about prostitutes and faith schools. Talk about issues that actually affect people. Then they try to talk about how tough they are on mental health. Britain needs proper social security, like any other European state.

  • Daniel Walker 31st Mar '17 - 9:08am

    @George Biscuit Thief

    I think you’ll find that prostitutes and children are people, George. (Which isn’t to say this isn’t an important issue, you understand)

  • I was awarded the higher rate of pips with mobility in 2015 as I had qualified due to my osteoarthritis which has got much worse not better
    my husband has put a kitchen in the small bedroom as I find stairs very difficult and have had several falls
    I had a paramedic call to reasses me eight months before my pips was due to be renewed he was here for forty minutes I was scored zero points on everything on form he said he saw me drink a cup of tea which he didn’t I had a glass of water
    Arthritis gets worse not better how could I score so many points first assessment and zero on the second add to that pips was stopped immediately I’m devasted .

  • I am 65 years old with multiple conditions that means even my consultant considers complicated. I went through this humiliating and lengthy process last year when I changed over from DLA, a lifelong award, to PIP. The process took 7 months, the stress contributed to a deterioration in my health but I was awarded the highest rate in both components. However the award is only for 3 years and when you consider that they will start the review process at anything up to a year early it is in reality only 2years before it all starts again. On the report from my face to face interview it clearly states at the end that I will still need help at this time. My condition is incurable and at my age is only going to affect me more and more as time passes. What is the point of putting me through the humiliation again and so soon, and what a waste of money this must surely be. Obviously nobody dealing with my application was qualified enough to realise my health will not improve And so it starts all over again next year. I feel the whole process is deliberately long, complicated and demeaning so as to deter people from applying, and the fact that none of my doctors or therapists were contacted during my claim also shows that decisions affecting many lives are being made by under qualified people being paid by the taxpayer through private contractors.

  • Jean.heale.
    I’ve heard about the interviewers flat out lying before. Again this is because the system is designed to reduce the benefits bill not to help people. Really it should be scrapped and face proper legal accountability.

  • @Geoff – As somebody who is a very private person and lives with a degenerative/progressive neuro-muscular condition, I sympathise with how distressing it it is for you and your son.
    I have recently been subjected to the ‘PIP’ interview. My partner was with me, and knows that I am not one for discussing issues that affect me – When you have to lay out the issues of example toileting, it is humiliating – Being asked ‘But do you wet yourself’ ‘Do you need to change your clothes’ makes you feel less of a person.

    There is also the issue that despite DWP guidelines on how the interview is be conducted, from my experience these are A) Not understood by the Medical Assessor or B) Known, but the hope is that the claimant is not aware.

    In my interview, the MA advised that he was a nurse with 30+ years experience, yet when discussing my medication regime actually advised me on what he ‘thought’ was the best way for me to take my medication – This goes against what is outlined in the DWP guidlines – The MA is not there to offer advice or recommendations – The MA advised that in his opinion I should be taking ‘Med B’ in the morning – When I pointed out that ‘Med A’ was my primary, and had to be taken at Morning/Afternoon /Evening, and that ‘Med B’ MUST NOT be taken within a minimum period of at least 2 hours of ‘Med A’ he just carried on tapping away at his laptop – To me this was astonishing! The pharmacy that I use and who know me, even after 8 years ALWAYS reminds me of the ‘2 Hour Rule’.

    I have yet to receive my decision, but I suspect I am going to have to go through the further distress and trauma of a ‘Mandatory Consideration’ and then potentially an appeal and Tribunal hearing – I’m hoping this will not be the case, but given the experiences I have seen and read, I’m not overly optimistic.

    After the hour interview I was left exhausted and with a feeling of humiliation, I felt also upset and to some degree angry, as I could see how my partner had also been affected, who appeared in shock and also upset. This obviously is only my own personal view and experience, but it would appear not an unusual one!

  • Lorenzo Cherin 31st Mar '17 - 1:52pm

    The comments from Dawn and Shaun are indicative of a disgraceful and corrupt system, degenerate in its actual implementation, reliant on individuals devising and delivering things without ability or interests in common with the client or applicant.

    A universal basic income is not necessarily the answer .

    But what we have us a disgraceful non solution.

    Thatcher, let alone Major, is looking like a Liberal in retrospect .

  • I would just respectfully point out that humiliating and illogical medical assessments are not new. It’s nearly 20 years ago that the DWP declared me fit for “all work”. Indeed they offered me a job. But I failed the medical.

    (Incidentally, had I lied and claimed to “drink alcohol before noon” I would have qualified as unfit.)

  • @Jean.heale

    So sorry to hear about your experiences, sadly I have read many examples of where people have said the assessor has told lies. This is an extremely worrying trend indeed.
    You didn’t say if you appealed the decision, I hope that you found the strength and support to do so.

    @Dawn kelly
    Thank you for sharing your story.
    it is ridiculous that a lady of your age with an incurable disease that is only going to worsen over time has been given a time limited award.
    “the fact that none of my doctors or therapists were contacted during my claim”
    I know it is a disgrace, most claimants do not realise that it is their responsibility to gather all the supporting medical evidence for their claim and at their own considerable cost. The DWP are not and do not in majority of cases contact a claimants GP / Specialists for a report, despite asking for their details on the claim form. Today’s independent report into PIP clearly flagged this as an issue, it said the onus was on the claimant to gather the information, however this was not made clear by the DWP in the forms or other literature supplied. This places the claimant at disadvantage especially those who can not find the hundreds of pounds asked by some specialists / consultants to provide a report.

    @Shaun
    Thank you for sharing with us your story, the more people that find the confidence to stand up and speak out, the better.
    Th type of questions you were asked where typical, I have had very personal questions asked of me in the most inhumane and devoid of all emotion way, that has left me feeling ashamed and humiliated.
    The questions you faced on medication was a test of whether you could manage you treatment unaided, if you were able to answer what you took, when and how you take it and how you mustn’t take it, you have shown ability to manage your condition yourself

  • Shaun Young 1st Apr '17 - 2:08pm

    @Matt – I fully understood the criteria regarding the meds – However what I was more concerned with was the fact he was offering me advice – For somebody who perhaps is not fully aware, or who did/does not have somebody to support them, and is given the same advice/recommendation, and takes that advice could potentially place themselves at risk, if they are taking meds that have should not be taken together and could produce a toxic reaction.

    It is the inconsistency of the whole regime, and because the system relies on the ‘opinion’ of the Medical Assessors who regardless of their backgrounds are almost required to have an encyclopedic knowledge of all conditions – this is never going to improve. Even the MA who assessed me although a nurse, did not have an understanding of the morphology of my condition, and actually appeared to call into question some of the observations of my Consultant Neurologist – Even though she had provided Genetic Testing Results and Electro-Conduction Results – I’m pretty sure a Consultants opinion based on ‘factual’ results and thorough understanding within the field of Neurology, trumps an MA who is offering an opinion based on ‘their’ generic experiences. I have no issues with the need to carry out assessments, but they should be undertaken by assessors who have the relevant knowledge associated with conditions IMHO :-/

  • @Shaun Young

    I agree with everything you have said.

    I am thankful to you for coming forward and telling people about your own awful experiences with the DWP / private assessors. It takes a huge amount of courage to speak out.
    People need to hear about what is really going on with these changes to disability benefits and they way people are assessed.

    People are starting to listen, hopefully when the next parliament session starts, the government is going to be dragged over the coals. I know there is another parliamentary debate scheduled. The government is going to have to come up with some answers for that damning Independent report on PIP that the government tried to slip out on the last day of the last session of parliament

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