An end to my PIP Saga

[Leviset]

I posted months ago about my ‘PIP’ debacle with the DWP. I’m 70 now and missed the April cutoff date in 2014 for just staying on my DLA by a few months, ending up with the torture of repeated PIP Assessments. This almost resulted in death - dreading my last but one home assessment I took too much Oramorph & Codeine as I was so stressed I’d forgotten if and when I’d taken my medication. I ended up in an induced coma for 4 days, my wife and family had been told I probably wouldn’t make it through the first night on the HDU and even if I did I would be brain damaged.

I survived - I know of many RA Patients who have died, labelled as suicide, who really died of this Privatised Out-sourced ‘we’ll pay you a bonus for every person you get off benefits’ in humane way. We (RA challenged) and other disabled people are assumed to be ‘Scroungers, Shirkers, Playing the System etc.’ and it’s left to us to prove otherwise. I’m ashamed that I became so psychologically ‘weak’ that I ended up using NHS time and putting my family through hell and that I let ATOS & The Government who employ them bully me into a corner. It was my Wife who faced them down for what this system has become - a cheap sure way to get a few million pounds off the benefits bill, and a real vote catcher with the public who believe we are malingering.

A quick Online search will reveal that ≈ 75% of ATOS assessments, where disabled patients have lost all or some of their PIP, get it all back at appeal. So we’re paying ATOS for each of the first PIP assessment (don’t forget I mentioned they get a bonus for each person removed from benefits) and then we pay ATOS again to do the appeal process. So we’re rewarding a Private Company for getting it wrong 75% of the time plus they don’t have to give the first tranche of bonuses back! A close inspection of the 3 times I’ve been either rejected or kept my PIP reveals absolutely no resemblance to the scoring I handed in at my assessments and agreed with the assessor (ATOS will tell you their assessors are fully medically trained - I’ve had a first year training Nurse needing extra part time income, a ‘first aider’ works employee trained to stick on plasters and someone who hadn’t worked as a Nurse for over 25 years.

I believe that after the assessors send their reports to the DWP there’s an army of non-medical clerks, following some sort of tick list, that do the final scoring - if I don’t think this then ATOS are so inept they really do just get it wrong 75% of the time.

The Good News (I’d hoped for all of us) but not really!

Amber Rudd, citing her own 80 year old blind Father, stated in Parliament early this year that it was very wrong to keep subjecting the +65s who are already on DLA/PIP, with long term conditions (like our’s), to repeat annual assessments. She stated this change was to be implemented ‘late spring’. I had many discussions with the DWP to actually confirm an actual date. My reassessment took place in the middle of this limbo period. I’ve finally received a DWP letter keeping me at the highest level of Mobility and Care rates (that I’ve been on for a few years, but have lost or been turned down in the past only to get back on appeal) AND that I will be next required to have a ‘Light Touch’ assessment in 2029. The relief of getting ATOS off my case is huge, my wife says I’ve shed 10 years off my face overnight. There is a BUT though from Rudd’s original statement - this new ‘Light Touch’ (what does that even mean, how would you use it in a sentence?) ONLY applies to NEW claimants over 65. Those (like me and Rudd’s Father) that missed the +65 2014 cut-off and who are already claiming PIP will have to have one more full (‘Heavy Touch?’) Assessment - shame on her for back pedalling and using her own Father’s distressful position.

I could easily wash my hands of this process having had my successful final assessment. I want to continue to help anyone on this website, NRAS or disabled to continue to highlight this decision. I can’t go on Marches but as I bluntly told my last assessor at my home following some ridiculous question “I do not have RA of the brain”! I’ve years of IT experience (I had to retire early in 2004 after getting RA in 1996 following a left ankle fusion and a right ankle replacement (which has just collapsed, shelf life is 10-15 years). When I retired in 2004 (aged 55) I was on £70k pa + £12k annual bonus + company car, to live on £12k a year pension. Initially I refused to even consider asking for Benefits or any help, until a disastrous holiday in Cornwall in 2009 where I found I could hardly walk anywhere, stupidly using my pension lump sump to make up our income. My wife (and that holiday) convinced me that I needed to apply for a Blue Badge. I know deep down I’m not a ‘Benefits Scrounger’ and I don’t think anyone disabled is, I was just stupidly too proud to accept benefits until the RA forced me to apply for something I should have had already.

The irony is that the cost to taxpayers of paying private firms like ATOS (they’ve tried rebranding online to ‘Independent Assessment Services‘ with formerly known as ATOS in tiny print at the bottom of their Webpage) to do both assessments and appeals far exceeds the cost when it was still run by the DWP, plus this does not include the cost of numerous IDS millions for failed software solutions and their implementation. The Government could have done NOTHING and saved a considerable amount of money (in the 100s of Millions) - I’ll let you decide what their real motives were?

You might wonder how I’m so knowledgeable in this area? Necessity, I wasn’t well enough to face the appeals, tribunals other than to attend. We have an old friend, a retired GP, who sat on the Appeal Tribunals and had other retired medical friends also involved in the initial assessments and the actual setup. She was paid £350 a day to be part of a 5 panel Tribunal Panel (the other 4 got £350 a day as well) at a total panel cost of £1,750 a day) to hear just 4-5 appeals. When she started to exceed the 75% Appeal success rate they got rid of her. From her other retired friends she heard that for initial assessments by ATOS or CAPITA the some or all of the following obstacle tactics were put in place. (1) Insisting that you went to their offices for the assessment up to and including ATOS paying for a Taxi to take you there - you had to jump through hoops (probably one of the things you can do on their tick sheets!) to get a home visit (Consultant & GP letters minimum requirements). (2) If you are driven to their assessment centre they give you (a) a parking space as far from the building as possible - they monitor with cameras you walking and getting out of the car (b) make the lift out of order (unless you’re in a wheelchair) forcing you to use the stairwell where you are observed by more cameras (c) their desk will be as far away as possible from the door you come in so they again observe your mobility.

I want to help anyone who is still having to go through this appalling process - just respond with your experience, I’m not letting go of trying to get the full changes that were initially promised by Amber Rudd implemented.

On a final lighter touch note - when my 2029 ‘light touch’ review is due, and I’ve probably died, I’ve asked my wife to insist on a home visit. When they arrive I’ve asked her to put my Urn complete with ashes on the table in front of them so they can still interview me. I’d hate to see ATOS lose out on charging the Government for a Home Visit just because I’m dead!

Dennis

[Hidden]

Dennis you are marvellous . I’m just about to start my pip rejection fight you have inspired me. The urns ⚱️ a nice touch 😂😂😂

[mccaffs2014]

Love this post😂😂😂😂

[Biofreak]

Leviset I admire your courage. This post is absolutely fantastic. You have described so articulately how we all feel about this stupid. PIPS system. You have also highlighted how these people operate. Your article is spot on and I wish you could publish it more widely as it would be a real eye opener for those people who have not had to endure the Pips debacle. Thankyou, you've made my day.

[charisma]

That truly is a horrible saga, Dennis.

My own battle lasted 3.5 years. Two Appeals, for ESA even though PIP granted. Last Appeal was finally done months after I finally received my long overdue State Pension (another way they saved billions, stolen from Nat Ins fund and never replaced).

It is a huge relief to have a break at least till PIP reassessment is due late 2021.

You have in fact been courageous although we are made to feel so diminished that we think we’re useless and pitiable in face of ‘big Gov’.

I like the urn comment too!

[Mmrr]

Fantastic, realistic overview of the DWP.

[Kerensa21]

Thank you so much for this post that so many of us can relate to. DWP are a national disgrace inmho x

[Suereeves]

Excellent informative post... well done and thank you.

[AgedCrone]

Like your style Dennis!Why don’t you copy your letter to the Daily Mail?

AC

[Leviset in reply to AgedCrone]

I’ve already sent it ‘warts and all’ to my MP.

In my post I forgot to tell you about the way my friend Richard has been treated. He’s had throat cancer and after treatment can barely talk, he can’t swallow as the Chemo destroyed his Saliva Glands. He can’t swallow food or drink and has to be nourished via a Feed Peg. Once he’d had his treatment and they got the Cancer in remission, the DWP forced him to do voluntary work in Oxfam on the threat of losing all his benefits. He’s just 5’5” and weighs 6 stone - on his first day at Oxfam he collapsed half way through the day and was taken to A&E.

A few months later he was taken back to Hospital with double pneumonia - he was in more than 28 days, then discharged but then rushed back 4 days later.

The DWP are now saying he owes them some of the benefits he got whilst still in Hospital, and have also asked him to go for another PIP Assessment! Because his SATS are so low (57%) he is continuously having to be attached Oxygen Machine. This means he cannot get out and is still seriously ill, yet the DWP believe he is capable of going back to work! In the background I’m helping him deal with the DWP Waffen SS - the process is destroying him, both physically and mentally.

[Riddlemethis]

Brilliant post Dennis 👍🏻 and very true , DWP now days is a greedy and corrupt system! And let’s not forget discriminatory x

[Black2]

Dennis, I have just asked for the Pip form to be sent out to me and tbh, I am dreading it and having second thoughts about the scrutiny I’ll have to face like so many of you guys on this forum.

My condition is a recent diagnosis but I find that the questions on the practice form are of some what relevance. What I’m confused about is, if the we generate enough points on the form, why the extra, intrusive questioning at the DWP offices? Should they not tale into consideration that not all days are the same? I am going to think deeply before sending that form out...

[Georgiab123]

Great Dennis your such a trooper I’m going though mandatory after nurse said I was doing ok, my daughter was discussed so onwards and upwards

[Recorder500L]

Leviset, your item is so true and correct. Being on DLA from about 1990 I also had to go through PIP which took from December 2017 to an appeal in February 2019 when PIP was allowed. My appeal was in early February and two weeks after that appeal the DWP telephoned me to say that they had re-considered my application and PIP was allowed before I go to appeal. But I had already attended an appeal and had a letter from the tribunal to confirm PIP was allowed. A truly complete waist of my time and government money. In the end I forwarded the DWP my letter from the tribunal!!! The DWP are not competent and the Assessors do not have a clue what RD is and the effect it has on us both physically and mentally.

[Gnarli]

Spot on. A beautifully written statement of exactly what the satanic DWP and it's henchmen at ATOS does to people needing and deserving of financial help when trying to live with our lousy rotten disease. We are not alone either. All those poor souls with chronic conditions, life-limiting disease and terminal illness are also made to go through all the obstacles placed in their way. For what? We are hardly talking about vast sums, just a pitiful amount that can make the difference between affording a little help or an easier way of life. Please, please share your thoughts with the media. Most people have no idea how the chronically ill are treated.

[Paisley58]

What a God send!!!!!! Thank you a million times over as I am currently facing this process and it has already reduced me to sleepless nights and anxiety. Your courage has been a total inspiration.

[messylou]

I had my pip assessment yesterday to say I was stressed before going is an understatement, felt like I was going to be sick. Assessment seemed to go okay but not expecting to get it. If I don’t I’m definitely going to appeal

[dembonesDAMNBONES]

I feel somewhat guilty, witnessing the trials and tribulations of those, like you, that have gone before me, knowing my own journey in claiming PIP has been trouble free, thus far, as I have less than a fortnight to await their final decision.

I wasn't required to attend any form of assessment, although I had volunteered to do so with the proviso they provide taxis to and from their chosen venue.

I did, however, bombard them with minutiae, sometimes running to as much four double-sided pages of notes, paperclipped to each section, detailing my conditions, how they affect me on an hour to hour, day to day basis, past, present and probable future outcomes, how the meds affect me, interact with my conditions, mirror my conditions in their side effects, interact with each other, how this has affected everyday tasks and relationships around me and so forth.

I openly pointed out that many aides would alleviate my difficulties and gave examples of how I would employ said aides to make life more bearable, less miserable and stressful and quoted sources that included Argos, believe it or not, along with prices, so they would see I had no intention of frittering any award given.

This might possibly explain why they never asked to assess me or maybe I'm benefitting from the efforts put in by others, those on this particular platform among them, allowing me to stand on the shoulders of giants.

I've had experience of Atos minions in the past, having been assessed by a young woman barely three months out of nursing college, who surmised I "was at it" in her eyes and my breathing and knee problems were all in my mind, yet was diagnosed with emphysema (MRCP breathlessness scale grade 4) and sufferring from an anterior cruciate ligament rupture less than three weeks later, in my first and failed attempt to claim Incapacity Benefit, back in 2003.

I learnt a valuable lesson in meeting her.

They are NOT our friends, their sole purpose being to find any and all excuses to dismiss our claims!

I was made familiar with her details by my GP, who, himself, served on a similar panel, so can attest to tbe veracity of your comments.

Sadly, too many first time claimants are unaware of what they face and naively assumed a fair play policy is in place.

Those of us more experienced, wiser...well, we get lumped together with the shirkers, the con artists the 'congenital claimants', as I like to call them.

Are we 'working' the system, like them?

If we were we'd have fewer problems, knowing the ins and outs, willing to be paid for doing nothing and lacking in morals.

As I said at the onset of my comment, I do feel somewhat guilty, but only towards those in the same boat.

An excellent post, thank you!