Sunday, 30 December 2012

My ATOS story; MPs and adjudicators and a sorry conclusion

So now to the end of my story.

L, the lovely lady at DWP, actually wept when I rang her to ask what on earth could I do next.  She simply couldn't believe the outcome, and her frustration on my behalf was tangible.  She sent me an appeal form for the matter to go to tribunal; and I contacted my MP.  I sent him reams of emails that had passed between us and DWP over the months; and to give him his due, he acted quickly and went to the head honcho at DWP for an explanation.  I felt at once elated but also just a little bit cheated by the response - there was no acknowledgment of the failings in my case, or explanation that stood up to scrutiny.  I was, however, to have my full award reinstated without the need for future renewals (although that's turned out to be a shortlived relief with the impending doom that is PIP).

So what next?  Without the satisfaction of any kind of worthwhile or meaningful apology (DWP bloke did say sorry, but I didn't believe him), I decided to take the case to the Ombudsman - but to do that I had to undergo the hurdle that was DWP's complaint system.  We wrote to the Adjudicator - only to find that that office is just another extension of DWP, manned by DWP staff.  It took them 18 months to deal with our complaint, during which time they made repeated errors of their own, and even tried to dictate what we could and couldn't complain about!!!  I really am not exaggerating, we even had to use their labels and terms.  They offered me a really paltry sum for our phone calls, and denied that there was any kind of case to answer.  And I was simply too drained, after all the lies, and hurt, and indignity, to take it any further.  I never even checked my bank account to see if they did, in fact, make the payment.

And to this day I feel like I let everyone down by just giving up.  But I no longer had any fight left.  Maybe someone will read this and think "ah, you got the money you wanted, that's all you did it for" - but they'd be very, very wrong.

What will the future hold?  I'm pretty certain that PIP will remove such independence as I now have.  My conditions are already listed to be constantly reviewed, as they apparently aren't as chronic, degenerative or debilitating as the rest of the world believes.  I haven't got the power for that kind of fight ever again.  I doubt I'll ever make another claim again.

I may have got the money in the long run, but deep down, I know that they've won.

My ATOS story - the appeal:. ATOS and the GMC

So what about the part played in this by ATOS?  Again this is a bit complicated - some of the information I learned about the ATOS procedures and ethics only came to light because I decided to take my case to the General Medical Council (GMC).

To cut a long story short (hehehe even I have to chuckle at that little piece of irony!) the report submitted to DWP by Dr X bore little resemblance to the "examination" which had taken place (if you remember, asking me to stand up for 1 minute, and a gentle prod of my ankles and wrists).  Don't get me wrong - this doctor had done his very best not to inflict damage or pain on me, something I am actually grateful for.  But by not seeing me try to walk, or mount my staircase, or even permitting me to answer some of his questions fully, he also deprived me of the opportunity to make my case properly.  And I'm afraid to say that his report was inaccurate, incomplete, and contained some fallacies.  OK, in my opinion he lied.

One of my ankles is a bit puffy - has been since I was a teenager and kept turning it over at school. Accordingly, the report claimed that I walk with a limp on that ankle.  Remember he didn't actually see me walk - the limp was invented.  He claimed that I had no problem with our narrow and steep staircase - again without seeing me attempt it.  And while my mobility scooter attracted a lot of attention, the wheelchair and zimmer frame which he twice had to walk past on his way through the hall, received no comment at all.

Other omissions were the amount of nagging Great Chief White Hair has to do to persuade me that it's time to take my medication; that he has to open jars and pots and containers for me and count them out; that he prepares my lunch and a hot flask before he goes to work in the morning, and prepares the evening meals for the family.  I was awarded the tiny bit of care component only because he did report my difficulty with holding and using a knife (one of the only things we told him that actually got written down).

The most telling inaccuracy? Assumption?  Fabrication? also related to my ability to walk.  Here I need to deviate a little.  As part of the GMC disciplinary process, Dr X was given the opportunity to defend himself in writing.  Apparently he "knew" I could walk more than 200 metres with "occasional" pauses and rests, because of ATOS/DWP criteria - in short, I was not a paraplegic, and I didn't have heart or chest problems.  Or, in other words, "them's the orders, guv" (my paraphrasing).

Both ATOS and GMC upheld my complaint - although the latter decision was eventually overturned.  The GMC case even earned a very brief line in an article about hard-done-by ATOS doctors.  While the ATOS decision was made some time before the GMC disciplinary proceedings, as I've already explained, it did nothing to help my appeal, and in fact the very next post that brought me the ATOS decision delivered the reconsideration - another aspect we found highly suspect.  So what of the GMC case?

This happened some months after the financial side of things had been rectified, so the appeal hearing (and less importantly the newspaper article) were both unfair, in my opinion, to proclaim that the complaint would never have been made (by me) if I hadn't been stripped of my DLA.  That's such an enormous deflection that it takes my breath away.  The original sanctions laid against Dr X by the GMC when they found for me were overturned quite literally on a medi-legal technicality.  He was disciplined under the section of their rulebook which deals with the doctor-patient relationship which outlines the duty of care that should exist.
The appeal lawyers successfully argued, quite simply, that in the situation we were in, when a doctor is employed by ATOS to conduct a medical examination of a patient, there is no doctor-patient relationship, nor any duty of care towards the claimant by the doctor conducting the examination.

My ATOS story - the appeal - DWP

Here's where it starts to get complicated.  I have to split this into two or possibly three different parts, although these strands were all happening at the same time.  So this strand will concentrate on the DWP.

After opening and reading the award letter, I went to pieces.  Using the phone is horrible for various reasons - physically holding it, trying to have a conversation, especially with strangers who can't be expected to fill in gaps in speech for me, or understand when I'm silent that I'm not being rude, or that when I'm crying, I'm actually not shouting (a mistake that has been made more than once).  Suffice to say that my original call requesting information and a copy of the medical report was completely ignored.  After waiting a month, I was told to wait another fortnight.  After that too passed without any sign of my paperwork, I became so emotionally unstable that K had to take over.

And this is the point at which I made contact with L, who rapidly became our DWP guardian angel.  L arranged for us to collect a copy of the medical reports submitted by my consultant and by the ATOS doctor, Dr X, which she had faxed to my local jobcentre plus.

My own consultant had done nothing to fill in the forms other than sign them and return them blank.  This, I surmise, was the reason for the assessment.  Had the DWP contacted the hospital to find out why?  Of course not.  But at least here was something I could do for myself.   I contacted the hospital, had an appointment with the rheumatology nurse specialist most familiar with me, and she wrote a full and detailed letter outlining each and every one of my medical conditions, the impact of each on my life, and the fact that these were all debilitating, chronic and degenerative conditions.  They're not going to get better, only worse, and I have to live life as best I can with them.  This letter was dispatched direct to DWP, copied to me, within a month of the blank form.

Dr X's report was a whole different ball game, to be dealt with in the next chapter.  I made a formal complaint about it, which resulted in it being rubbished and overturned by a senior ATOS manager.   Despite promises that the formal complaint would not hold up the reconsideration, the only time that L let me down in the months to come (and it wasn't her fault), the reconsideration, which should have taken 11 weeks, in fact took nearly twice that.  Armed with evidence that the ATOS report was completely discredited, and another letter backing up every one of my claims from medical staff who actually knew my case history, 3 months after my appeal, I received the reconsideration decision.  The same decision maker had, surprise surprise, upheld her own original decision despite all the evidence to the contrary.  And her evidence was questionably an unsigned form offering an "expert" medical opinion from an unnamed individual who had not, nor ever would, so much as send me an email; and of which there remains no trace on DWP's own computer system.    I leave you to draw your own conclusions.

My ATOS story - the examination

Because my conditions can cause daily variations in state of - not health, I'm not ill - ability?  Energy?  Mobility? - all of these and more, I was made to renew my claim annually, filling in a form that was many, many pages long, often requiring the same information to be repeated in different ways throughout.  This takes literally weeks.  All the problems of daily life that I shut my eyes and mind to in order to function through the day, have to be raked up and set down on the online form.  It can be saved, but take too long to complete the form, and the .gov website dumps it and you have to start again from the beginning.  Not just the problems - the indignities and the dependencies, the reliance on other people to carry out functions on one's behalf that were such a milestone when accomplished as a toddler.  Take your deepest fears, your harshest shame, and set them down for scrutiny by anonymous, unbelieving, and faceless civil servants, and hope and pray that your case worker and decision maker actually might care.

So it was when I submitted my renewal claim.  My first claim had been straightforward, and I had been awarded full care and mobility allowances.  The second awarded full care and medium mobility, again without assessment.  The second renewal was to be a whole new boardgame. I was to be assessed at home by a doctor who would conduct a medical exam on behalf of ATOS.  That's when the fun and the lies began.

The doctor arrived with a bare 2 minutes of the allotted appointment hour to spare.  By this time I was literally shaking with anxiety and apprehension of what was to come.  But he seemed sympathetic, was gentle, and seemed to be making sufficient notes when Great Chief White Hair and I supplied answers to his questions.  He was so full of empathy, in fact, that on two occasions he told me to stop trying to talk to him as I was struggling so much to form sentences.  From that point he would only ask yes or no questions.

The rest of the "examination" followed along similar lines.  I was asked to stand up for one minute, which I did with the help of my rise/recline chair and two walking sticks.  Brief examinations were made of my wrists and ankles.  Questions were asked, and full answers given, regardless of instructions not to speak, by both GCWH and myself.  20 minutes after arriving, including the time spent writing the report in the house and in car, the doctor drove off.  He hadn't seen me take a single step, or even try to walk unaided.  As he drove off, I collapsed in a heap, thankful that the ordeal was over, and believing that until the letter arrived confirming my new award, I could go back to living life without constant focus on the things I couldn't do, positive and full of fight.

Within a month. I received my award letter.  I had lost all my mobility award, and all but the most basic level of care component.

My ATOS story - prologue

It's taken me years to feel sufficiently removed from these events to be able to blog about them.  This is a double-edged sword - time has softened the impact, but it's also removed some of the memories - and I'm not yet strong enough to reopen my several-inches-thick file to revisit the pain.

I didn't claim Disability Living Allowance when I first became disabled.  It was only after I had a severe outbreak of both spondylarthropathy and psoriatic arthritis that left me hospitalised for several weeks in Nov and Dec 2006 that it became apparent these were going to be life-changing, in a way that fibromyalgia hadn't been.  To explain these diseases briefly, fibromyalgia is also known as chronic pain syndrome - it affects the muscles, and apart from constant, inexplicable and incurable pain, fatigue akin to that of M E sufferers; severe sleep deprivation and concentration, cognitive and memory problems caused by both the lack of sleep plus the effects of all the various pain and other medications (usually anti-depressants used as muscle relaxants).

Spondyloarthropathy is somewhere between ankylosing spondylitis and rheumatoid arthritis.  It is an inflammatory arthritis that attacks the spine and every joint in the body. Psoriatic arthritis is another inflammatory arthritis that usually accompanies psoriasis.  I have been extremely lucky in that the arthritis presented before the skin disorder - this means that the medication I take has kept the latter at bay, and I don't have psoriasis to contend with as well.  PA attacks the joints in the hands and feet.  6 years on, I now also have the early stages of osteoarthritis - the ordinary wear and tear of joints that comes with age.

So basically my muscles and my joints hate me.  I take very strong meds that suppress my autoimmune system, wear me out when administered, and make me nauseous and my hair fall out.  But they keep me walking.

Life is a list of priorities.  Shower OR go out - not both on the same day.  Iron OR cook.  Study OR hold a conversation.  Recommended reading is the website called "But you don't look sick" - the spoon theory describes my life much better than I can.  But in brief - I have a limited amount of energy.  Getting out of bed spends some of my precious daily store.  Getting dressed a bit more.  Washing a bit more... So it goes on.  Exercise and healthy eating can increase my energy stash - but it can also diminish for absolutely no reason.

This is a sketchy outline of my life when I renewed my application for DLA 2 - or was it 3? years ago.