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.

Sunday, 14 October 2012

Autumn leaves, but not before the sunshine...

So autumn is here, one of my favourite times of year.  What have I been doing?  Pretty much nothing really.

After a month on fluoxetine, I traded for Sertraline, and things are much more evenly-keeled.  I'm starting, very slowly, to overcome the insidious agoraphobia that creeps up when I'm not looking; the mood swings are back under control(ish); and I am starting to look at the next day in my diary.  Don't want to overdo it; next week is far too scary to face.

I've been knitting, of course; and have almost finished a project I started a couple of weeks ago, and which is giving me a big kick because I think it's gorgeous.

I am desperately worried about members of my family that I care for very much.  They are fighting stuff I can't begin to imagine.  Some people liken living with pain to suffering with cancer, expressing the view that the former is worse than the latter, and I can tell you now, it is NOT a legitimate comparison.

I live with pain, it's my daily companion, physical and mental.  I don't know what tomorrow will bring, or this afternoon, or even the next hour.  I get friendly catcalls when I announce I'm off to bed at 7 in the evening - I don't care, it's a good laugh, and the joke's on me.  But I know there will be a tomorrow, a this afternoon, a next hour.  And yes, I know that it will probably be teeth-gritting.  But it's life.  And it's as full of laughter as I can possibly, humanly make it.

Which is why I blog about depression.  Depression is nasty - it removes my deepest, strongest, most vital tool for dealing with pain - my laughter and my singing.  Actually the less said about my singing the better.  But my laughter, and my ability to make others laugh / groan / wince / gasp / blanche means I am alive, I am still me, and it enhances my ability to love and care for those around me.  Depression is the fire blanket over the chip-pan; you don't want to set fire to the kitchen, but you still want those chips!

I'm not coping physically.  I need help.  I'm too ashamed to ask for it, and I'm not able, at the moment, to make the changes that will make asking for it possible.  Why am I broadcasting this to the world and his wife?  Because it helps to see it in black and white.  To acknowledge that I'm human and weak.  And to hope seeing it in black and white helps someone else.

Thursday, 16 August 2012

So it's time to introduce you to another very important person in my life.  So far you've met me (poor you), Big Chief White Hair, and Young Master.  The Queen of Cream presides over all of us.

I have a very, very special friend.  She's 4 days younger than me, and a grandmother (I do like to rub that bit in).  Her name is, let me think...  Goddess Yelena.

Yelena moved away to Downunderland 16 years ago.  We talk once, maybe twice, a year; sometimes not that frequently.  We see each other on the Blue Page, which makes life easier given the time difference; but it's not the same as when we worked in the same office, would go home and then spend 2 hours a night chatting on the phone!

Anyway, the thing about Goddess Yelena is that not only is she very wise, beautiful, and the best of friends anyone could ask for; she's my very very best friend.   I won't say she's everything I'm not; we are similar in many ways.  She just completes me in a platonic, sisterly way.  If I have a problem, she supplies the other half of the jigsaw; the other pair of eyes; the other way of thinking.  We have that kind of relationship where we both understand each other, but also have the ability to think at right-angles to each other too.

We can't always be there for each other when we want to be.  We can't always remember to take the phone with us when we're expecting a phone call that arrives when our head is stuck in the washing machine and we can't hear it ring (oh ok, that's just me!)  It does break our collective heart to know that sometimes the other is in need and we are so far away (and yes, I can speak for both of us on that one). 

I just want Goddess Yelena to know how much she is part of my life, and how much I think of her.

Friday, 10 August 2012

Prozac

I was once accused of being a neurotic, middle-aged woman on Prozac.

I wasn't, at the time.  I am now.

I'm quite nervous about taking these tablets.  Until now I've been able to take charge of my own head, eventually.  But the time has come to accept that I need extra help.  The mirena coil has affected me differently this time, and as I told my GP yesterday, I now have two volumes - calm and psychotic. 

My skewed thinking has taken on a whole new dimension.  I realise that that nasty woman is back inside my head, pecking away with her "maybe you're just turning into an embittered old woman.  Maybe you're just not as nice as you want to be".  I'm gagging her, but not very successfully.

I've had a lot of help and support from other anti-depressant users.  I know to expect the woolly head and spaced-out feelings that I've had from painkillers, for example.  I hope I'll adjust quickly, and I'll get to the bit where I feel better.

It's scary, but it's not failure.  It's just the next phase of being me.

Thursday, 26 July 2012

I walk through life on the hands of thousands
Helping me forward on a mattress of tender whispers.
I have only two hands
But they take their place among the thousands.

Wednesday, 4 July 2012

Philosockiphal

Yes it's been 2 months since my last post, and yes I've been steadily knitting one sock in all that time. That includes completely or partially frogging about a dozen times.  It's amazing how much punishment Opal yarns take - I love them.

I decided to try knitting a toe-up sock for the first time.  The first three attempts were huge.  The next two were tiny.  Then I didn't like the leg length.  Then I couldn't get the frilly edging pattern to work.  Then I decided to do it my way - and at last it worked.  Here's the photo.

It's only the first of the pair to be completed, and I haven't even sewn in the ends yet, so it's only 99.9% finished.  Suddenly this sock symbolises stuff. 

I've been depressed again for a few months now.  Lots of reasons why.  At first I didn't want to believe it - I beat it last year, didn't I, I had Plans and Actions to stop it happening again - but still it came.  I've spent a fair few days in tears for "no" reason (but there's always a reason if I just dig deep enough), and I've sought help again.

This time there is no massive revelation, no eureka moment, just gentle reminders of ideas that have lapsed.  Apparently this is a lapse, not a relapse - or is it the other way around?  Either way, every day there is a fight.  The wrestle with the idea of opening the front door.  The tug of doing nothing versus the cleaning, clearing, clutterbusting.  The comfort in defeat that is solitude.

Sometimes the prefab ideas don't work.  The recipes don't come out right.  The instruction manual doesn't contain the right troubleshooting.  That's when I realise I am finding my own way, and that thought gives me strength.  I'm not always going to knit the perfect sock straight off, I'm going to have to tweak patterns I've read, until I can say with some certainty that so many alterations have been made that I've actually designed my own sock.  Knitting knoweth not plagiarism!

Knitting designs are born of trial and error and imagination and all the patterns that have been created before.  And that's what's happening in my head.  I'm making up a few new rules to tackle a different year's depression based upon the old rules from the old year.  So far there's been lots of unravelling and unwinding and starting all over again.  No matter.  The knit and purl of my depression is pretending - going through the motions, feeling the odd twinge of a glow that tells me this won't be forever.

I'll be unravelling a million knitted objects in my life.  I feel that depression will be a lifelong fight.  Until the socks stand up and start to unravel me, depression won't win.  It won't beat me.

Monday, 7 May 2012

So...

No I haven't started The Bag yet.  I did finish The Hat, but haven't blocked it yet, and it will need blocking if it's going to fit me!  I've decided to do an unmatching set, if the yarn holds out. Flowers and leaves.  One sock has almost beaten me, but not for long.  Pics will follow.  Eventually.

And in other news, Young Master has been off on jolly jaunts this weekend.  He's growing up.  Hopefully he's bringing me back some scheissenfleissen.

Tuesday, 17 April 2012

Hat day 2

The colours here are stronger. Onto a circular needle once 26 sts per "petal" are achieved (52 per needle) and the stitch marker goes to the beginning of the round.

The hat will need to be blocked to achieve its full circumference.

Monday, 16 April 2012

And to cap it all...



Yup still not a bag.

In advance of a visit to a very dear and absolutely lovely friend at the weekend, I decided to raid my stash and found thingummy riches in the sock yarn department. So in the interests of having a go at something else new, I plumped for a lovely Ravelry beret pattern called Wasabi Hat.

The pic above is of an hour's work, and while the pastel colours have washed out a bit, this helps to show the stitch definition and simply lovely floral motifs. I'm hoping to adapt the pattern for matching gloves and socks, but as a spring knit am not too fussed. Incidentally, given the lace pattern, the stitch marker indicates the first needle rather than the beginning of the round. I find this works fine for me.

Hey ho.

In other knews, Kerbaceous Kabbage the Krump (aka Kerbie) has arrived. Here is Kerbie at home, and fully loaded. Big big thanks to Great Chief White Hair for all his efforts in providing a secure home and kerbway for him/her. In fact that sums up a problem: Kerbie definitely is gender-free but also definitely not an it. Hmmm.

Putting the proverbial in it.



Clearly these are not a bag. These are socks. My latest little project thanks to Ravelry - a combination of Socks for Christy and Donyale. SfC are knitted toe-up - a first for me - and Donyale features a 4-row 5-stitch pattern that complements the lovely rainbow randoms of the Regia Bamboo sock yarn. Extremely comfy, and just a tad on the long side - I'll need to make them about 4 rows shorter for a perfect fit next time.

Incidentally the weird cuffs visible in the pic of the pair is simply because my sock forms (aka a cut-up pair of 60p mouse mats) are a little bit too short. The single pic gives a better idea of the finished sock as worn.

Wednesday, 4 April 2012

Too much!!

I know I know, two posts in a week!

I'm determined to inflict every stage of this project on the world at large (well my half dozen or so followers at any rate!)

So the next stage is choosing designs.

This wool struck me as being Kauni's big brother. It's softer than the Kauni, but seems to have a similar colour range, so I've spent an hour or so sifting through my bookmarks to find a few possible charts. I really want this bag to be a work of art.

I've looked at everything from hexagon piecework to entrelac to Scandinavian two-colour charts and so far here's a selection. For anyone who's not heard of Kauni before, I recommend googling "Kauni Damask" for photos of the striking vibrancy possible with these rainbow wools. I don't want to get into copyright bother but cutting and pasting pictures direct.

So anyway, here are a few colour chart possibles: first the damask chart looks like this: