The dreaded DWP phonecall - but all is calm, all is bright (for now!)

It seems a crazy and contradictory situation to be thankful for being told you are "unfit for work". Does that make someone a scrounger or a conscientious realist? I hope you can understand my gratitude that for now, while I am too ill to leave bed or house some days, this is the best outcome for me for the time being.

An older gentleman from the DWP rang me this morning at 9.48am. I thought he was about to tell me I was being called in for a Work Capability Assessment (the much-criticised and humiliating DWP medical) carried out by ATOS.

On the contrary, he was very gentle and full of reassurance. Nothing to worry about, it was a "courtesy call" to tell me the outcome of my filling in the ESA50 last month. Because this is just a couple of days before the post shuts down over Christmas, he wanted me to know the outcome, just in case the official letter doesn't reach me in the next few days. He hopes it will come tomorrow, but can't be sure with the Christmas rush.

He explained that my migration from Invalidity Benefit (IB) to the new equivalent Employment and Support Allowance (ESA) has been successful. He also stated that I should not be contacted again for WCA for 18 months. The change over should happen about January 17th, and the rate will remain the same. I asked whether this meant Support Group (SG) or Work Related Activity Group (WRAG) and he said the latter, which is right, and what I had hoped.

This usually entails 6 Work Focused Interviews (WFI) with a personal adviser. These cover matters like dealing with your illness, acquiring skills, voluntary work etc that may help prepare for a future return to work. Basically, tackling any barriers that need to be overcome in order to return to employment. The sort of things always uppermost in my plans and the focus of my efforts even on my very worst days. (Also a more structured equivalent of the work related interviews I had in 2008 with a personal adviser at the local JCP in the weeks after my original claim once SSP had run out).

I will need to be careful to try and be well enough to attend these WFIs when called, as this is part of the contract, even though at the moment (until and if the hotly contested 1-year time limit on contributions-based ESA comes in through the Welfare Reform Bill in April 2012) there is no sanction if you cannot find a job by the end of the 6 WFIs. That is tomorrow's worry, even if it remains today's fight on behalf of all those who have not been fortunate enough to have been placed in the correct group. Please don't think this post is smug or triumphalist. I feel for everyone who has fallen foul of the deeply flawed system through no fault of their own.

Figures I have seen claim that, of those who apply for ESA:
6% - Support Group
16% - Work Related Activity Group
 36% -claim withdrawn
3% -  claims in progress
39% - "fit for work"

Sorry if these aren't the latest statistics. I've seen various figures quoted and am now so brain-fogged, I can't sift them for the most recent! This info is taken from here

Point I'm trying to make is I feel very fortunate I have been put in the WRAG, at least, just from medical information without the full ATOS medical. Perhaps they looked back at the one I had in 2008 and saw from my records that my illnesses (Type 1 diabetes, no hypo symptoms & M.E.) have not improved, and have in some ways deteriorated.

I would be interested to see the ESA85 medical report from which such a decision was taken, but won't do this with any intention to appeal. The support group is limited to very specific cases, and if the time comes when I fit those criteria, it will no doubt be apparent to those putting me through the various work-related hoops!

More determined than ever to keep trying to raise awareness and fight for the many people in dire need who have been cut adrift. When I was fit to work in years past, I always tried to be compassionate to those who were hardest hit in society. I won't be stopping now. Though at the moment, I must leave the blazing ferocity of the laptop screen and rest in a darkened room! Certain nightmares have been put on hold, for now. If I was any more thankful and grateful, my heart might well explode!

MRC announces ME/CFS research projects worth £1.6m

M.E. Associations breaks the news embargoed until today

This sounds like great news, if it is funding for biomedical research.

I'm not really sure what to think, yet. Any ideas on the people behind the various projects?

There doesn't seem to be an immediate drive to separate Myalgic Encephalomyelitis and its causes from "Chronic Fatigue Syndrome" with its flabby umbrella of symptoms muddying the waters. M.E./CFS is still referred to as "the illness". Frustratingly, CFS is referred to first, i.e. CFS/ME many times in the press release. Is this going to be more smoke and mirrors?

I sincerely pray it won't just be more money down the drain, like the PACE trials.

Much to be cautiously hopeful about for 2012.

Shuttlecocks and Shattering Shocks

BBC News: Is the new disabled work benefit working?

I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.

An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.

Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?

I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".

Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.

Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.

A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.

I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?

No doubt I need to shut up, rest and listen to the programme with an open mind, if  possible, even if with a pretty foggy brain!

I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more

The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.

If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.

I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.

Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others.  That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.

You don't understand M.E. - on The Wright Stuff

Thus runs the blurb for a slot on Matthew Wright's "The Wright Stuff" this morning. It's about the latest study on M.E. and school absenteeism:

'Part 5: You Don’t Understand M.E.!
Then: You don’t understand M.E! A new study suggests one in 100 school kids are battling chronic fatigue syndrome, a major reason for absence. What’s more most are undiagnosed which is perhaps not surprising as the symptoms include extreme tiredness, lapses in concentration and mood swings. It’s clear a lot of you want to talk about ME and the way the rest of us react to it, so that’s what we’ll do.'

Sorry this has adverts. Sorry it needs scrolling through till you get to the M.E.bit. For once, IT WILL BE WORTH IT! (It's after the 4th ad-break from about the 52nd minute onwards).

I was frankly sceptical before I managed to watch it on Channel 5 catch-up. We've had our bellyful of tomfoolery, after all, haven't we, with yesterday's offerings from the Food Hospital?
I only noticed it when it was mentioned on an M.E. chat group.

So I waited till I'd recovered from a lovely but exhausting Christmas visit from friends who really DO understand M.E. Then I tuned in, all but peeping between my fingers from behind the settee. Well, lying on the settee, anyway.


IF YOU WATCH NOTHING ELSE THIS CHRISTMAS, PLEASE WATCH THIS! IT'S THE MAINSTREAM M.E. COVERAGE YOU HAVE BEEN WAITING FOR ALL YOUR LIFE!
You Don't Understand M.E. on "The Wright Stuff" Channel 5 15th Dec 2011


Matthew argued it was "still the most misunderstood" illness in a build-up link earlier in the show, so I took that as hopeful! By the end I was almost weeping with thankfulness and joy!

Snippets include: Matthew Wright saying M.E. has been "given horrible nicknames in the past". He made the effort to pronounce myalgic encephalomyelitis correctly and list many of the symptoms over and beyond fatigue.

There was sympathetic balanced comment on the "confusion" over the disease in the popular imagination. Virus, glandular fever, genetically inherited, cycle of good and bad times, crippling - you'll hear all these words spoken with true feeling! A miracle in itself!

Esther Rantzen and Emily were shown in a photo (from the Mail Online site - but don't despair!). Guest Anne Diamond only said how she considered Esther a tuned-in mum, so she took seriously that this was a real crippling disease.

It was questioned, considering all that's known about M.E., whether it was feasible, as this latest study claims, that early diagnosed teens can get well from this in 6 weeks.

So refreshing to hear the tone of the discussion and helpful content being broadcast to the nation. Excuse me if my hasty notes are a bit sparse. I know you'll want to listen for yourself, when well enough, anyway!

 Why not listen to it as an early Christmas presie to yourself? It'll get you in the mood to celebrate even if you can't raise your head off the pillow!

Anne Diamond spoke from a parent's point of view. The need to know when something is just teenage malaise, and when it is the serious neurological disease M.E. I couldn't get used to all the worried, shocked expressions on the faces of the panel and the audience alike as they heard the truth, many of them for the first time!

Anne said there was evidence (evidence!!! wheeeeee!) that there clearly is something there. She compared it to her personal experience and campaign for recognition of Cot Death. Cot Death used to be pooh-poohed too, but is now recognised and taken very seriously.

Another guest, Steve Furst was asked if it might be psychosomatic, but countered at once that understanding is in many ways embryonic, so that's not something people can assume at all. Genius!

It's all about education, I believe one of the panel said. Oh yes, it is! Amazingly, this programme has been the best thing I have EVER seen, for educating the wider public and dismantling the rubbish that's the usual fare we're served about M.E. in the media, in doctor's surgeries and elsewhere.

It was said, from the study, the implication is that it is easier to treat if caught early. Later diagnosis means the disease can have had a hold, doing untold damage for many years.

Then they took three callers on the phones. All three wonderful callers made the time left really count, and none of us will be able to thank them enough. Not a word was wasted.

Jo (32) from Dorset had been diagnosed at 15 when doing her GCSEs. She told of being bedbound for a year and needing to use a wheelchair at times, her mum having to carry her up the stairs. You could see the guests wince at the revelation of such real suffering. Jo explained articulately that although much improved, she didn't consider herself cured even now, and had an "awful immune system". They concluded that if it's M.E. then, it's unlikely it could be cured in just 6 weeks! It was acknowledged that depression, suicidal thoughts, mental anguish only follow from the unremitting severe suffering, and are not a cause of the disease. Jo had improved after having an op on her ovaries, but nobody knew if this was connected. Just like a friend of mine who is in remission from severe M.E. after cancer treatment. One day we will know if these other treatments are affecting the body systems attacked in M.E.!

Jo said she had lost most of her friends, who grow tired with waiting about for someone who can rarely join in.

Duncan from the Orkney Islands was the second caller. His wife is ill with M.E.He explained how short term memory loss is one of the long term side effects she suffers. This makes it impossibly difficult to hold converstions on the phone. How familiar does this sound? How refreshing to hear the truth spoken to help everyone out there to begin to understand. Comments came from the panel like "Shattering!" "Terrifying!" "The lack of help!" and "To be treated as if there's nothing wrong with you!" The message was certainly hitting home at last, with not a nay-sayer in sight!


Will was the third and final caller and also spoke so well. Matthew Wright was genuinely sorry, wishing they had more time for the subject. The studio phones were apparently ringing off the hook. He ended the segment, regretfully, by saying he couldn't think of a phone-in so disquieting. He finally promised, "We will do it again!"

I promise this one will restore your faith in at least a section of the media. I hope the awareness it has begun to raise will be the biggest winter snowball ever. I hope, like me, it brings you hope and joy this season! XXX

Is it just M.E.? Or am I sick and tired of being a bit peckish?

Food Hospital on Channel 4 last night caused such a shock wave of disbelief and anger through the online community of Tweeps with M.E. It's a wonder it wasn't top trending! Ulcerative colitis only got in the trending list yesterday, of course, because the news had broken that celebrity UC sufferer Darren Fletcher, Manchester United footballer, announced the disease would force him to take a long break from the game. M.E. hasn't made such headlines since the last of the umpteen times Emily Rantzen claimed to be "cured" by the Lightning Process before relapsing again!

Food Hospital's episode including "Chronic Fatigue Syndrome" came on the same day as BBC Breakfast revealed 1 in 100 secondary schoolchildren were "sick with M.E." This, of course, after being "diagnosed" in haste with some then "fully recovered" after six months. No Canadian Criteria used, naturally, where a whole range of diagnostic symptoms that include much more than mere "tiredness" have to last for at least six months anyway!

Viewers to the Today (link on yesterday's blogpost) programme were fed the old lie that "M.E." (the auto-immune, neurological, severe and chronic endocrine disease) was identical to the woolly umbrella term "CFS" (a collection of symptoms that can apply to any number of different ailments). All the old myths and dangerous half truths.

Then comes "Food Hospital" with its patronising, simplistic smorgasbord of pseudo-science. People wonder why PWME (People with M.E.) despair, faced with this relentless tide of misinformation. We all needed to take the phones off the hook last night to avoid the calls of well-meaning "friends" seduced by this plausible tosh, telling us they'd just seen a mainstream programme that showed a "cure" for our oh-so-annoyingly persistent multi-systemic physical disease!

The cure? Simple! The girl (Steph) who had been feeling less than well for some 13 years when she was a student, quite evidently had Chronic Fatigue Syndrome. NOT M.E., though no doubt one of the 52% of GPs "confident" in diagnosing M.E., or the 48% who still can't be bothered to learn about it, had told her she had M.E. In no way is this that poor lass's fault. I'm sure we all wish her well and health to enjoy the rest of her life.

The food experts, while peddling all the usual lies that M.E. could still be psychological in nature rather than physical, took a rough survey of Steph's perceived symptoms. Turns out she wasn't eating regularly. Most of her vague headache symptoms, aches and tiredness were down to blood sugar issues and dodgy eating habits.

Hey presto! The prescription?

1.Nibble a bit of dark chocolate (serotonin levels, blah blah blah, nothing new there) which she admitted on camera actually had no effect whatsoever.

2. Regular healthy eating. Which most of us, not least those of us with co-morbid conditions like Type 1 Diabetes, have followed with absolutely no effect on other complex M.E. symptoms.

Next thing we know, Steph is swimming. Slow but sure signs of recovery. They had to stick a bit of Graded Exercise Therapy (GET) in there, to placate the Psych school, didn't they? She's back at work, too, and Bob's your "fit for work" uncle! DWP kept happy (if deluded) too! Sorted! Simples!

-CFS caused by the above - cured. Tick.
-M.E. caused by faulty neuro-immune/endocrine damage - no dice. Cross.

Twitter was on fire. For genuine PWME, knowing we have each other's understanding is one of the few things that stop us despairing. Stop us going crazy under the added pressure of the media and government's refusal to show M.E. as it actually is. Not the way it would be convenient; that is, if it could morph seamlessly into Chronic Fatigue and then melt away with a bit of diet and lifestyle gobbledegook leaving patients glowing with health and grateful to every quack and charlatan.

WARNING: Don't watch the codswallop on the first link below if you actually have Myalgic Encephalomyelitis rather than a bit of mild "chronic fatigue" without
a) watching your blood pressure
b) having a pillow to punch and/or bite
c) being in a mood to laugh rather than cry
d) realising some of these buffoons will one day have to eat their words

The Food Hospital Series 1 Ep7 on Channel 4 First Broadcast 8-9pm 13th Dec 2011 Serious chronic neuro-immune disease or a bit tired and hungry? PWME watch at own risk! Opinions expressed on this blog are my own.

Dr Esther Crawley talks to John Humphreys on BBC Radio 4  (John Humphreys surprised it can be genetically inheritable, and happy to revive "Yuppie Flu" and "M.E. properly called Chronic Fatigue Syndrome" etc. Makes you realise what he was actually thinking when he was in the flat of a woman with M.E. in his benefit cheats programme.)

Dr Ian Gibson talks on BBC Radio Norfolk about who & what is really behind this refusal to accept M.E. as a neurological disease  Dr Gibson is honest about the real vested interests that insist M.E. is psychiatric. Namely the man who "runs the whole show." (*cough* Simon Wessely ??? *cough*). Surprise, surprise. So refreshing to hear someone with real expertise saying what so many have long suspected. We're not out of the woods. But somebody must be running scared by the truth!

A voice crying in the wilderness?

The Welfare Reform Bill is now in the final stages of being read and voted through the House of Lords.

Yesterday came the dire news that under Universal Credit, all but the most severely disabled children's money will be halved. Yes - disabled children's means of support snatched away to pay for greedy bankers' mistakes. It is nearly Christmas. But tragically this isn't Dickens' "A Christmas Carol" we're reading in front of cosy fires. It's the reality of living in the UK.

This comes as we're still reeling from the announcement that cancer patients undergoing chemo are to face the shambolic humiliating pantomime of the Work Capability Assessment, that is proving so deeply flawed.

In more positive news, I got excited to see M.E. had crept into the midst of top news stories today. It was about BMJ Open's research here: BMJ Open: Unidentified CFS/ME is a major cause of school absence . The item on BBC Breakfast Time this morning can be watched here: BBC Breakfast : Chronic Fatigue Syndrome 'affects one in 100 pupils'

Can the Government continue to ignore and downplay M.E. after this? The cynic in me says of course they can. And will. The believer and fighter in me says, we have to move forward in hope and thankfulness. We can still light a candle in the dark.

Not wholly surprisingly, the impression viewers were left with is that M.E. is identical to the umbrella term "chronic fatigue symdrome"; and the mistaken myth that the disease myalgic encephalomyelitis can be cured in the shake of  lamb's tail by a spot of CBT and GET before being fully diagnosed.

Meanwhile, it's taken most of my spoons to get through the simplest tasks in the lead-up to Christmas. Last week I "paced" myself through sending, emailing, addressing, personalising my usual batch of around 200 cards. That put me out for the count for days afterwards.

On Saturday, with lots of support from my mum, I managed to put up a tiny nativity set on my window ledge and decorate our small tree that sits on the floor where I don't have to stretch much. Trailed tinsel round a few surfaces. Stuck the cards along the closed piano lid. Pinned "Peace on Earth" banner to one wall. Placed a few candles on the mantelpiece. That was all I could manage, and plenty to make the room look ready for the quiet time chronic sickness demands I spend. Don't get me wrong. Jesus' birthday will be filled with joy for me and mine just the same!

What energy and health "spoons" I've got left I used to cajole my addled braincells into writing a letter and an email to try and do my little bit to challenge the worst Scroogeliness of the Government.

First was a letter to Baroness Benjamin, Lib Dem peer in the House of Lords. Well, I used to watch her on BBC's children's programme 'Play School' playing with Hamble, Jemima and Big and Little Ted. Maybe she owes us one? Seriously, she has a heart for children. I wrote to ask her to oppose the proposed one year time-limiting of ESA (Employment and Support Allowance), which will impact on children within affected families too.

The second was an email to David Cameron, the PM. The Commons, not least his partner in crime Nick Clegg,  have been giving him a rough ride this week over his veto on the EU. Yesterday I did my part to encourage him to reconsider this halving of benefits to the families of disabled children. Neither issue may affect me directly, you may say. But, "we're all in this together" is true in my mind, even if David Cameron only mouths it when it suits. In the words of the Manic Street Preachers: "If you tolerate this, your children will be next."

Now we know this to be true, how can we stay silent?

..........................................................................................................

Letter sent to Baroness Benjamin (Lady Floella Benjamin) via the House of Lords:

Dear Lady Benjamin,

Time-limited Employment and Support Allowance: Welfare Reform Bill Report Stage & Third Reading

I am writing to ask if you would consider voting against time-limited Employment and Support Allowance (ESA)? The proposal is to limit this to just one year, and can still be opposed, I believe, in the coming Welfare Reform Bill Report Stage and Third Reading.

People with serious illnesses and disabilities are in despair at the prospect of being left with no income, scarcely able to function at home most days, let alone work. While I live alone, I feel I have to ask your help for others, including young people, who will be adversely affected by losing means tested ESA after twelve months if they live with somebody who happens to be fortunate enough to have an income at that time.

I am a Methodist Minister, ex-junior school teacher, formerly the first English Methodist Mission Partner to Sucre, Bolivia. In 2007 I was forced to retire from my calling and profession by the neurological auto-immune illness Myalgic Encephalomyelitis, against which I had already been battling for over a decade since contracting giardiasis working in South America. If ESA were to be limited to one year, it would imply some miraculous cure is envisaged by the Government within that year. 
 
Like me, many disabled people are unable to work, even were jobs actually available, through no fault or “lifestyle choice” of their own. 
 
People with serious, lifelong, degenerative or fluctuating relapsing-remitting conditions will all be affected by this, children, young people and adults alike. People with Multiple Sclerosis, Myalgic Encephalomyelitis, some forms of Cancer, Parkinson’s Disease, Cardiovascular, Renal & Pulmonary Diseases, Mental Illness and many others will be left cut adrift from all hope and help, in spite of much empty rhetoric we hear to the contrary from Lord Freud and others. Meanwhile the media increasingly demonises all sick and disabled people and paints them with the same brush as benefit cheats and scroungers.

The one year time limit proposed for ESA is surely unfair and at best mystifying to right-thinking citizens? Where are the jobs or cures that make it reasonable or humane?

I know that at your Liberal Democrat conference earlier in the year, members voted overwhelmingly to oppose any such arbitrary ESA time limit. I respectfully plead with you, on behalf of all the genuinely long-term sick who are now living in dread of this, and so many other crushing blows from the Welfare Reform Bill, that you stand up for the most vulnerable members of society.

Many thanks for your understanding,
yours sincerely,
etc

................................................................................................................................


Email to David Cameron about cuts halving benefit to disabled children:


Concerning benefits for families with disabled children


Dear Prime Minister,

I am concerned about the 50% cut to benefits for many low income families with disabled children which was, to the horror of all right thinking citizens, voted through the Lords today.

Families with disabled children incur higher hidden costs, as I'm certain you know. These costs are worryingly high in wintertime. Many families with disabled children are forced to keep their heating on when mobility is impossible.

Any cuts to these household budgets already reined back to the bone are frankly inhumane. Your Government is proposing that within the Universal Credit, Disability Additions will be 50% lower than their current rate. £1400 less per year is more than these families can cope with. Why would you target unnecessary cuts at the most vulnerable disabled children?

I hope this Christmas you can find it in your heart to relent at the brink of this immoral and deadly mistake.
Yours sincerely etc

Why Are We Waiting? Carry On Up The ATOS Assessment Centre

I know how uncomfortable and step-ridden one of the ATOS Work Capability Assessment Centres in Northern England is. It's the one I had my last assessment at in late 2008 at which I was passed as unfit for work. There is a ramp, somewhere, allegedly, but you have to have eaten a Sat Nav to locate it, if memory serves. Which with brain fog, it most probably doesn't!

I heard today about another friend who had her WCA there this week. She was accompanied by her husband. She has had serious health problems for some time. After having to be off work frequently through no fault of her own (she has nurse training among other skills and was doing a job interviewing patients) there was some difficulty with her colleagues making her life hell because they were having to pick up extra duties in her absence. She's conscientious, hardworking and very caring. Nobody felt worse than she did about being in this position. As her condition deteriorated again, her doctors told her she would never work again and she was forced to leave her job permanently.

When she got to this ATOS Centre in the city, she found herself in the waiting area with another man. The man was obviously in some considerable discomfort because of the low chairs with no arms. The wait dragged on. And on. Apparently four of the ATOS Health Care Professionals on duty that day were off sick. Ironic but true.

Luckily, my friend had taken the necessary medicines with her to last through the lengthy wait. The other man, who was with his wife, was having to move around in his chair and stand from time to time as well as he was able, to relieve his pain. He explained to my friend that he was afraid his back and legs would go into spasm if he remained in the uncomfortable chair. I remember when I was there, if I could have got down and laid on the floor rather than balance, draining every last ounce of spoonie energy, I ached to do so. My friend could clearly see what agony he was in, as a nurse is trained to. Perhaps ATOS had hidden cameras to prove my friend "fit for work" because she could "diagnose" someone else's pain?

The man's wife asked the girl on reception how long the wait might be. She was curtly told that couldn't be divulged. The wife was almost in tears at the cavalier treatment of her husband. My friend, unable to ignore this (as a compassionate human being?) also asked the receptionist if maybe a cushion was available to relieve the man's predicament and perhaps elevate the seat a little? No surprise that this was also stonily refused. When my friend began to reason with the receptionist, asking: "Are you a nurse? Because I am, and I'm sorry but I can see he's in distress," the receptionist merely glared.

"No, I'm not," she snapped. There was a further lengthy wait till a small cushion eventually materialised.

We can be in no doubt now that we are, as Lord Freud so tellingly put it in the House of Lords Welfare Reform Debate, "stock" to the Government and their cohorts, not real citizens with skills, integrity or a history of  hardworking contribution to the world outside their windows.

My friend asked how many other "customers" (not her word!) were already in with the HCPs, to give the man an idea how long he would have to go on waiting. She was told it simply wasn't possible to say. (Nobody ring the fire alarm, then!) My friend politely but firmly persisted. She said she could understand the need for confidentiality, but could the girl just tell her if she was next in? This was grudgingly granted. She was indeed next in the queue.

"Then can this gentleman go in front of me? He's in agony!" said my friend, feeling this was the least she could do to help.

This was sanctioned. Not with particularly good grace or any modicum of proactive help on the part of the ATOS staff.

When my friend finally got into the office for her turn, after another long wait, the HCP at the computer terminal was a nurse. The nurse looked goggle eyed when my friend began to explain the name of her condition. She knew none of the symptoms and effects but tapped incredulously away at the screen. She didn't know the medicines prescribed or their side effects. Luckily my friend had all this at her fingertips, though she expressed a little surprise that the great detail about her disease she had taken the trouble to describe on the ESA50 form, seemed not to have filtered through to the HCP.

The HCP said dismissively: "I don't even know what you're talking about," as she had to have the name of my friend's condition spelled for her to type in.

"But I put all this down in detail on the form..." my friend began.

"Oh, WE don't get that." sneered the HCP impatiently. As if!

After hearing all about the illness, the ATOS woman concluded the appointment with: "I can't help with this, you'll need to come back again and see a doctor."

So my friend has to undergo a similar ordeal again in a couple of weeks, this time with a doctor ATOS HCP. Instead of this nurse ATOS HCP. If they'd actually bothered to read the form, and it wasn't just floating round in the ether for postal staff and/or Job Centre Plus non-HCPs to disregard, maybe this double ordeal could have been avoided.

But that's not the object of the exercise, is it? That would smack of respect and businesslike good sense, even compassion. And that, by all accounts, is disturbingly thin on the ground.

Meanwhile my friend is still more upset about how that other poor chap was treated, rather than herself. That's the nature of many "scroungers," "cheats" and "scum", you see. Genuine long-term illness changes us overnight from pillars of society to something the Government, media and increasingly society at large, believe they've just wiped off the sole of their shoes. I don't know how we ended up lying in the gutter, but nobody can stop us still caring, or looking at the stars.