DYING! How to halt medical & update ESA50?

Sorry this is long, but what has happened to me needs exposing. My questions are at the end.

I have had a horrific experience with a negligent GP, and am now in the process of trying to find a new one - but a letter came the other day with a summons to Atos on Mon 7th October.

After 25 years of deathly fatigue, excruciating back pain and severe increasing weakness (as well as widespread arthritis, butterfly rashes on face, and rampant inflammation and autoimmune activity showing on blood tests) the docs insisted I had 'fibromyalgia' which they claimed was a behavioural problem due to a 'low pain threshold' . (No offence intended to anyone with fms, which I believe is really a neurological disorder anyway).

I also have hereditary ehlers danlos syndrome which has affected my eyes causing chronic and uncorrectable double vision. It meant that even when I could still walk short distances, I could no longer safely find my way around unaccompanied, or cross roads safely.

I am now housebound and for the past 2 years mostly bedridden. I can not stand unsupported without staggering and falling. On good days I get brief windows of time when I can manage a few steps, holding a walker for the exhausting struggle from bed or sofa to toilet etc. Sitting upright for longer than five to ten minutes causes me extreme exhaustion and severe pain. I just SLEEP all the time and have NO control over this. I hate it. The only times I leave the house are to crawl into taxis to get to unavoidable Atos, DWP and doctors appointments.

Despite a quarter century of chronic illness and progressive disability, Atos and the DWP deemed I would be fully recovered and fit for work after 24 months (they have come and gone and I am much worse). I was too weak and ill to fight the WRAG sentence at tribunal - and I am beginning to suspect that the reason I was dumped there in the first place was, that my jobsworth GP's surgery must have f-ked me over.

Every time I've been dragged to Atos medicals or bullying WRAG sessions at the jobcentre, the stress and physical exhaustion involved has triggered a massive autoimmune flares with severe flu-like symptoms lasting six weeks or longer (plus another couple of months to 'recover') and leaving me with permanant exacerbations. Atos, the Jobcentre and my GP have all been informed of the harm and physical damage this harrassment continues to cause me.

The doctor I'd been seeing at the surgery for the past year had been reasonably helpful. I'd started getting parkinson's symptoms (already quite severe) and he'd promised to refer me to a neurologist. However when I made my most recent appointment I was told this doctor had resigned, and I was allocated to a different GP.

When I brought up the severe Atos/DWP-triggered autoimmune flares with this new GP last week, her response was to sneeringly tell me I had better get used to it, as 'if Labour get in they will continue the same policies'. She flatly refused to provide evidence of my conditions for Atos, or sign the standard 'Risk' exemption letter for the ESA regulations.


AND THIS IS WHERE THE HORROR STORY REALLY STARTS...


The new GP had never heard of Ehlers Danlos, and when I tried to describe how it affected me, she ordered me to refer to it as 'hypermobility' (despite the fact I have eye and skin involvement and other issues).

Then she axed my neurologist appointment (obviously to save the surgery money) telling me nastily that my worsening parkinson's symptoms were just 'hypermobility'(!). She also blocked a previously agreed rheumatology visit, saying it would be a waste of time (money) because 'hypermobility is not curable'.

As a desperate last resort I begged her to refer me back to a physiotherapist I had seen previously (who incidentally had been the first one to notice my parkinson's rigidity and tremor and urge me to get it evaluated).

She agreed to this, and printed out a referral note from her computer, handing it to me to fill in my details at home.

I took the form home, looked at it, and nearly fainted.

The computer had spewed out a list of some of the tests etc I'd had done.

AND THERE IT WAS:

Since (at least) 2010, this surgery has had me diagnosed with ADVANCED KIDNEY DISEASE, (presumably from one of the general health checks they used to do properly before the Tories gave them control over their own budget.)

And the Surgery had never bothered to tell me.

That I had a potentially terminal condition.

I have had two close relatives die of the same thing in the past seven years.

No wonder I have been feeling so ill.

The years of "excruciating lower back pain", had really been "excruciating kidney pain" from life-threatening kidney disease left undiagnosed and untreated.

Who knows how much further this disease has advanced in the four years since they 'secretly' diagnosed it in 2010 - with no follow-up?

I suppose it was just better for their budget to let a disabled useless eater like me drift along into an early grave with no expensive referrals or treatments. "Don't tell her or she'll want a transplant. This way she'll never know".


And then another penny finally dropped because the two relatives with kidney failure had also been diagnosed with LUPUS/SLE. All my symptoms have been identical to theirs and the only reason I assumed I couldn't have lupus like them, was because, as far as I knew, my kidneys were okay.

With the battles I have had the past 25 years with disability-denying doctors, I suspect the Lupus won't get diagnosed until my autopsy.

Maybe someone will carve on my tombstone "It really WAS Lupus - not laziness", and finally clear my name.

At least after all these years I finally have it written down in black and white, that I do, indeed, have kidney disease, a 'real' illness and am not a liar or a scrounger. There again I am sure Atos will tell me it is curable.

I would be petrified to ever return to that murdrous, negligent surgery, but the stress and red tape involved in trying to find a new doctor is doing my head in.


But I can see no way that finding a new GP and getting rediagnosed can be sorted out before my appointment with Death Atos in just over a week's time.



...

RELEVENT FACTS:


My ESA50 form was submitted in April.

My overall condition and the parkinson's symptoms have become significantly worse over the 5 months since then.

Due to issues such as my eyesight alone, it seems bizarre that I was not put into the support group two years ago. Why assess those who can never recover and then lie about it? (Oh, right, the taxpayer PAYS Atos for doing that!). It's fraud.


If I go along with this 'medical' like a lamb to the slaughter, Atos and the DWP will 'deny' the kidney disease (and the Lupus which should have been diagnosed 25 years ago!) because I didn't know about it to mention on the form I sent five months ago, and because my condition will not have been corroborated by my lying, backstabbing GP.


Depending on how far my condition has advanced, I may not have much time left. It seems I will be forced to spend it being hounded and terrorised by the DWP, Atos, and self-serving, greedy, incompetent jobsworth doctors. It has left me seriously wondering whether I'd be better off bowing to fate and just ending my own life now...

...


SO MY QUESTION IS THIS:


(How) can I do the following:


* I need to (somehow!) persuade the DWP to postpone the Atos medical and issue me with a new ESA50 so I can provide updated information about my condition. But HOW?

* If possible I also desperately need some way of gaining extra time (a month won't be so long enough) for my new GP to get me correctly tested and rediagnosed (hopefully including the Lupus and Parkinsons) so that I have 'persuasive evidence' to defend what's left of my life.

Surely other people's conditions/diagnoses radically change when there is a five month gap between submitting the ESA50 and the medical?

* Is there any DWP ruling on what rights a claimant has when they get worse waiting for the Atos medical and need to restart the reassessment process back at the beginning?


This is so overwhelming.

I need time and space to come to terms with a life-changing diagnosis, put my affairs in order, etc. Instead I am being driven from pillar to post by murderous government thugs.

Is there any way at all to get the Atos medical halted until I have submitted an updated ESA50 - or am I condemned to be smashed to death by this insanity?

How do I go about sorting out any of this?

I can't see any light at the end of the Atos Horror Train tunnel.

Please help.

Thanks.

Siss X

Gordon wrote: Sissycat

ESA is not assessed on your underlying conditions, and will have already therefore included details of how you are affected by this "new" diagnosis on the form, even if you did not know about it. They will ask what you would have written differently had you known!

Gordon

Hmm.. Well over the past five months my ability to walk, stand, or sit unsupported have all severely deteriorated, and I spend many more hours every day laying in bed too weak to talk or even lift my head from the pillow.

The pain is much worse and the meds don't work.

I can no longer keep food down... etc.

So I don't want to be assessed on how I was last April because my 'limitations' are drastically worse than they were then.

My ESA50 is now 5 months out of date and grossly underestimates my current condition.

The DWP's delay in calling me to this medical means I will not be assessed fairly.

When they already know I have several degenerative conditions that were bound to have got worse, it is discriminatory and a dirty trick.

If I'd been this ill last April but since improved, I hardly think they'd still be so keen to assess me on the basis of my historical condition.

This kind of delay is discriminatory against anyone with a degenerative disorder.

After this length of time for a claimant with several progressive conditions, either the medical should be sheduled promptly, or a new ESA50 should have been issued automatically to get an updated picture.

Unfortunately I can't discuss any of this with 'my' doctor until I have battled through the gruelling process of finding a new one, which could take weeks.


According to a FOIA, there is a LONG list of conditions listed in Atos's contract that are supposed to exempt claimants from forced travel to interview. I have several of them and they are all listed on my ESA50. As such Atos should not be calling me in anyway - but it's a loaded gun to my head.
www.whywaitforever.com/dwpatoscontract.html

BTW every ESA form I have submitted was done religiously following the advice in the pdf's I paid for in my repeated subscriptions to benefitsandwork. Yet Atos is still telling me I am fit for WRAG and unpaid slave labour on the Work Programme.

On the bright side, perhaps I'll already be dead before the appointment.

I am really beginning to hope so.