Wednesday, 2 October 2013

Monday and the DWP

Monday.....start of a new week, same old same old? Body not changed, still won't behave or allow me to do the things I used to do, pain still there every waking (and most nights now sleeping) moment.
So it is Monday, why is this different this week?
I decided to take my courage in both hands and telephone the DWP.
On April 17th I returned my form, photos and consultants letters and other evidence to ATOS as proof that I hadn't been miraculously cured in the year since they had assessed me previously.
I again pointed out what progressive meant and even put in a fact sheet for them on Pustular Psoriasis, palmar plantar pustulosis and psoriatic arthritis, temporal arthritis and koebner phenomenon. 
Yes I have all of the above, lucky me eh?
You would have thought with all this going on I wouldn't have been unduly worried about the result of the re assessment wouldn't you?
Wrong, with all the evidence pointing to ATOS and DWP finding cancer sufferers, ME sufferers, chronic conditions being found fit to work either straight away or in the near future I was petrified.
I waited, weeks passed and nothing, more weeks passed and still no brown envelope telling me my fate.
 It may sound dramatic to say I lived and breathed the fear, stress and tension of watching for the postman and waiting for that decision letter to hit my mat but when you understand the removal of the ESA benefit or placing me in the WRAG group and making me fight them would change the quality of my life you will see how important the 'right' decision was to me.
Why? Simply because we depend on this benefit to survive from week to week, not luxuries or even a great standard of living but it makes the difference between eating and starving so it is dramatic!
I hesitate to say we are dependant on social security as it seems these days to congure up images of lazy, feckless people lying around until noon and then rolling out of bed to sit Infront of a huge tv for the rest of the day, this is of course the image the government and their lapdog press have set out to give people.
The reality is very different for people like me and many others who have been left with no option but to rely on social security. I struggle with my health condition on a daily basis, I have always prided myself on adapting to the changes quite well and still pushing to be as 'normal' as my condition would allow.
Trying to do things, trying to get some enjoyment out of my days and trying to let Trevor (hubby) still keep some of his interests and enjoyments even though he was having now to care for me 24/7 
The reason I am explaining all this in relation to the ESA re assessment is because I realised after a month or so that waiting for this decision letter was changing my behaviour.
I was scared to attempt to do things Incase I was seen as not being sick enough any more
I was scared to be seen out Incase the one day I managed to walk a few feet was the day an ATOS/DWP spy saw me and questioned my ability. 
I was scared to appear too happy Incase that was seen as being fine and not bothered by illness.
I was scared, scared to death of this department that held my future in their hands.
Yes I had all the evidence, yes my condition was known about, yes it is progressive and I had proof from consultants etc I was not going to 'get better' and yet this department had all the power over my well being and I felt I had none.
The stress was enormous, it affected my every day, it caused my condition to flare more than once.
On July 2nd I could stand no more not knowing and I telephoned DWP who told me they had nothing so it must all still be with ATOS.
ATOS informed me that yes they did have it all but they hadn't looked at it yet and did I realise they had 13 weeks grace from the DWP in which to make their decision before passing it back to them.
The telephone call had taken so much effort to make I was left no wiser and shaking and very upset, we really don't count as human beings do we? These people are allowed to treat us with disdain, keep us waiting knowing the anxiety this must cause.
I sat myself down and had a talk with myself, I couldn't go on like this, I was losing the plot, now I knew waiting on the postman was futile for the foreseeable future I had to somehow put this to the back of my mind and carry on with life. 
But with this hanging over your head that is impossible, you read every sorry about what's happened to others in same position, you talk to people going through the same process, how long have you waited? Is this normal now? How are you coping with the not knowing?
It truly is like living under a cloud, a dark cloud that just won't lift. 
The last few weeks I have asked myself the same question 'why don't you ring them again and find out?'
It was a scary prospect, did I want to draw attention to myself? After all the benefit was still being paid to me at the moment so why rock the boat?
What if it still wasn't decided? Would that make it worse knowing they were taking so long to decide?
What if they hadn't even looked at it yet? I know many of DWP offices have horrific backlogs.
I got talking to a few friends on twitter Sunday who were also waiting and felt exactly the same as I did, the worry among us was palpable and one theory that kept coming up was that DWP may be waiting deliberately until the rules change on 28th October, these new rules mean there is no immediate right to appeal, it has to go before the DWP for a second time to see if they will change their mind before it can go to tribunal. No payments whilst this goes on and also no back pay if it turns out they are wrong and the decision gets reversed at appeal. 
How frightening a prospect is that? What on earth are people supposed to survive on?
But Monday morning I decided it was better to talk to someone and find out what the situation was than to carry on stressing and wondering so after several deep breaths I rang DWP......
Next installment next week.......

Ok ok I am joking
I have been kept in the support group and they will not look at me again until July 2016
Apparently this decision was made in July, the letter, the dreaded brown envelope must have gone astray!
The relief, the lifting of the stress and anxiety was instant. I asked for a copy of the decision to be sent out to me as I don't think I will quite believe it until I see it in black and white.
After the lady had sorted out sending me a copy I made her repeat what she had told me once more.
I was in the support group and wouldn't be looked at again until 2016..... Yes that was definitely what she had said, I hadn't dreamed it.
I managed to hang up before I burst Into tears, I have been believed, the evidence has been believed, they should leave me in peace to cope with my medical condition now unless things change.
I feel safer, not entirely safe still as we never know what this government are going to come up with next to make us jump through hoops and make our already difficult lives more difficult but you will understand if for now I celebrate my small victory and have a smile on my face for a while won't you?


Anonymous said...

Hello Penny, I almost in the same boat. The forms went off to ATOS, and came back saying I didn't have to work etc etc. It was a strange feeling, reading back our submissions and thinking, my gawd I really am ill. I have a constant 'thing' in my head that maybe I am just imagining this; (Years of being told its growing pains/all in my head/not a real illness but something my head has conjured up). Anyway, the same feeling re doing anything outside the house, or being seen to enjoy life. Its such an 'us & them' world. 'They' are lazy workshy etc etc. Its all polarised by our dear government - who is for 'working hard' people - not old not elderly etc.I hasten to add my ATOS submission was the trurh - I found the DWP checking on my status at Linkedin - I only joined to boost the numbers for a friend. Such is the culture I have deleted my a/c.

Penny Mead said...

Hello anonymous
That 'all in your head' feeling/belief is something I think a lot of us struggle with not helped when government and some members of society seem to be saying just that to us all the time recently. It's hard seeing your condition written down Infront of you isn't it?mespecially when we have to go I to such detail to prove again and a gain that we are worthy of the help we need.
It has helped me to realise I am not alone with these feelings etc and I hope it helps you a little bit too.