Surviving pip assessment.

[Starry]

So a little pip update. Had a guy come yesterday. I was flat out on the sofa in sunglasses and fading fast. Think he was new, but qualified nurse trainer. It took 2 hours. Reliving my viral meningitis was very traumatic and I broke down twice. He did take my ME seriously and it does score points but from the sequence of illnesses Endo doesn't normally. Annoying as mine was not the normal variety but rare severe bowel threatening form. By the end could hardly talk and he was filling in my answers for me and I was telling him to just pick a number for some silly question. He was empathetic, seemed a bit shocked at my predicament, said he would do his best and a physical exam would be inappropriate so did get concept of PEM. Between the lines I think PIP is just not designed for me. Fatigue and pain however incapacitating just don't score enough points. And the threshold is super high. Only time will tell. Will not be putting myself through it again. Nor appealing.

[Hidden]

It is designed to prevent people getting money and the assessors job is to underscore you as much as they can and trick you into doing things so they can mark you down.

In northern Ireland the group that carries out assessments has come under fire for widespread actions as I have outlined above - they have very dubious work ethics and practices.

NO ONE in our condition, or indeed no one who needs a PIP assessment should have it alone. If my wife was not there to answer the questions, (and force me to sit at the kitchen table) I would have lay on the sofa and gone to sleep!

I hope things work out but if they don't make sure to appeal - many people here were denied PIP/DLA on initial assessment but won on appeal. I know one man with terminal cancer anxiety and depression who was denied but won on appeal.

Best of luck.

[Starry in reply to Hidden]

Thanks Raffs.

Hope things are not too bad for you and the drumkit is still in use.

Fall asleep. That's pretty much what I did lol.

I'm very curious as he was a new hire nurse contractor as they are building the service which has had a terrible reputation.

He started sceptical but by the end had changed his tone and knew I wasnt "gaming". I could not have done more but forgot stuff but with a not totally unfavourable assessor it will be interesting to see what response it is.

Apparently 70% of appeals were supported in my postcode in 2017.

Living rural the blue badge would be a lifeline.

wattonandswaffhamtimes.co.u...

[Hidden in reply to Starry]

Christmas knocked the . ahem, 'stuffing' out of me so not been fit to get near the drums since. Been in a horrible place - too tired to do anything but not able to sleep fully, (although I can snooze away a good part of the day).

I am likely not helping myself by doing more than I should when my health permits but I like to have some productive time.

I am aware of at least 2 retired nurses in my area that have gone on to become PIPS assessors - hope they take the caring nature of their old jobs to the new. Fingers crossed on the assessment, let us know how you get on.

[VMroom]

Hope you have recovered from this Starry as have heard from others how stressful the whole process is & can make you more ill. Not what you need x

[Starry in reply to VMroom]

Thanks Vroom. I think I got off lightly compared to some.

The brown letter came today and I was awarded it so feel very lucky. So many equally or more deserving people aren't.

[Hidden in reply to Starry]

CONGRATULATIONS.

I am delighted for you. It must be a huge weight off your mind?

[Starry in reply to Hidden]

Thanks Raffs. X It was a mixed feeling. Being official proof of being disabled but yes massive relief after all the horror stories to be treated fairly. I can apply for blue badge now for when I do start trying to leave the house.

Hope your post Christmas crash is easing a little. Mines proving very stubborn.

[VMroom in reply to Starry]

As you say mixed feelings but relief I'm sure too. Do you believe as you learn about the condition more to gradually over time hopefully avoid boom bust, eventually you could recover? If you do then temporary disabled. I am being realistic & talking years of course! But you know what I mean in the back of your mind?

I am trying to come to terms with the idea of PIP & horrible process. Im lucky to still have sick pay for a bit so am ignorant of it yet & dread the thought as live in NI.

[VMroom in reply to VMroom]

Thinking about my temporary comment, I dont know, hard to get head around being final. Understand what you mean. I think I'm halfway where you are in this process since VM so still have all this ahead of me so likrly still naieve.

I hope you have support x

[Starry in reply to VMroom]

Aww hugxx

I don't know is the answer. I am past anticipating full recovery now, and closer to acceptance than I was. I have hopeful phases and unhopeful ones. I'm currently in the latter due to this epic crash. My first so prolonged. having lost the ability to just go round the block with my dog really hurts.

I definitely made myself worse by pushing not pacing in the beginning before I knew and not reining back activity inside my energy emvelope properly when first told, maybe denial, also not understanding how me works.

At my age whether I can regain it again I don't know. I'm having my longest ever crash so it can, be hard to stay positive. Atm I don't really believe I can ever get back to work with its stresses and demands anymore. I visit the global me action fb group and feel hopeful there's research and some experimental drugs but angry these drugs aren't available over here even to try.

Atm I am chasing a pots diagnosis mostly, in the probably vain hope it's all a big mistake and it not actually M. E. That I have got but something treatable

Main thing with pip is medical evidence so even now for each new symptom get it on your medical record or a referral where suitable. As they always write a history. NI has not a wonderful rep for PIP , but so did my area and odds are helped by filling the form right and the luck of your assessor being fair. If you've evidence and filled the form well your appeal if you've had a bum assessor has good odds. I am sure the viral meningitis helped me be believed.