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We want to hear from you: please tell us about your experience of the online community.

Introducing myself.

Hartley

Hi
My name is Mark. Just joined yesterday,after searching for info on benefits,PIPS,Ucredit and all of that fun stuff!
Doesnt seem to take long before you come across the horror stories.

Not sure where i bore you all with the diagnosed conditions i have, but i'll search through the site and maybe find where.

All the best

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steve51

Hi @Hartley

Good Morning & Welcome ??

Yes we have got some great info on Benefit’s on here.

https://www.scope.org.uk/advice-and-support/benefits-funding-extra-costs-of-being-disabled/

Yes we have got many members who have lost their cars due to missing out on the new “pip benefit”I am still waiting for mine to be “recessed”

I do hope that this is helpful??

@steve51

Hartley

Thanks. I'll check those links soon....Actually propped up on 3 cushions on sofa..Neck arthritis is is off the chart at the minute.

Must be such a challenge when a life line(a car) is taken away from you. Its beyond me why the DWP are doing this? other than £££ being the driving force behind their decisions and willfully blinding them to peoples REAL needs.

steve51

Hi @Hartley

No Probs!!!!!!

Sorry to ask but what is the status with regards to your (PIP)

Many thanks ??

@steve51

Hartley

I havent applied yet.Im in the process of a work capability assessment with UC.

13th June this yr ,was my first St Thomas' hospital london pain management clinic,appointment.
Im going again 31st July(so next wednesday) then a 3 week stay in the near future..
Have all the evidence and 2011 official diagnosis...but we all know what UC credit is like right

steve51

Hi @Hartley

Yes I have too date gone through 3 + Pain Clinics with unfortunately no reduction in my pain.

But please don’t let that worry you as yours looks much better straightaway.

@steve51

Adrian_Scope

Welcome to the community @Hartley. I hope your appointment on Wednesday goes well!

Hartley

@steve51

2011 Fibro/cfs diagnosed.(although it was there 7years before this)
2009 Cellultus that progressed into Septicaemia,blood poisoning...had to be rushed into Hospital.
2011 c5 c6 disc herniation9large) stenosis,permanently pushing on spinal cord.
2007 Trigeminal Neuralgia /occipital possibly brought on by head injury in 1986.Knocked out ,punched in the face(assaulted) so knocked out whilst standing, then went back and hit head in the occipital area, right on the 45 degree part of a stone riven curb...major whiplash .Major Tinnitus since that time and the Trigeminal,tmj issues....TMJ 2014 diagnosed but was there way back to 86'

Asthma peak flow of 200 6ft tall and 17 stone..it should be 600+
Right shoulder rotator cuff surgery 2014 bone spurs, tendons reattached ,titanium screw/anchor..biceps groove,corrected.
Op wasnt totally successful and cannot lift,due to bursa inflammation and impingement.. supaspinatus tendonittus..
Its a bit of a mess in there.

Right ankaloyd wrist fusion .exploded my right wrist in an altercation(Rage ,frustration issues and puberty(will link later)
Exploded the wrist on impact..was never repaired(this is the 80s) so its fused.

Broken nose 86..right across the bridge from one socket to the other...Bedford hospital called me and said " we see you are on the waiting list for tonsillectomy, Can we correct the nose at the same time"....I said Yes...lol
104 temperature ,,,horric experience,and had "genuinely without exaggeration" 2.5ft of gauze rammed up each nostril..packed!...dangling down the back of my throat 2"....tonsils wounds the entire back of my throat..bleeding ,couldnt breath through nose...so dried out my throat that cracked and bled... Neveeeeeeeeeeeeeer again!

I think thats the entire laundry list...apart from severe arthritius of neck....lumbar spurs and nerve impingement,sciatica...
t spine spurs strangulating a vein and nerve impingement..

All of this i have had to send to Universal credit...plus at 51 i got diagnosed(i was in denial) Autism june 28th 2019.Twinwoods adult autism services..
It took the Dr and the multi disciplinary team 1.5 hrs to diagnose...It was so apparent to them.,,,not sure how i take that..lol
The achilles heel ive always had is i dont classically look Autistic,whereas my son(Autism,vacant seizures and now epilepsy twice since Aug 8th last year)looks physiologically autistic if that makes sense...You just know ...

So i was just considered a (i wont mention all the labels and names..lol) Hence the many physical altercations i got into..due to the sheer frustration..
Im only just coming to grips as to all the symptoms as ive lived with them for 51yrs and didnt know others couldnt hear the tinniest pin drop...or notice patterns in things...

Anyhoo...its certainly not a game of top trumps...and can relate,in part ,to your one sided issues...mine are right sided.
Bless you for having an op....i can only imagine how serious that would have been.

Heres to hopefully lifting eachother up...and i wont need to mention all of the above again9i'll just refer people to this post.My C.V

steve51

Hi @Hartley

Thanks for the reply!!!!

Sorry for more info!!!!!

One of my Brain Opp's that I have have had was with "Radiation" which didn't work but it gave me "Chronic Pain 24/7"

So I haven't got a "Good Side" anymore!!!!!

All of my "Brain Opp's" have been done whilst I am "Awake"

"Spooooooooky" being able to speak to my "Consultant" whilst he is doing the "Business"

I do hope that you are having a good day????

@steve51

April2018mom

Welcome.
Hopefully your appointment on Wednesday goes well! I know how you are feeling. I’ve had that same feeling myself before appointments too. Especially long ones.

Hartley

I actually received a call from London,saying their machine (they only have one apparently) is broken!#

I have just brought my tickets for wednesday today///

Will have to get a refund tomorrow..and may have an admin fee taken off...

Plus,St Thomas' doesnt know when the machine will be mended..so im now left hanging.
Not much i can do really..

Hartley

steve51 said:

Hi @Hartley

No Probs!!!!!!

Sorry to ask but what is the status with regards to your (PIP)

Many thanks ??

@steve@STANDUPOAP

Regarding PIP.

I may apply after i know whats happening with UC...i no longer fear if UC say i have to work..(it would be insane if they do, but alas ,they seem to do this alot) As all i can do is end up having whomever employs me,being a witness..As i k ow for a fact, i doubt i'd make it to lunch time...And truly thats not whiny, or exaggeration but absolutely true.
I actually hate hearing myself at times,as it seems to define who i am...when infact i dont want to be associated with all the minutia,and ever twinge ache, symptoms...Its like a permanent C.V.

So i'm learning to let go..(obviously i have to disclose my illnesses to whos asking) but beyond that...im not going to push....People will have to witness how i am and realise the truth of the matter..

Going back to PIP..I actually applied last year (sept if i recall correctly)...i had NO idea of how to fill in the sheet etc..Didnt even consider C Advice..for some reason! i think i thought "theyll easily see how i am and see the facts"

I ended up with 0 points...it was shocking!

They even lied concerning times of attacks/shutdowns etc....3-4 a week major intense and constant baseline pain with multiple stabbing symptoms from the Trigeminal..turning into 3-7hr + attacks.

They stated "As you have only 1 attack.flare up per week. We have awarded you zero points" paraphrase.

I was beyond angry and call them and stated i wanted the mandatory to take effect...i told them on the phone they had 'lied'
The shock become unbelievable shock,when the mandatory came back zero!....and"as you only have 2 attacks/flare ups a week.,..blah blah blah!..
How can 2 people change 3-4 intense attacks...multiple daily flare ups etc etc..

I knew then, ANY other time i ever deal with them again...i'll have to find witnesses.....CA help me fill in forms and someone to come with me to face 2 face.

Chloe_Alumni

Hi @Hartley and welcome to the community! Sorry to hear about the machine breaking, and the fact you had already got train tickets!

I hope you don't have to wait long for another appointment!

Hartley

@Chloe_Scope

Thanks for the interest.
Oddly enough 'i may have turned this negative into a positive. As i called the hospital transport team explaining how physically challenging my first app was(june 13th) 50 miles from where i live..
In total truth, i just managed it, but was so fazed, i barely represented myself to the Dr...ie details.Symptoms etc...

I called St Thomas' and they said that can be typical and they realise the challenging aspects of people in pain ect, attending the Hospital.

So, to get to the point...I called today the transport dept,and i qualify for transport. So as soon as i know the next app, i'll hopefully have a lift.

Certainly not abusing the system,but this is the 1st times ive ever had to ask...as im at my worst condition ever...

plus factoring in 50+ mile journey..Hustle and bustle of London.Will be nice to be able to sit back and just relax..

I'll update when this all happens incase people need to know the ins and outs of this service.

Hartley

@April2018mom

Many thanks...Received a call for cancellation due to a machine being broken...they only have one!

It was for quantitative sensory test// They have no idea when it will be fixed..So pretty open ended,have no clue when it will take place.

I get to a stage of advancement and then it derails. This seems to be the nhs sadly these days.

I feel for the nurses& Dr's( as im sure their hand are tied by bureaucracies, lack of money) 1 machine for a London based Hospital catering to heaven knows how many 1000s+++++ of people nationally.

I'll carry on taking the tramadol,gabapentin and smelling next doors marijuana wafting over the wall partition...lol

Not much else i can do

Al the best.?

Chloe_Alumni

This is great news! I really hope that will make the appointment easier @Hartley!

Ails

Hi @Hartley and welcome to the Community. It is nice to meet you. Sorry to hear you have had so much trouble before you even get to your appointment! I hope it goes well for you and you get a new appointment asap. If there is anything we can help you with at all then please just let us know. All the best.

steve51

Hi @Hartley

That’s great to hear ? about your hospital transport.

This will make a massive difference for you.

It’s a real shame to hear ? about the broken machine.

Yes I worked for the NHS for over 10yrs & it definitely opened my “eyes”

Going to C/A will also make a big difference as they will know the way around the form’s.

It will be a good idea to have someone with you at your next appointment.

Maybe getting the appointment “recorded” will be another good idea.

Please please let me know if there’s any help/support with things?????

@steve51