How can I fight MS when I'm fighting the system??

Sorry guys, but I need to vent. I applied for PIP last October. I was turned down after almost 7 months of waiting for a response. On asking for a copy of the Atos report I could fully understand why! There was so many errors in it, and outright lies, it could have been written about somebody else! (Apparently one of my hobbies is dancing. I walk with two sticks and rely on a wheelchair a lot of the time!!) When I got my follow up phone call I explained this and an application was made for a reconsideration. I’m STILL waiting for a response! I’ve spent a fortune on phone calls and I’ve written to my (very lovely and extremely helpful… never thought I’d be saying that!) MP several times. I’m not sleeping and I’m in a permanent state of anxiety. Atos told my MP on 5th JUNE that they had provided the DWP with an additional report and advice due to new evidence received from my MS nurse. I spoke to the DWP last Wednesday and they tell me they never received the above. Some woman has tried to phone me twice from DWP to update me, but on both occasions I have not been here to answer the phone. Can I call her back? Can I heck! And apparently they only try you a couple of times and then they won’t call again. I’ve asked them to PLEASE get her to try again, They have put the request through but cannot tell me when it will be, so basically I will now have to avoid leaving the house indefinitely until she calls again!! During that phone call (yesterday) they also advised me that they had received a supplementary report from Atos that day (I contacted my MP the day before to inform him it hadn’t been sent… coincidence?? I think not!) but that it has nothing on it. What does that even mean??? They also told me they have referred it BACK TO ATOS to query it!! Apparently the DWP “HAVE” to go through Atos. Evidently they’re not capable of making a sensible decision based on the information they have been provided by my senior MS nurse who knows me and my illness inside out. They’d rather take the word of someone who doesn’t know me from Adam, spent 30 minutes chatting to me (no physical examination) and typing my answers, only to then completely twist them into a travesty of the truth! Sorry everyone. Feel like I’m losing my mind over this xx

Kaz X

Would have suggested you go speak to MP, but you have already done this, sometimes you feel as if you are hitting your head off a brick wall. I have been wqaiting for 10 months for a NHS nurologist, Doctor said I probably know what is available and what works for me, in other words waste of time seeing Neurologist

take care

PS what about your local press

Hi Kaz

I was going to suggest the same - the press. But I would say - go large!! Or contact BBC’s Watchdog programme. You can’t be the only one having the same problem. They probably have a huge dossier about ATOS and can you imagine Anne Robinson grilling one of ATOS’ senior executives?! That would make for good TV …

Tracey xx

Thanks guys :slight_smile: I’m saving the press as a last resort as I really don’t want to put myself out there! But if things don’t resolve soon I feel I will have little choice. I contacted my MP again this morning. He really has been very supportive, trouble is he seems to be getting robbed off as much as I am! Kaz xxx

Just to let you know, Kaz, I Tweeted your forum post this lunctime- it’s struck a chord.

MS Society UK @mssocietyuk
‘From our forum: ‘How can I fight MS when I’m fighting the system??’ #ATOS #PIP #DWP #MS


This is making my blood boil just reading it. I’m not at the stage of applying for benefits yet but when I am I just know it’s going to be a nightmare. Definitely one for bbc watchdog. Good luck!

Just want to let you know that I am grrr-ing for you hun.

Its really frustrating, particularly that you cant call the woman back. How can you ever leave the house again…chuffin` rediculous!

luv Pollx

Oh god, the prospect of getting help now? Reading this, I have been getting help from DLA low level as self employed and was managing to do the odd job, but since may I can’t walk so can’t work, was wondering if I could get more help, ESA. Mabe but can I get that as well as the DLA?? Or will it be deducted and will they start again, and I will loose all help for months, the saying goes your better having your health than money, but that’s B------ks if your ill, stress is really bad for MSers??? What chance we got, good luck.

i believe that ATOS have bought themselves out of the contract to do the PIP assesments as they are having so much trouble with it but dont know when from and who will take over from them.

Thank you all for your support, it is much appreciated. And thank you for tweeting Stewart. I know I’m definitely not alone in this. Just a shame its the current claimants at the mercy of this dreadful system who will end up being the guinea pigs that (hopefully) lessons will be learned from for the future! Kaz xxx

Hi ATOS have bought themselves out of the work capability assessments and not the PIP assessments. They did this in march and not sure that they changed this since. Sorry to hear of your problems. Neil

where is the M.S. Society in all this ?


i’m furious on your behalf.

so furious i’m going to need a brandy to calm me down!

please update us on what happens next.

carole x

Thank you all :slight_smile: xxx I have resorted to the brandy myself once or twice, Carole :wink: x Zetland, I don’t know that there’s anything the MS Society could do. I’m.certainly not alone in my experience x

Hi Kaz I went through ESA last year and was lied to time and again by ATOS. I am pleased they have left that part of the system and perhaps they need to leave this too! Like you, trying to talk to the person dealing with my case was impossible and I would be told that they would phone me, but they didn’t, write to me, but they didn’t, and be finished by date x, but they weren’t. It was very stressful! What I have learned from all of this is that the system didn’t work. They said I could work, even though I have full ill health retirement. They changed their minds, as if it were news to them despite all the supporting letters etc. My approach to PIP when it comes? Fill in forms. Don’t expect them back when they say. Expect it to be wrong. Expect to have to challenge it. Try to remain stress free with a genuine smile on my face! Genuinely hope that the system gives you the right decision and soon. Andy

Hi Andy. That’s definitely the way to approach it. It’s so wrong that wehave to battle like this for something we’re entitled to. I don’t know how Atos staff sleep at night! I don’t care if they’re given quotas to meet or commissions to achieve. I would walk out of any job that required me to put fellow human beings through so much stress and anxiety x

As Zetland asked what the MS Society is doing, er this:

And er, this:

And this:

And this:

And our head of Policy & Campaigns wrote this:

And if you want to help us fight, and want to stay informed, please join our Campaigns Community:

Also, help us to campaign, shout louder & deliver the hard stats to slap 'em with. DO the Big Benefits Survey 2014:


All I can suggest is to contact fightback4justice look them up on Facebook they have helped many with this and appeals mine didn’t go bad but I only got standard rates and a nice report. Good luck x

Thanks Alysea, I’ll look them up. And thank you Stewart, I have some reading to do :wink: xx

Thumbs up Stewart. Kaz-x been sat by the phone 3/4 hour still sat here like plumb duff as I write awaiting ESA to pick up after they cut me off at 2.30 as they were shutting up shop for an hour,and someone would ring me back…but dint! Think it’s a farce but also would hate to think what their work load is like! Keep plugging away at them I have ended up in a mess from not appealing the year before last after seeing ATOS. Best wishes x Michelle x