Introduction

Everyday living
1

Hi all

Im Simon, I was formally diagnosed with RRMS in July 2017 after a long and convoluted journey. I had multiple symptoms and it was all affecting me to such a degree that I couldn’t do my job anymore. Long story short, I applied for ESA, I’m still technically employed by my company (although they seem to have abandoned me, don’t respond and haven’t actually contacted me since I told them the diagnosis 6 months ago).

I have a work capability assessment on Tuesday and have to admit I’m a little concerned about it. I’m probably not alone in that as I’ve read a few of the posts on here concerning Pip assessments etc. I guess all I can do is turn up, try to explain how the condition affects me on a daily basis and what triggers a flare up of symptoms. I have supporting letters etc from Addenbrookes, my consultant and the MS team. It might sound crazy but I’ve actually come off my medication for this assessment just because I don’t want to appear too “normal” when I’m not. I fully understand the need for assessments as there are so many abusing the system. I used to work within welfare to work many moons ago so saw it on a daily basis. It just seems daft that you can have a diagnosed condition that by the governments new rules means that you won’t ever have to go for a reassessment but have to go and be assessed by someone who will have little understanding of the condition but is paid a bonus to get people off benefits. I had a phone call off the job centre yesterday, another process driven, box ticking exercise and an invitation to a meeting on Monday. When I told him I was still technically employed and the only barrier I have to work is my health condition he promptly cancelled the meeting and agreed it was a waste of time.

anyhoooooo, to summarise my rambling, hello, other than taking someone with me, understanding that I’m going to be under scrutiny for the whole time I’m there. Trying to fill in the blanks for them so they don’t have to guess and then asking for a copy of the report, anyone care to share their experiences and results?

I’m hoping I’m just overthinking it all but I’m just a born cynic!

Thanks

Si

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hi simon

it would be wonderful if i could say not to worry but this government like to give us relapses with all this stress.

if at all possible, get help from somewhere.

benefits and work (online) used to be the best but i don’t know now.

let your ms nurse know how you feel and good luck.

what is the medication that you have come off. asking because my DMD (tecfidera) doesn’t have any visible benefits, just the long term protection.

carole x

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Hi Simon, I found the Citizens’ Advice Bureau to be very good. They seem to know how to word everything correctly. Moira

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Hi Simon

I’m sorry you have to go to an assessment, but I have to say that you’ve contradicted yourself a few times in your post. (I’m not being especially critical of you here, just the process!)

You have said that when working at Welfare to Work, you saw ‘many abusing the system … on a daily basis’. First of all, how do you know they were abusing the system. You’ve suggested that whoever assesses you will have little understanding of your condition. So how did you know people were abusing the system?

It could in fact be said that by stopping your medication in order to not ‘appear too “normal”’, that you are yourself at the very least changing the ‘normality’ of your everyday life for the assessment. I’m not suggesting that you are abusing the system, but you must admit that you are doing everything you can to sway the judgement of the person assessing you.

I am of the opinion that the system under which we are trying to demonstrate our eligibility is deeply flawed. The problem is that the starting standpoint for many physical assessors is that they are looking for points to knock off the assessment rather than points they can add on.

However, the people who do the one to one assessments are not the same people who make the decisions about exactly how many points we score. And (different benefit I know, but …) the assessor for my PIP assessment actually phoned me to work out how many points I should get for one of the descriptors. She thought I should qualify for more points than I’d thought I was demonstrating on the claim form.

So it seems to me that by the DWP trying to cut costs and contracting out the assessment phase, they have made it more unwieldy and less reliable. Partly because it’s a two stage process, person one makes a judgement about your physical condition who then sends a report to person two who makes the decision.

And meanwhile, we feel the need to visibly demonstrate our physical infirmity at the one to one assessment, either through not taking drugs that we actually need, or by ‘acting like it’s the worst day’, or taking every single piece of mobility equipment at our disposal, or using whatever other means we have to show that it’s real.

I wish you well at your assessment Simon.

Sue

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Hi so and welcome

All the best for the assessment. I know that there are many rumours about bonuses etc but please be assured there are no bonuses for not giving awards. It’s all about following the rules laid down. I’m not saying that the rules are good ones.

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Hi Carole

I’ve been offered the full spectrum of meds but have chosen a “middle ground” one (copaxone) to start with working on the theory that if it has no effect then I can always step things up but if I start at the top then there’s no way of knowing whether I could have got away with something with fewer side effects. My plan isn’t working though as I get nausea for at least 12 hours after injecting and have had the head rush, palpitations and flushing a couple of times lol

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Hi Sue

The comments I made are more a case of paraphrasing otherwise my post would have read like ‘War and Peace’ and would have detracted from the point. You’re right, maybe it does seem a little contradictory that I’m critical of a person that can see me once for a limited period of time and help to make a decision that is going to have a major impact on me.

During my time in welfare to work a person would have needed to be unemployed for a minimum of 2 years before they could be referred to me. Often, they were people who had never worked and who came from families that hadn’t worked for generations. I lived in the same town as most of them so it was either massive coincidence that whenever I saw them out of the office they would be able to give Usain Bolt a run for his money but whenever I’d see them in the office they had more paraphernalia than the local A&E. Yes, I’m exaggerating and trying to keep my reply lighthearted but you’ll just have to trust me when I say I wasn’t being judgmental, I’d give everyone 100% of my efforts but without stereotyping too much, these were people who knew exactly how to work the system.

Also, I’ll take your point about my meds. The point is, the meds don’t remove my daily symptoms they’re just designed to reduce the number of relapses. My last relapse hospitalized me for 5 days and caused total paralysis down my right side. That nerve damage is permanent and I can feel it ( or not as the case may be) every day. The meds also cause their own side effects. Given that I MS affects me every single day, I don’t call it good days and bad days as they’re all ‘bad’ days by virtue of the fact that its changed my life but it’s just the degree that changes. I took a door down today, a little bit of DIY. I spent the next 6 hours in the foetal position, numb on my right side and partially blind in my right eye. Rightly or wrongly I made the decision to come off my meds for the assessment. I want them to see what I live with on a daily basis because the information that they record is going to go towards a decision that’s going to have a massive impact on my future.

Believe me, I spent 12 years in the military doing stupid things in stupid places and having to admit now that I struggle with simple tasks is completely alien to me and the toughest thing I’ve ever had to deal with.

What will be will be though

Si

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Hi Moira

My local CAB said and I quote “oh you could apply for PIP but I doubt you’ll get anything because you look ok to me”!

In the words of the late, great Frankie Howerd “my ghast has never been more flabbered”

Bless him, the rest of the interview went well…

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There is something about your posts that ‘doesn’t’ work. Do you have multiple health issues ? We are here to support. But something is not right ?

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Not entirely sure what you feel “doesn’t work”?

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i understood your original post chukka it’s a fact that you will feel stressed and stress makes our physical symptoms a whole lot worse. copaxone was my first DMD and like tecfidera didn’t make much visible difference to me. gather your wits about you and do your best. i was awarded the lowest rate of PIP moving from the highest rate for DLA. my motability car had to go. i was encouraged to appeal by a lady i met at a group physio session. my appeal was rejected and the same lady urged me to fight it. i had to go to tribunal but at the last minute i rang the lady to say that i couldn’t take the stress and didn’t want to go. she suggested that i request for the tribunal to see my paperwork only. they reinstated the higher rate for PIP with back pay. it really is worth fighting for what you are entitled.

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Hi again Carole

thank you for your input,

Si

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Hi Si

Understood. No question from me that the face to face assessments are pretty nonsensical given that the person will only see you for a short time and have to make certain judgements about you during that time.

Going off drugs that help with symptoms I can understand (I don’t necessarily agree with it) but going off your DMD seems a) drastic, and b) unlikely to make a difference to you during the assessment. Unless that is, you are trying to provoke a rebound relapse. Which in my opinion is downright foolish. Yes, the assessor may see you during a relapse, but that relapse could happen after the assessment thus defeating the object of doing it. Plus, a relapse can do serious damage.

I understand that you’ve had relapses before, even bad relapses, but some relapses can do severe lifelong damage. Are you really willing to risk that on the chance that the assessor might see you during a relapse?

I truly hope your assessment goes well, but for gods sake, take your DMDs? (I’m really not judging you or being negative here, just sensible!)

If only the ba*tards at the DWP knew what the stress of these assessments do to people.

Sue.

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Thought I’d give an update. I attended my WCA, I didn’t feel the need to have it recorded, in hindsight I probably should have. At least I had a ‘witness’ though so hopefully that will count for something should I need it. As you probably know, you can request a copy of the report, mine arrived yesterday and there are some glaring anomalies, contradictions and errors. If it wasn’t so important I’d probably be laughing about it.

The day itself was all handled professionally, got sent to the second floor so after the journey in and climbing the stairs my MS was protesting. Had to sign in, it took me several attempts to pick up the pen and my handwriting looked like it had been done by a 3yr old with a crayon. According to the report though it was fine… we were then sent back down to the ground floor because apparently this was, unknown to them, where the doctor was.

Sat and waited to be called, my head was swimming by this stage, I’d lost all feeling in my right arm and the nystagmus in my right eye was saying hello. On the way to the assessment room I had to be guided by my partner and due to my permanent balance issues, I walked into the door frame. Incidentally, this happened on the way out as well but apparently " I navigated my way to the assessment room without any problems ".

It was noted on examination the noticeable lack of strength and motor function on my right side and that I was unable to open or close my right hand. Funny that in the report it states that I can carry a 4 pint container of milk… in my RIGHT hand!

I had to move several times, at least 4 times whilst in the seat yet the report states I sat there for the full 74 minutes. It also mentions that I was able to sit up without assistance on the examination table, well with 12 years as a soldier a former personal trainer and bodybuilding instructor yes, I still have some core strength. The report mentions a “slight” balance issue, I virtually fell on top of the doctor at one stage!

The longer it went on, the worse my speech got, stumbling over words, delayed responses because I couldn’t get my words out and a slurring when I did. This is recorded as my speech being fine with normal tone and responses!!! As I say, thank God I had a witness to it all.

I understand that the WCA is only a part of the decision and that the ESA50 form plus all supporting specialist medical notes are also considered but I have a feeling I’m going to be in for a bit of a battle.

I’ll add further updates as we go along, I’m trying to keep my sense of humour!

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Good Luck Fella

Good that you are already noting the inaccuracies in the report and are ready for a bit of a battle if needed. My wife’s report was a shocking work of fiction or complete professional incompetency from the Health care professional? who knows.i don’t know if they get bonuses but its probably better hours than shift work as a nurse in nhs and ultimately if they don’t fail enough people to save the government money there is more chance of losing that cushy job?

As predictable and expected the decision was not reversed at mandatory appeal stage.

Long wait of about a year for tribunal which we then won.I think something like 70% challenged at tribunal are successful.

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Further update. Just received a text message from DWP to say that I will be receiving a phone call within the next 2hrs to discuss my WCA. They do love to keep you wondering don’t they…

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Update. As anticipated and based on yesterday’s conversation with the DWP, the decision has been made and it seems that my completed ESA 50 form and the pile of documentation from Addenbrookes, neurological consultants and MS specialists they’ve just rubber stamped the error strewn report from my work capability assessment and told me I didn’t score enough points.

I’d say I’m surprised but I’m really not although it did make me laugh when she said that I wasn’t fit to return to work yet due to how my condition affects me! I pointed out that she had just contradicted the report but soon realised I was wasting my breath. She did suggest that “in order to keep my claim current I should immediately apply for JSA”. Again, I questioned that but was told it was correct. Faced with the option of doing that while I go through the mandatory reconsideration process and having zero income I had a look.

I immediately realised that the information I’d been given by the DWP themselves was incorrect as I fall at the first hurdle (literally) by virtue of the fact that I have a long term illness / disability and that I have received ESA within the last calendar month. This is without taking into account that I’m still employed just not being paid and unable to return due to my medical condition.

I phoned the local job centre for some advice and was told that no, I cannot apply for JSA for all the reasons mentioned and that there is no benefit that I can claim while I go through reconsideration. So, I have no income and I guess will be living on fresh air for a while. He did suggest I put in a claim for PIP but when I pointed out that my work capability assessment has basically suggested that I should be competing in the current Olympics how on earth would I get PIP if the criteria is so similar to ESA. “You’ll just have to try and survive with no income then” was the wonderfully helpful response.

Next step then will be mandatory reconsideration, when they get around to actually sending me the verdict that is. As ever, I try to maintain my sense of humour despite the fact that my frustration and stress levels are rising and my patience for dealing with robotic incompetence is dropping.

It has taken me 24hrs to string that little update together as my brain isn’t playing

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Si

I’m sorry it’s worked out this way. Today’s benefits system is so difficult to navigate through and to demonstrate exactly how our MS manifests and exactly how we meet the ridiculous descriptors for the various benefits is simply a mammoth task.

As you say, the next step is Mandatory Reconsideration. May I suggest, if you haven’t already, that you join https://www.benefitsandwork.co.uk/ Their members only guides are excellent, and even for those people who understand the benefits system, are an invaluable resource.

I wish you the very best of luck with the Reconsideration. Hopefully they will rectify their decision.

Meanwhile, I recommend getting more evidence to support your claim. If you see any health professionals from whom you don’t already have supporting documentation, try and get some now. And read through the evidence you supplied with your claim with a critical eye. If anything could be improved upon, ask the writer to rephrase their letter. You can provide further evidence to support your claim upon Reconsideration, which may mean you avoid having to appeal.

Sue

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Hi Sue

thank you for your reply and suggestions. Ironically the official verdict from the DWP arrived today. It clearly states that the decision was made based solely on the work capability assessment as “Mr Spear did not return his ESA50”. That’ll be the same ESA50 that was sent first class recorded delivery and included all my supporting evidence from Addenbrookes, Opticians, DVLA etc etc and were on the desk of the “health care professional” during my assessment. I even asked her if she needed copies of further appointments that were due but she said no, she had all my supporting evidence and appointments don’t really add any weight to the case.

to say then that they don’t have my ESA50 is just a blatant lie. I’ve never encountered incompetence like this in my entire life. In any other professional business they’d be soon getting a P45!

onwards and upwards though. As soon as I can find a couple of brain cells that want to do their jobs I’ll begin my mandatory reconsideration. I’ll try and hold back on the sarcasm though and attempt to keep it professional. It’s hard enough without poking them with sticks

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It’s extraordinarily difficult to avoid poking them with sticks. But you have to try. Leave it a couple of days till you can muster the energy to pretend they are as clever as you.

My top tip is to act as though everything they ask, and everything they say/write is perfectly reasonable. To write as if ‘we’re all on the same side’ and that all I’m doing is to try to explain exactly what life is like for me. Ie to work with them to get the ‘right’ answer.

Sue

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