The new NICE guidelines - do they affect benefits at all?

[Wonko]

In practice that is not how it works.

Written diagnosis, by particular people, are all that seems to matter, both at assessment and at tribunal.

It should be noted that at no point, ever, has a consultant, or GP handed me a piece of paper saying that I have xxx when they've given me a diagnosis. Never, its not something the NHS do. But failure ot produce said piece of paper means they (the DWP and their agents) say I am a liar.

I still haven't been officially told I have diabetes (and no such diagnosis is in my 'complete' medical notes), despite being prescribed diabetes meds for over a decade, and occasionally attending diabetic reviews, let alone been given a piece of paper saying I am diabetic.

Not having them allows them (the DWP and their agents - which was then backed up by a tribunal) to simply disregard everything pertaining to them, and even worse allows them (DWP, agents, tribunal) to treat my written evidence as lies, which is then used to suggest that literally everything, even stuff that was supported, was lies.

Even were I did have diagnoses in my medical notes, and have told them that these preceded the 2 years of medical records they asked authorisation to get, that practically everything in my records was over a decade old, as I've not been well enough to see my GP, they didn't bother, and then said no medical support for diagnosis, so lying.

So formal, and current diagnoses matter, done by someone the DWP finds acceptable, consultant, minor deity, some bod they dragged in off the street and paid to say 'nuffin wrong with im guvnor'. The system doesn't care about what limitations you have unless these can be backed up by their flawed understanding, and are in a manual written to minimise or remove claimant reported problems.

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[JemPD]

Yes @CRG but my problems are very, very much worse than brain fog. I cannot understand what is being said to me. I cannot understand the written word. I do not know where i live or how to get home if i am out. I do not understand money or how to assess if i have been given the correct change or not - i dont mean i cant remember, i mean that if they ask me for 85p in a shop, i simply have no idea which of the round shiny things in my purse, to give them, i just havent a clue, and dont understand that they're asking me for it even if i did.

These things are relevant for PIP because at my worst, when alone, even if i could physically walk(which i cant but even if i could), i could not understand how to get out of a building following signs. Am unable to ask for help when out & before i accepted that it was unsafe for me, i would struggle out alone & become very ill & these issues have been exploited - i have been robbed etc.

But as far as the NHS page & the DWP are concerned, (and tbh as far as 99% of Drs & HCP are concerned, nobody has those problems due to 'fatigue') so non of that is consistent with a dx of CFS... therefore 'does not have a dx of cog impairment', in their world, is justifiable.

And since, when i'm at my best, i am often 'as sharp as a tac' it's extremely difficult for a person to envisage how bad the impairment can get. It has to be seen to be believed.

 

[CRG]

In practice that is not how it works.

We can only state what the legal position is and hope that anyone dealing with application, appeal etc can make use of it.

At a rough count I've done 22+ applications through Invalidity Benefit(IvB), Incapacity Benefit (IcB), ESA, DLA and PIP, with several appeals, two first tier tribunals and one taken through to the upper tier. So I certainly know how crap and at times positively evil the system can be - and not just to ME/CFS patients, the horror stories are many.

The document issue used not to be such a problem because prior to 1995 GPs would invariably write a letter supporting a claim for IvB, and hospitals would send a copy of all reports to both GP and to the patient immediately following any investigation, consult etc. The introduction of IcB in 1995(?) coincided with collapsing relationship between Govt and GPs, the latter going on a progressive sort of work to rule, also GP commissioning came around that time, a consequence of which was that reports were no longer copied to patients, it being a cost for GPs to carry not the hospitals, and at the same time GPs were allowed to start charging for photocopies of reports so thereafter the patient had to ask for the report, and then pay to see what was being written about them.

It is free for claimants to get all documents relevant to their claim from the DWP - that will include any report the assessors have sought from the claimant's GP, but AFAIK you can only get that after the first decision.

Every patient is entitled to see their health records and GPs are supposed on request, to facilitate patients to have access to their notes - I guess GP will charge for any photocopying and I don't know what limitations there on patients photographing our own records. I would certainly seek copies of all hospital referrals/reports from the GP prior to starting any application for a health related benefit - not withstanding it's a cost that patients shouldn't have to carry. It's always been my practice since the mid 90s to request from the GP copies of hospital reports, immediately following the hospital appointment.

 

[JemPD]

It's always been my practice since the mid 90s to request from the GP copies of hospital reports, immediately following the hospital appointment.

It has been automatic that all consultants reports to GPs were automatically copied to the patients (by post) for some yrs now (i'd guess a little over a decade?), in my area at least. Is that not the same across the NHS? I'd assumed it was as i am under 2 different Trusts

 

[Wonko]

I have no idea, all of my stuff is from years ago and I got none of it sent or given to me.

My medical records that I received recently have lots missing and are not in a helpful format.

My DWP records that I received more recently also have lots missing, for instance they do not have anything used in my last, and ongoing PIP claim, despite the non award letter referencing an assessment report it was not included, let alone any of the numerous communications sent, or any of the communications sent or received regarding my latest ESA award.

These spanned 2 years, so......there omission can only be deliberate.

The system as it is supposed to work is not what happens, even if disabled, and cognitively impaired claimants eventually figure out that they have to do literally everything.

 

[CRG]

Yes @CRG but my problems are very, very much worse than brain fog. I cannot understand what is being said to me. I cannot understand the written word. I do not know where i live or how to get home if i am out. I do not understand money or how to assess if i have been given the correct change or not - i dont mean i cant remember, i mean that if they ask me for 85p in a shop, i simply have no idea which of the round shiny things in my purse, to give them, i just havent a clue, and dont understand that they're asking me for it even if i did.

These things are relevant for PIP because at my worst, when alone, even if i could physically walk(which i cant but even if i could), i could not understand how to get out of a building following signs. Am unable to ask for help when out & before i accepted that it was unsafe for me, i would struggle out alone & become very ill & these issues have been exploited - i have been robbed etc.

But as far as the NHS page & the DWP are concerned, (and tbh as far as 99% of Drs & HCP are concerned, nobody has those problems due to 'fatigue') so non of that is consistent with a dx of CFS... therefore 'does not have a dx of cog impairment', in their world, is justifiable.

And since, when i'm at my best, i am often 'as sharp as a tac' it's extremely difficult for a person to envisage how bad the impairment can get. It has to be seen to be believed.

After more than 30 years I'm still haunted by standing in the front hall of the kid's school on Monday morning, a seven year old and four old on either hand, being asked by someone at a table, with a form, the names of my children. I was completely at a loss, there was just no recall, and though my memory was fried I could see the woman with form was rather disturbed, and sense the kids being agitated by my inability to answer. Thankfully the 7 year old grumpily stepped in gave their names and they both shot off into the milling crowd of their class mates to escape their weirdo parent.

I gave up counting change years ago, but then I often can't pick up coins from a flat surface so I generally avoid cash. I've had plenty of lost my bearings events, especially when dealing with transport, and times of complete vacancy of where I am or why I'm there. I think I just got used to it over time, it's uncomfortable but ultimately manageable; once I no longer had to worry about someone smaller, it generally ceased to be a concern. But that day at the school was truely horrible, it was forgetting the absolutely most important life defining thing. I don't think I was ever quite the same after that.

Of my two most recent encounters with benefit claims -the ESA HCP who did a paper review, was (going by their report) pretty wet and the result not wholly satisfactory, though there was no outright denial of cognitive impairment. With PIP I went prepared with lots of paper explanations of symptoms, including how my speech is messed up a lot of the time, and wrote in depth about the cognitive stuff. This was all accepted by the HCP who was very happy with it all and the outcome the was best I could have hoped for.

 

[Kitty]

despite the non award letter referencing an assessment report it was not included

I'm not sure of this, but do you not ask the assessors for the report? The idea that that DWP couldn't provide it is laughable since they based the decision on it, but something seems to stick in my mind about asking the assessment company for the reports. I've only ever done three assessments (two for DLA, one for PIP), and haven't yet asked for one myself.

I meant to ask for the PIP report in case it was useful to challenge a future adverse decision, but I found the whole process so appalling that I felt as if I couldn't bear to read it. Even though I'd got the award I thought I was entitled to, it would still have been difficult to engage with it. I just wanted to move on from the whole bloody thing!

 

[CRG]

It has been automatic that all consultants reports to GPs were automatically copied to the patients (by post) for some yrs now (i'd guess a little over a decade?), in my area at least. Is that not the same across the NHS? I'd assumed it was as i am under 2 different Trusts

No I've had to request, and pay for copies of everything since at least the early 2000s, and that is across 2 GP practices and 3 hospital trusts.

 

[CRG]

I'm not sure of this, but do you not ask the assessors for the report? The idea that that DWP couldn't provide it is laughable since they based the decision on it, but something seems to stick in my mind about asking the assessment company for the reports. I've only ever done three assessments (two for DLA, one for PIP), and haven't yet asked for one myself.

I meant to ask for the PIP report in case it was useful to challenge a future adverse decision, but I found the whole process so appalling that I felt as if I couldn't bear to read it. Even though I'd got the award I thought I was entitled to, it would still have been difficult to engage with it. I just wanted to move on from the whole bloody thing!

This portal should work but I'm sure there's an address on the claims docs/the online claim pages. https://secure.dwp.gov.uk/personal-information-request/name

 

[Wonko]

I had it (ETA - the PIP assessment report), from the time or the original assessment (2017), and was shocked that, when asked for the reason for the null award, they said they used the same report for my assessment this year, so I asked for all information the DWP held on me.

This took around 2-3 months to get info, in 2 packages, the first being ESA related and then several weeks later one for PIP stuff arrived.

The ESA one was basically just copies of old ESA85s (and it's predecessor) along with a 'sample' DB dump of my claim (mostly being 2 sides of A4 per payment made, over the last 20 years - totally useless info, but they managed to waste a lot of trees). It did not contain anything about my communication issues, vulnerable status, or that all verbal communications have been made by an advocate.

The DLA/PIP one did not contain anything about my 'current' claim, nothing, despite a lot of communication having occurred regarding it. It did have quite a bit of info about my prior claim, hundreds of pages, and some medical records that I had never seen before (despite having my 'complete' medical records according to my GPs surgery), nothing useful, only of note because I hadn't seen it either in my medical records or in the section of medical records which I received as my copy when I appealed, the previous decision.

 

[JemPD]

@meg22 thanks for that further info its helpful

@CRG how awful for you at the school! I wasnt implying that others with ME inc you, didnt have similar issues to myself, only that its a lot more/worse than brain fog, but since brain fog is the only formally docummented issue that we are 'supposed' to have its easy for HCPs to limit accptance of issues to that. Anyway glad yours went ok last time

 

[Wits_End]

This took around 2-3 months to get info, in 2 packages, the first being ESA related and then several weeks later one for PIP stuff arrived.

The ESA one was basically just copies of old ESA85s (and it's predecessor) along with a 'sample' DB dump of my claim (mostly being 2 sides of A4 per payment made, over the last 20 years - totally useless info, but they managed to waste a lot of trees). It did not contain anything about my communication issues, vulnerable status, or that all verbal communications have been made by an advocate.

Yup, sounds pretty similar to our situation: I'm currently going through the 400 pages of printout and filleting out anything that needs to be shredded, which hasn't been a lot so far - just as well, as the paper's too wide for my own shredder, and even using the office shredder I'm having to tear everything in half just to get it in.

Total waste of trees, as you say, but I was told to ask for it under FOI: the only useful - and indeed intriguing - thing to have come out of it, dated several weeks before the PIP tribunal, but arriving sometime after that date, so unusable, was to find out that apparently they'd got someone else to reconsider the application and it had been awarded substantially more points than previously. Yet I was told that (i.e. DWP withholding the results when they'd been ordered to submit the paperwork) wasn't grounds for appealing against the result of the appeal. Having since learned rather more about appeals than I knew at the time, I suspect I could have tossed the words "substantial procedural violation" about a bit and tried appealing, but unfortunately I didn't know that at the time and nobody suggested it

 

[Wits_End]

I'm also wondering whether the new guidelines, in combination with changes to procedures "post-Covid", might also be of benefit? You may recall that my caree was disadvantaged in her PIP appeal because she was unable to travel to the tribunal, being housebound, and she was refused a tribunal by video (or by phone, I think), so was unable to plead her case. Nowadays, I assume that video tribunals have become a way of life due to Covid, and that refusal to provide such a facility would no longer be acceptable.

 

[tornandfrayed]

Like Kitty,
I just can't make myself read through my assessment. I find it too distressing. My PIP decision was both enhanced for 10 years, so I was very happy with that, but I saw that I had no points for "preparing for a journey" which I'd talked a lot about. After seeing that I didn't read any more. I didn't want to know if I'd only scraped through into an enhanced award.

We really have to act like lawyers on our own behalfs, but it's impossible to be dispassionate about being judged in this way.

 

[Invisible Woman]

It should be noted that at no point, ever, has a consultant, or GP handed me a piece of paper saying that I have xxx when they've given me a diagnosis. Never, its not something the NHS do. But failure ot produce said piece of paper means they (the DWP and their agents) say I am a liar.

I have my diagnosis in writing. By both an NHS consultant and also confirmed by a private consultant after the NHS one retired.

Even with that the DWP tried to simply ignore the specialists.

I simply got lucky that my brain decided to work on a day when I really needed it and when I actually managed to speak to a helpful human on the phone.

So, even when you have the information they'll sometimes try to ignore it.

That's the problem with a system that automatically looks to deny or reduce payment to the minimum. It eventually ends up with them trying things to see if they'll get away with it. The worst that will happen (for them) is they'll be made take the information into account.

Of course the consequences for the claimant are much more severe.

 

[Invisible Woman]

I sympathize with your experience @CRG.

. I think I just got used to it over time, it's uncomfortable but ultimately manageable; once I no longer had to worry about someone smaller.
.

I think that's the difference for some of us. It's not just about the severity it's about the manageability.

In the same way some people can't guarantee to physically manage to walk to the bathroom to brush their teeth two days in a row the way PEM affects us means our cognitive abilities are not only very impaired, they're very unpredictable.

As @JemPD says if they disregard these then for those of us impaired in this way, they are ignoring a significant part of the disability. Whatsmore it's a part of the disability that often renders you fairly helpless to defend yourself against such unfairness.

Edited - fix a mess I made using the quote function.

 

[Kitty]

It eventually ends up with them trying things to see if they'll get away with it.

Fightback used to post quite a few stories about claimants being rung up to see if they would accept this or that award (lower than they were entitled to), probably on the basis that some people would be grateful to get any support at all. Completely outrageous, it's not a salary negotiation—the law says that if you score X points, you're entitled to X award.

I think they took a number of them to tribunal, and fortunately the judges weren't having any of it. I seem to recall some cases where the claimant had actually accepted the lower award just to get the whole hideous process over and done with, which was later upgraded to whatever level they qualified for.

 

[Simbindi]

Like Kitty,
I just can't make myself read through my assessment. I find it too distressing. My PIP decision was both enhanced for 10 years, so I was very happy with that, but I saw that I had no points for "preparing for a journey" which I'd talked a lot about. After seeing that I didn't read any more. I didn't want to know if I'd only scraped through into an enhanced award.

We really have to act like lawyers on our own behalfs, but it's impossible to be dispassionate about being judged in this way.

Yes. I scored a lot of points and got the 10 year (indefinite) award for PIP, but it was clear the ATOS manager had made the (I was lucky, lovely) HCP downgrade my points in each section. I could see that because the score given was the one lower than the written descriptions in the report would have tied in with. So bizarre, it's as if they just can't bring themselves to acknowledge that a claimant can be so severely affected by their conditions that they meet the higher scores across the board.

 

[Invisible Woman]

So bizarre, it's as if they just can't bring themselves to acknowledge that a claimant can be so severely affected by their conditions that they meet the higher scores across the board.

It does make you wonder about targets..... if there were an average number.of points per descriptor per claimant and they.needed to keep them down where possible. That's not necessarily the case, though I do believe there are other targets. Just my suspicious mind.

 

[Peter T]

It does make you wonder about targets..... if there were an average number.of points per descriptor per claimant and they.needed to keep them down where possible. That's not necessarily the case, though I do believe there are other targets. Just my suspicious mind.

Wasn’t there some evidence several years ago that the contracted assessor companies were operating a target system to reduce claim levels, though this was denied both by the DWP and the companies involved?