Monaghan & Shepherd meeting DWP and assessment companies

Thanks to them for trying to improve things.

 

The guidance currently used by Maximus can be viewed by scrolling down and following the links at:

https://www.whatdotheyknow.com/request/ebm_lima_and_any_other_guideline

It is notable that Maximus used the 'allowable exemptions' to redact the case studies in the CFS/ME guide!

 

It always puzzles me that Capita, Maximum and ATOS all seem to have their own criteria for ME/CFS assessments. Surely the DWP should be setting out how they should be assessing people?

I’m not confident the guidelines would be any better but at least it wouldn’t be a postcode lottery.

 

The DWP does publish the generic guidelines, e.g. :

https://www.gov.uk/government/publi...essment-handbook-for-healthcare-professionals

I suspect the contracted providers only create their own guidelines for the most common and what they consider to be the most complex to assess conditions or where the condition is 'controversial'. The conditions for which claimants are most likely to appeal if their claim is denied and for which they (the assessors) need to have demonstrated some consistency of approach.

For example, as far as I am aware, their isn't even specific guidance for assessing someone with autism. My assessor's ignorance is clearly reflected in the statements and points awarded in my medical report for PIP, where my autism is relevant to the individual 'functional' items being rated. I just didn't need to appeal the report's inaccuracy and internal contradictions as overall I received many more points than needed for the enhanced rate on both care and mobility elements.

The truth is any benefit claim is a complete lottery regardless of one's postcode! So much depends on the individual assessor and probably how many claimants have been awarded each rate in their department that week.

 

many thanks to them for trying to help.

Does anyone know where to find the guidance that Capita use?

 

I don't know about Capita, however I came across the 2016 ATOS CFS/ME workbook that had been scanned and put on the internet by an ex-assessor (who quickly became disillusioned when working for Atos).

I tried to upload it here (I don't have the link anymore) but have got a message saying the file is too big. I can email it if anyone particularly wants a copy if they PM with an email address to send it to (unless there is a way around the document size limit on the forum that someone can tell me about).

 

I also wonder if they pick their battles. If your application shows how well you know and understand the descriptors, and you can demonstrate clearly how you meet them, you're also more likely to be able to challenge an adverse decision.

I don't know whether or not this is true, but I spent much of my professional life drafting funding applications, so if there's one thing I do well, it's filling in forms...and thus far, none of my applications have been turned down. There's bound to be a first time, of course, but I'll appeal it all the way to the last gasp!

 

Having just re-read this workbook, it is evident that ATOS do not consider cognitive problems as part of 'CFS/ME'.

The guide specifies that points should only be awarded under these descriptors if the claimant reports 'having cognitive difficulties in addition to their CFS/ME'. Maybe something for the NICE guideline to specifically address?

Mild ME would be scored as zero points in all areas according to the workbook!

Edit: Meant to quote the following from the MEA's notes on their last meeting with the assessment companies:

'Cognitive dysfunction (i.e. problems with memory, concentration, attention span, information processing) can be a very disabling aspect of ME/CFS. However, most people find that they are awarded low or no points for descriptor tasks that involve some form of assessment of cognitive function.'

 

I’m grateful I had Fightback4justice to help with my form. Haven’t had the results yet but the assessor seemed to have a handle on my issues.

 

It depends on whether it meets specific descriptors, I guess. I don't think the descriptors are a useful way of assessing disability, but they are what we're stuck with at the moment.

For instance, I have to use a device to help with my medication, as I've previously taken overdoses of tramadol due to my foggy brain having forgotten that I'd already taken the tablets. This applies for more than 50% of the time (actually all the time), so it meets the Managing Therapy descriptor. A friend has the pharmacy place her multiple meds into a Dosette box and sets an alarm on her phone to remind her to take them, as otherwise she wouldn't always remember – which again qualifies her for a point under that descriptor.

People with mild/moderate ME may qualify for some points under several Daily Living categories, which could add up to an award. The trouble is that not everyone realises the things they have to do to get by actually qualify as 'assistance', 'prompting', etc. This is why it's well worth using a welfare rights advisor such as Fightback, Benefits & Work, etc – they can advise whether strategies would genuinely qualify, and equally importantly, whether they don't. (Some unfortunate people are using 'advice' pushed at them on social media that's so poor it leaves them open to being charged with benefit fraud.)

 

I agree it's vital to fill in the form specifically referencing one's difficulties. However, from the MEA and the amount of appeals of people with ME, there is clearly a problem.

The training of the 'Health Professional' via these workbooks has primed them to believe (as the workbook specifically states) that CFS/ME does not in itself cause cognitive problems. So if you don't have another 'condition' the HP may well believe you are exaggerating your problems.

I am just stating what is in the workbook, not giving my opinion or advice.

Edit: Based on the scoring recommended in the workbook a claimant would likely get many more points if they stated they also had depression and/or anxiety as a result of their ME.

 

I have same problem, explained it clearly in the form, & at the assessment, even showed him the organiser box I have to use. Still said I didn't need any assistance/aid/appliance & scored 0 points for it.

In my experience it matters less whether your difficulties actually meet specific descriptors, as it does whether the assessor believes that they do..... if they are not told that significant cognitive problems/impairment can be present in ME/CFS then it's irrelevant what you say, and indeed what your doctor might say in his letter either, because if (as far as they're concerned) the condition you have doesn't cause those difficulties, then you don't have them unless you have medical evidence of another condition which can cause them.

Most important seems to be whether the difficulty can be observed at the time. So if you can understand the purpose of the assessment, what your conditions are & how they affect you, then they simply cannot believe you have any cognitive issues.
If the difficulties are ones they would expect you to have with 'X' condition, then they just want to find out how severe & how often, but if they don't expect you to have that difficulty and it's not obviously present at the moment they see you then in their eyes you cant have it, it just wont 'compute' for them.

Which I suppose is reasonable from their pov - I mean if an amputee said they couldn't read because of their leg amputation that wouldn't really wash.
So it's the fault of the stupid guidelines, and behind that the fault of the ridiculous 'ME=being tired' nonsense that is out there.

When the so called experts say the only cognitive issues for PwME are 'poor concentration' then I don't know how the assessors are supposed to do an accurate job. As much as I am angry, it's not really their fault if they are taught wrongly, in the same way it's not really the average overworked GP's fault if the training they've been given & the articles they read from the sources they respect, are 80% pure bullshit.

 

also cognitive problems are under the 'mental health' as opposed to the physical section on the ESA which skews the perception of the illness.

 

Just my opinion, based on experience, mine and others.

They are still using a low hanging fruit method to disallow or reduce ill/disabled peoples entitlement.

Knowingly.

The suggestion that their guidance is wrong, whilst it is, is no excuse.

The majority of 'HCP's just don't seem to care, they just seem to want to meet 'targets' that are officially denied to exist.

They do not appear to have any interest in producing a fair assessment, and a significant interest in not doing so.

The system is set up to prevent those who want to give a fair assessment from doing so.

There is a reason that the assessment companies find it very difficult to recruit doctors, why they do not have enough to meet the requirements of their contracts.

Most doctors are too 'ethical' to participate once they understand the system.

And if you knew my opinion on doctors that's saying a lot.

 

Are you entirely sure that it is not that the contractual terms are unattractive to a doctor?

 

For a lot of the last 2 decades I have been unsure as to my name........

All I 'know' is that before ESA they had no difficulty in recruiting doctors, the repeated 'tightening' of the guidance and policies are likely to be the most substantive change in that process.

 

My family persuaded me to apply for benefits, for which i have not yet forgiven them.