Monaghan & Shepherd meeting DWP and assessment companies

[Kitty]

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.

I agree that many people will be scored this way on various descriptors, but in some cases it's open to a challenge.

For instance, if a combination of DWP guidance and caselaw shows that X can be regarded as an aid; and the claimant can show evidence that they need to use, and are using, that aid for more than 50% of the time; then it can't legally be refused.

They will frequently try refusing it as an opening gambit, because that'll put people off. They make it stressful to challenge the refusal, which will put people off. But ultimately, because the refusal has no legal basis, those who can access the advice to help them push it through do often succeed at tribunal.

If the process risks a significant decline in your health, then of course it simply isn't worth it. Arguably, though, that makes it important for those who can tolerate it to do so. There have been plenty of cases where tribunal rulings have permanently changed the way decisions are made, to the benefit of the rest of us.

For the record, my HCP didn't ask about my system for managing meds, or to see evidence of my aids (other than the powerchair I was sitting in), even though it was a home assessment. She just gave me the points for them anyway. I was lucky this time...I probably won't be next time.

 

[Diluted-biscuit]

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.)

Unfortunately it’s not that easy. Getting points for anything to do with cognitive problems with ME/CFS does appear to be much harder than getting points for physical problems, even if you use reminders or tell them you have to have assistance. Simply knowing what actually qualifies as assistance, prompting etc and describing it in detail with help from an advisor isn’t always enough.

Getting help is vital and does help but it doesn’t overcome the issues with the system. Particularly with the face to face assessments.

With all due respect, you’ve been lucky with your assessments so far.

 

[Simbindi]

I have severe M.E., but this is not the reason I was awarded points in these cognitive areas. I was fortunately able to make use of my formal dyslexia/dyspraxia/Irlen Syndrome Ed Psych reports and, in my last PIP assessment, my autism report.

Even with these reports, the severe cognitive, working memory and 'executive function' problems I have were under scored (although the text of the HP's PIP assessment report does describe them accurately - go figure...). This is the reason I subsequently had a formal NHS assessment of my ADHD, even though I have been too unwell since to follow this up with trialling medication (this would require 2 hours in a car each way to the hospital).

I really feel for people with M.E. who can't draw on these sort of co-morbid conditions to get the support they need.

 

[Simbindi]

I think there is a major misunderstanding within medicine around the issue of 'having insight' verses having significant cognitive and executive function problems. This is also a problem for many so called 'high functioning' [sic] autistic people seeking support.

It is perfectly possible to have good insight into ones condition(s) whilst having severe memory, cognitive and executive function problems. I wish the M.E. charities would emphasise this in their advocacy.

 

[Simbindi]

I think most of the 'Health Professionals' used by the assessment companies are nurses or physios now. That's not a comment based on stats, just my limited experience.

Yes, the ATOS workbook is specifically written for these types of health professionals, not doctors.

 

[Diluted-biscuit]

I think there is a major misunderstanding within medicine around the issue of 'having insight' verses having significant cognitive and executive function problems. This is also a problem for many so called 'high functional' [sic] autistic people seeking support.

It is perfectly possible to have good insight into ones condition(s) whilst having severe memory, cognitive and executive function problems. I wish the M.E. charities would emphasise this in their advocacy.

Mine just constantly referred to me not being seen by a memory clinic so therefore my cognition must be fine.

 

[ladycatlover]

I think most of the 'Health Professionals' used by the assessment companies are nurses or physios now. That's not a comment based on stats, just my limited experience.

I got an Occupational Therapist. Who blatantly lied.

 

[Simbindi]

Mine just constantly referred to me not being seen by a memory clinic so therefore my cognition must be fine.

Yes, again, they do not understand that memory clinics are for people who have dementia type problems (who lack - even if variably - 'insight' and will eventually show evidence of long-term memory problems), not for those with 'executive function', working memory and/or short-term memory problems. I am fortunate because my Ed Psych reports seperates these aspects of cognitive ability and gives evidence of my difficulties with them etc.

For many people IQ correlates with their overall cognitive ability, so most health professionals and doctors assume this is always the case, judging the patient's mental capacity on this basis. However, those with specific cognitive/executive function difficulties will show a 'spiky profile' of ability on the range of (IQ) tests used in a detailed Ed Psych assessment.

In my case these combined tests show 'an uninterpretable IQ' (even without the M.E.). I assume this would be similar for people with medical conditions that lead them to have similar cognitive/memory difficulties.

 

[Diluted-biscuit]

Yes, again, they do not understand that memory clinics are for people who have dementia type problems (who lack - even if variably - 'insight' and will eventually show evidence of long-term memory problems), not for those with 'executive function', working memory and/or short-term memory problems. I am fortunate because my Ed Psych reports seperates these aspects of cognitive ability and gives evidence of my difficulties with them etc.

For many people IQ correlates with their overall cognitive ability, so most health professionals and doctors assume this is always the case, judging the patient's mental capacity on this basis. However, those with specific cognitive/executive function difficulties will show a 'spiky profile' of ability on the range of (IQ) tests used in a detailed Ed Psych test.

In my case these combined tests show 'an uninterpretable IQ' (even without the M.E.). I assume this would be similar for people with medical conditions that lead them to have similar cognitive/memory difficulties.

Ah yes, they also love to refer to showing intelligence as if that has any bearing on cognitive dysfunction in any way whatsoever. One even tried to use that i had gotten some school qualifications decades ago to say I had no cognitive dysfunction. That one was upheld by a tribunal too.

Edited to add - by upheld I mean my tribunal failed.

 

[JemPD]

I'm glad you had a good experience @Kitty & I hope you will again. Every error on my assessors report is ripe for challenge, but even with support I am nowhere near well enough to challenge it.

I think there is a major misunderstanding within medicine around the issue of 'having insight' verses having significant cognitive and executive function problems. This is also a problem for many so called 'high functional' [sic] autistic people seeking support.

It is perfectly possible to have good insight into ones condition(s) whilst having severe memory, cognitive and executive function problems. I wish the M.E. charities would emphasise this in their advocacy.

Ah yes, they also love to refer to showing intelligence as if that has any bearing on cognitive dysfunction in any way whatsoever. One even tried to use that i had gotten some school qualifications decades ago to say I had no cognitive dysfunction. That one was upheld by a tribunal too.

Yes they cant seem to grasp that you can be intelligent, show insight & still not know whether you have eaten that day or not, not know if, when you're holding your packet of tablets, whether you're holding them because you have just taken one... or need to take one. I once took 3x 850g metformin in 30mins because I was just so confused

I got an Occupational Therapist. Who blatantly lied.

yes me too. told 2 total lies. I believed that if i had my specialist nurse (for another condition) present the assessor would be less likely to tell porkies.... clearly i was wrong. It's shocking.

 

[JemPD]

That one was upheld by a tribunal too.

when you say it was upheld do you mean your challenge was upheld or that they upheld the assessors error?

 

[Simbindi]

Yes they cant seem to grasp that you can be intelligent, show insight & still not know whether you have eaten that day or not, not know if, when you're holding your packet of tablets, whether you're holding them because you have just taken one... or need to take one. I once took 3x 850g metformin in 30mins because I was just so confused

My pharmacy won't pack my Tramadol into the dossette cartridges they use for all my tablets, although they will do this with my other pain killers. Even though I continually risk over-dosing for the very reason you have cited! It's crazy.

 

[Simbindi]

I'm glad you had a good experience @Kitty & I hope you will again. Every error on my assessors report is ripe for challenge, but even with support I am nowhere near well enough to challenge it.





Yes they cant seem to grasp that you can be intelligent, show insight & still not know whether you have eaten that day or not, not know if, when you're holding your packet of tablets, whether you're holding them because you have just taken one... or need to take one. I once took 3x 850g metformin in 30mins because I was just so confused

yes me too. told 2 total lies. I believed that if i had my specialist nurse (for another condition) present the assessor would be less likely to tell porkies.... clearly i was wrong. It's shocking.

I think it has got to the stage where it is worth the claimant secretly recording the assessment on a smart phone, given it is not illegal in the UK and covert recordings can be accepted as evidence in our courts. It's probably relatively easy to do this if you have a companion with you.

 

[Diluted-biscuit]

when you say it was upheld do you mean your challenge was upheld or that they upheld the assessors error?

They upheld the error, I’ll amend my post to be clearer.

 

[Diluted-biscuit]

I think it has got to the stage where it is worth the claimant secretly recording the assessment on a smart phone, given it is not illegal in the UK and covert recordings can be accepted as evidence in our courts. It's probably relatively easy to do this if you have a companion with you.

Better to officially record them if you can. They will supply the equipment for ESA but you have to provide your own for PIP. That can just be 2 portable cassette recorders though.

 

[JemPD]

@Simbindi I agree about the recordings, but regardless of the evidence you have, regardless of the fact you will very likely win an appeal, the process of mandatory reconsideration & appeal is gruelling & depends on how emotionally not just physically robust you are as to whether you can do it.

 

[Simbindi]

Better to officially record them if you can. They will supply the equipment for ESA but you have to provide your own for PIP. That can just be 2 portable cassette recorders though.

I don't think they will supply the recording equipment if you have a home assessment. Also, I'm pretty sure it has to be the official dual recording equipment (i.e. a specialist single machine that can make two simultaneous recordings on tape or CD - the type used by the police).

 

[Simbindi]

@Simbindi I agree about the recordings, but regardless of the evidence you have, regardless of the fact you will very likely win an appeal, the process of mandatory reconsideration & appeal is gruelling & depends on how emotionally not just physically robust you are as to whether you can do it.

Agreed! That's why the charities need to get much more rigorous in advocating for us on this.

 

[Diluted-biscuit]

I don't think they will supply the recording equipment if you have a home assessment. Also, I'm pretty sure it has to be the official dual recording equipment (i.e. a specialist single machine that can make two simultaneous recordings on tape or CD - the type used by the police).

They have no legal requirement to provide recording equipment at all for ESA but it makes no difference if it’s a home visit or in a centre. That being said they generally will provide the equipment if asked. You can provide your own too if they say the equipment is not available.

The DWP will accept 2 identical cassette recorders for PIP, I’ve done it myself and I’ve seen dozens of others do the same. The only issue is the sound quality from them can be appalling, even with external microphones.

 

[Simbindi]

They have no legal requirement to provide recording equipment at all for ESA but it makes no difference if it’s a home visit or in a centre. That being said they generally will provide the equipment if asked. You can provide your own too if they say the equipment is not available.

The DWP will accept 2 identical cassette recorders for PIP, I’ve done it myself and I’ve seen dozens of others do the same. The only issue is the sound quality from them can be appalling, even with external microphones.

They must have relaxed their interpretation of 'identical' then, since the only way it is possible to acheive this in two copies is for a single device to make a dual recording with a single microphone. However, it is good if the DWP are being flexible in this now.

The downside to using amateur equipment is that I doubt whether any tribunal would agree to listen to an unclear recording. Maybe just knowing they are being recorded would make the HP be more honest in their report - but who knows!