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11 points daily living am I reading too into this? 1 month 2 weeks ago #251053

This is exactly the kind of thing that baffles the hell out of me. If Paul needs supervision and assistance then that seems to imply he can do it with some help - unless "assistance" means doing the entire meal for him, but then surely that means he can't do it at all?

As a CFS sufferer myself I know all too well the routine of only being able do some basic heating of food on better days, stick a ready meal in the oven or maybe do some toast or boil some eggs, and on bad days either eat nothing or just snack on some pastries etc. or open a tin and eat it cold straight out of the tin. I wouldn't say that counts as being able to prepare and cook your own proper meal with fresh ingredients.
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11 points daily living am I reading too into this? 1 month 2 weeks ago #251054

Gordon wrote:

paul wrote: Their answer was supervision and assistance (4 points) just summary but all answers whereas in-depth.


Given how the Descriptors are written, if you scored for supervision and assistance then this would seem a good result for this activity.

Gordon


But I don't even do the activity at all for all reasons stated. Wouldn't that be virtually unable to do the task?

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11 points daily living am I reading too into this? 1 month 2 weeks ago #251058

Hi paul

You need to assume when writing that the person reading it has no knowledge of you or the impact of your condition. People often say 'the assessor should know ' - but they might not know anything - so you need to explain always making sure that you are covering the criteria that are laid down. So look at each question carefully and answer it as well as you can. You may think you have already mentioned something - but if something applies to question 3 and the same applies for question 10 - repeat it! Getting assessors to understand the impact of pain - whatever the specific condition is always a challenge - so you need to be as clear as you can.

Gary
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11 points daily living am I reading too into this? 1 month 2 weeks ago #251066

Paul

Just to add to what Gary has said.

The highest level Descriptor for each activity is intended to only be met by those with the most significant levels of disability. I'm not saying that someone with ME/CFS could not meet this criteria but I would expect them to be bed bound 24x7.

Take the Descriptor for Preparing Food

"Cannot prepare and cook food"

Note the change from "a simple meal" to "food", it is also accepted that whilst you need to be able to prepare AND cook a simple meal for this Descriptor if you can do either then you will not score. Whilst I stress this is not the criteria, if you can make toast then I would not expect you to score.

Gordon
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11 points daily living am I reading too into this? 1 month 1 week ago #251092

Erik wrote: This is exactly the kind of thing that baffles the hell out of me. If Paul needs supervision and assistance then that seems to imply he can do it with some help - unless "assistance" means doing the entire meal for him, but then surely that means he can't do it at all?

As a CFS sufferer myself I know all too well the routine of only being able do some basic heating of food on better days, stick a ready meal in the oven or maybe do some toast or boil some eggs, and on bad days either eat nothing or just snack on some pastries etc. or open a tin and eat it cold straight out of the tin. I wouldn't say that counts as being able to prepare and cook your own proper meal with fresh ingredients.

My point exactly. Honestly, it feels like disability discrimination and probably a different battle with even health professional denying the condition exists and their biases.
And I also acknowledge the condition affects everyone differently as I've been unable to work or study 10 years + but I was on phone with bank advisor who suffers from it and the conversation diverted from my query to living with fibro/cfs/me so the question asking how your condition affects you sounds reasonable on paper but feels really sucky when divulging the information then again orally and then they turn back to give you a 0.

Gary wrote: Hi paul

You need to assume when writing that the person reading it has no knowledge of you or the impact of your condition. People often say 'the assessor should know ' - but they might not know anything - so you need to explain always making sure that you are covering the criteria that are laid down. So look at each question carefully and answer it as well as you can. You may think you have already mentioned something - but if something applies to question 3 and the same applies for question 10 - repeat it! Getting assessors to understand the impact of pain - whatever the specific condition is always a challenge - so you need to be as clear as you can.

Gary

This is exactly been my approach, I can post the exact answer I've given to show how much detail I go into to avoid this confusion. This including how the task/question affects my pain/exhaustion/mental health/how often/help from others and aids/typical day/medication effect etc

Gordan wrote: Paul

Just to add to what Gary has said.

The highest level Descriptor for each activity is intended to only be met by those with the most significant levels of disability. I'm not saying that someone with ME/CFS could not meet this criteria but I would expect them to be bed bound 24x7.

Take the Descriptor for Preparing Food

"Cannot prepare and cook food"

Note the change from "a simple meal" to "food", it is also accepted that whilst you need to be able to prepare AND cook a simple meal for this Descriptor if you can do either then you will not score. Whilst I stress this is not the criteria, if you can make toast then I would not expect you to score.

Gordon

I get completely where you're coming from and in the past answer the questions in that way. But with the help friends and the pip guide;

It’s vital that, before you complete your form, you understand that just because you can carry out an
activity, that doesn’t mean you are prevented from scoring points for being unable to do it

Some of the questions leave no room for conditions such as this which is made worse when there nothing in between you need help and you can't do it at all. While I'm not completely bedbound I'm in excruciating pain where I'm predominantly bedbound which is yes I can move to go toilet and eat but not without even more pain and discomfort that forces me back to bed which is the majority of the time. I think if there were more descriptors maybe between 4-8 or even another 4 that was hey I can't do this activity majority of the time that it's a problem.

My biggest issue is that I'm 1 point from higher rate which could simply be fulfilled with the one point from medication which does apply to me hence why I felt it was deliberate.

Do I just ask for the one point or do I show how I could score more points in every other question quote things like "reliably" "safely" "reasonable amount of time" etc?

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11 points daily living am I reading too into this? 1 month 1 week ago #251093

Hi Paul

I would never try and fight for a single point - because if they don't give it to you, you're stuck with waiting for an appeal. So try and fight for the specific points where you feel you were underscored and see how you get on.

BIS
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