PIP totally CFS/ME friendly compared to ESA/DLA!!?

Thanks for the reply Sarah.

Let's not get into the complex questions of diagnosis, treatment and the general incompetence/corruption as we're in danger of hijacking the thread entirely. Obviously the NICE guidelines etc are a nonsense full of discredited science and sophistry and any "CFS/ME" sufferer who has some ability to function will be seeking treatment outside the scope of the propaganda machine.

On the original subject of PIP for CFS/ME, I think there are a couple of contentious points in the system which could result in the same application getting full PIP or nothing. I want to get this tightened up for my own application, but also for the benefit of othe CFS/ers; these issues and how to attack then are going to be extremely pertinent for the majority of sufferers and the guides available just don't go deep enough.

This question of how the 24 hour rule is implemented still bothers me.

There are all these conflicting messages about time requirements for any descriptor: "any point during a 24 hour period", "when you would reasonably expect them to do it" and the painkillers example.

It could be argued that preparing a meal is only required once a day so that throws out the 24 hour requirement at a stroke, the same could be said for washing.

In the case of someone who is unable to do anything for the first two hours of the day (common CFS problem) you could argue that eating, dressing, washing etc are unnecessary as they wouldn't be doing anything anyway, and that they "can still carry out the activity when required" later in the day. In this interpretation being MORE disabled results in much LESS points!

So how to attack this? A few ideas:

Quote the DWP document saying "any point in a 24 hour period".

On each descriptor, state why (the point where you can't do it) is a point where you'd be "reasonably expected to do it"

Refer to the "in a reasonable time" clause, adding the required rest time to the activity

Speak of the number of hours in a day that you CAN do the activity as well as vice versa. This number is usually pretty small among CFS'ers as we lose so much time to insomnia, forced resting periods and so on that our day can be as short as 5 hours rather than the 15-18 a healthy person would expect. This is a big part of the disability that is still not really grasped by the PIP rules, as much as they are a huge improvement on ESA.

Draw a table or branching diagram showing the different parts of the day with the likelihood of being capable of each activity in each part. I think this is the best way of giving a layperson a realistic and easily grasped picture of the true nature of the disability. I'm seriously considering doing this, as words just don't get the job done when it comes to this condition.

The other problem is question 13 "Getting out".

It speaks of mental problems like anxiety (ok that fits CFS/ME) but the guidance talks of mental illnesses rather than physical. We know that CFS/ME has components of both but it seem to be shoehorned into physical by the DWP so is it going to be impossible to get points for this question? This would leave us needing to get the full 12 points on the last question ("Moving around") which according to the rules we should (due to at least a period of being unable to move 20 metres reliably each day) but it could be pretty "squeaky bum" to do it that way given how aggressive they could be. I wouldn't be surprised if they tried to use the trip to the assessment or the ESA results (which of course are not comparable as they deny the existence of fluctuation within the day) to falsely invalidate this.

These are my thoughts. Everyone keeps saying "do your best" etc, but I think that it's important to take this more legalistic approach with attention to detail, as it can make it more difficult for assessors to massage the evidence and in the event of an appeal will get right to the nub of it.

Holes

Hi Holes,

Obviously I've already filled in my form and had my assessment, but I did take a very similar approach to the one you have suggested (and this is what I also wanted to put across to others on this thread - don't be naive about how the points system should 'work' for fluctuating conditions, make sure you specify everything and make clear how severely you are affected).

I also have Asperger's (I'm still awaiting my formal diagnosis but am 99% sure I will get the diagnosis when I have completed all the stages of the assessment). This means I am likely to score additional points on my mobility and social difficulties (for example I can't use public transport because of sensory overload, social anxiety, difficulty in dealing with strangers etc, as well as the M.E.). I did get points for 'social difficulties' on my ESA almost 3 years ago, without any specific medical evidence. I think the assessor (a nurse) used the emotional difficulties I had during the assessment itself to justify this on her report (I hadn't mentioned the possibility of Asperger's Syndrome back then, but she did pick up on my 'flat face' (lack of facial expression) in her report.

I also put on my form all the environmental triggers that could cause me to have an autistic 'meltdown' in a face to face assessment. However, the actual assessment was even worse than I was anticipating, because of the cold, noise and waiting in a public foyer. I have no 'social filter' and put this down on my form. I was extremely distressed by the assessment, which had both the environmental and social feel of an 'interrogation' (at least to my brain). So at one point I did ask (in a very distressed state) whether the 'whole purpose of my being here is for you to see if I'm lying?' I didn't notice (because I rarely take in other peoples' facial expressions), but my support worker said the HP went bright red at that question! My support worker also said the HP couldn't get away quick enough once my daughter had arrived to pick me up (and she could take the wheelchair back from me) - she didn't hang around to see how well I managed to walk to the car!

Anyway, I'll update here with the outcome of my assessment when I have the report, and let other M.E./C.F.S. sufferers know where I receive relevant points (or not, as the case may be).

Best of luck to everyone else!

Sarah