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

I have long term (20 years) M.E. plus a lot of other medical conditions. I do feel the new PIP should work better for me 'in theory' than the old DLA. However, I am highly sceptical about whether this will happen in reality as I think far too many people will qualify if the DWP decision makers actually follow their own guidelines! I used the PIP guide from this site and also the DWP Guide for PIP Assessors when I filled in my form (with 35 pages of additional information...). It should be noted that the DWP guide is clearly riddled with inconsistencies and contradictory advice to the HP (in order to reduce points from claimants) so read it carefully with caution. I put in my application form in December (they had to send me a 2nd form as the 1st never arrived) and I had my face to face assessment with ATOS 10 days ago.

ATOS completely refused to provide me with a home visit even though my M.E. is severe and I live 3 miles from the nearest bus stop (although I can't use public transport anyway but I thought I should meet the criteria for not being able to get to a location in 90 minutes by public transport because of the lack of it).I am also on the waiting list for an Asperger's diagnostic assessment (I had the screening assessment over 6 months ago) and suffer from extreme anxiety and depression. On top of this I also have severe bowel problems that put me at risk of soiling myself (in order to go out I have to starve myself for 24 hours so I have empty bowels). They did agree to authorise me a taxi, but would not pay for it upfront, as per their rules (it would have cost over £70 for a taxi and I am on long term ESA and would never have been able to afford this).

A whole range of issues have come out of my experience, far too much to type here and now (I have just about regained my ability to get out of bed and write since my harrowing assessment). I'm planning on emailing Steve a written statement so he can use my experience to advise others. I am also going to complain to my M.P , Jeremy Browne. The assessment actually took place in a public leisure center which was totally unfit for purpose. It is listed on the ATOS site as being a 'Physiotherapy Center', but actually it is just a basic room that a local 'Physiotherapy Company' rent off a large local sports center. It looked more akin to an office and contained a very low physiotherapy table, a desk and a few chairs. Fortunately I had my daughter drive me to the assessment and a support worker from the Rethink Mental Health charity attended the actual consultation with me. It was clear to me the HP hadn't fully read my form (although she kept claiming she had) and I felt that I was being interrogated throughout as every question she asked me had already been fully answered on my form. She also asked me inappropriate questions about my recent suicidal thoughts, which upset me a great deal. The room used for the assessment was freezing cold, had bright florescent lights and a constant loud buzzing noise. On top of being driven mad by all these environmental difficulties, I was starving hungry and stressed by the personal nature of her questions. All in all, the perfect recipe for an 'autistic meltdown'! After half an hour I was clearly on the verge of a major one, but the HP decided she should stop 'questioning' me at this point and after I refused to do any physical movements (I stated I knew it would exacerbate my M.E. because this is what had happened after my ESA medical, but my limbs were completely numb anyway) the assessment ended. I wasn't worried about the short duration as my form already had the answer to all possible questions, and I had kept repeating this to her throughout every time she asked me something she should have read. Both my support worker and I think she looked on the point of tears herself at this point. At the end of the assessment my mental health support worker asked the HP what experience she had in the field of mental health but she just gave the usual line about being 'fully trained' to deal with mental health assessments as well as the physical side (so clearly no experience at all, except her ATOS 'training'). She absolutely had no idea of how to manage someone on the autistic spectrum (and apart from the M.E. 'brain fog' I am very high functioning, very intelligent and usually not difficult to 'manage' as I tend to internalise, rather than externalise, my anger and frustrations).

Anyway, if anyone wants to ask me questions or receive advice that may help them in their face to face with ATOS I'll try to help. The one positive thing the HP did was to immediately offer me the use of a wheelchair when I asked her how far she was expecting me to walk. It turned out that the assessment room was probably over 30 meters from the foyer where I had to wait for the HP, and the long corridor included well used lockers (meaning people and bags had to be negotiated to get to the room) as well as 2 sets of fire doors. There was no ATOS receptionist to 'welcome' me or to offer any advice as to delays (despite what ATOS have on their wbesite about this) and I had been waiting 15 minutes in the freezing cold with noisy humming sounds pervading the foyer, bright florescent lights and the automatic doors sending constant draughts across my legs before I knew what was happening. The foyer was also being used by members of the public - including parents with excited school children - who were there to use the sports facilities. There were no 'comfortable chairs' - only fold up metal ones, or fixed ones with tables attached.I was cold and stressed and could barely move my limbs even before the assessment. However, the wheelchair offer was an unexpected bonus! My support worker and I concluded the HP must be new and inexperienced to have offered this to me so quickly...

Of course, I may now have to wait months to hear the outcome of my application, but I'll update the forum when I know.

Sarah

I'm sorry to hear that your experience was so bad Sarah! I totally agree with Gordon's comments.

Hi Sarah. Which PIP Assessors guide are you referring to? I read the pertinent sections of this one

www.gov.uk/government/uploads/system/upl...assessment-guide.pdf

And according to it, my case (which is certainly less dramatic than yours and probably less disabling although you can't out a score on these things really can you ) is an open and shut case giving me 60+ points! Knowing exactly how they might attempt to bend the rules here would be most useful.

Ii sounds like you've made your case both well and intelligently so I expect you'll be ok, unless they are particularly determined to ignore the facts, in which case you should win easily on appeal. Good luck!

Hi again. Well, I got put in the WRAG over 2 years ago, with a statement that my condition(s) would be expected to last 'at least 2 years'. I really should have been in the support group but didn't want to appeal as I was just glad I had got the ESA benefit long term (incidentally I submitted my renewal medical form in early June 2013, but still haven't been asked for an assessment medical, nor received any update decision. ATOS do have my completed form - so that's over 8 months they have been sitting on it!). There were many problems in my ESA medical report which basically 'down graded' all of my problems to the score below what I felt was right for me (although I still got more than 15 points because there were lots of 6's and possibly some 9's). When I later put in a claim for DLA (and again I used the guide from this site) I was immediately turned down without even a medical. I should have got at least middle rate DLA and high rate mobility based on what I had written. I can infer that the DWP used my ESA medical as 'evidence' for the DLA application and so denied me my benefit. Under each section they put 'You have difficulties but can manage'. I had made the mistake of writing how I coped in the absence of a carer: I have made sure I haven't done this on my PIP application. I almost certainly would have won on appeal but also knew it would have made my health significantly worse and was having operations planned etc, so decided not to appeal. I also now realise that the Asperger's makes engagement with professionals very difficult for me, so 3 years ago I had very little up to date information about my M.E. on my medical file. This is now much more up to date and I have built a relationship over the last few years with my G.P., which certainly helps me for obtaining 'evidence'.

The link given is the DWP guide I refer to. As I said, it is in point of fact, internally contradictory, although this may not be obvious to the naive reader. When I am well enough I will write to Steve with my comments on this guide (quoting the specific sections), so they can be more widely shared (I am only out of bed for a few hours in the evening at the moment). The main thing is that the HP can use their 'judgement' and 'objective opinion' to disagree with anything you claim! You have a 'perception' of your disability that may not be 'reasonable' to them! The Decision Maker also has license to disagree with the HP, especially if they have not cited 'objective evidence'. So built into the system there is lots of leeway for the DWP to claw back points from unwary, unprepared claimants. Also the clause,' when reasonably required' can be argued. For example, you are only be 'reasonably' required to 'cook and prepare' food at one point in the day and to 'prepare food for eating' at 3 different points in the day. You would have to show why it would be 'reasonable' (or necessary) to do something at the point in the day you can't do it (either by yourself or with help as appropriate to your problems).

I have to sign off to eat something now, but will add some advice specific to M.E. later.

Sarah

Hi. Here's some quick advice about M.E./C.F.S. Firstly, if you feel this is the correct diagnosis for your condition you need to make yourself well informed, because it is probably the only medical diagnosis that is so contentious both within and outside the medical profession. Many doctors still do not believe it is a 'real' illness, and many who do still think there is a large element of 'psychological dysfunction' in the sufferers. This means gaining specialist medical evidence is highly problematic, and often just about whether you are lucky enough to have a good, understanding G.P. The NICE guidelines have been heavily influenced by psychiatrists. I would recommend you read the following document:

www.investinme.org/Documents/Library/magical-medicine.pdf

I'd also recommend you read the full NICE guidelines for M.E./C.F.S. (easily found online by a quick Google search)

The only 'specialist' medical help available is CBT and GET, and this is what will be offered at the 'Specialist M.E./C.F.S. Clinics' that the government has invested in (even though many patients have found their condition worsened by these 'treatments').

During my PIP medical the HP asked whether I was receiving any 'specialist treatment' for the 'C.F.S.' (C.F.S. is a term I disagreed with, as it understates my severe M.E. symptoms). The nearest clinic is over an hour and a half drive away from my home, and I'm basically housebound! The treatment on offer is only suitable for 'mild' C.F.S. and can still make a patient worse (C.F.S. is such a 'catch all' term, it could be covering a whole raft of different undiagnosed or misdiagnosed medical conditions, as well as true M.E.). However, I had actually explored pursuing this option with my doctor over 2 years ago but obviously it was not one I either wanted or could have taken up.

In addition, my local Pain Clinic was no help to me, as all they could offer was group based CBT (yes, this is what they are now offering for 'back pain' and pretty much every other orthopedic, rheumatic and arthritic condition, as well as M.S., Fibromyalgia and M.E./C.F.S).

My Rethink support worker thought I was definitely being asked certain questions to try to 'trip me up' although to me it felt more like the HP just hadn't read my form (she genuinely didn't understand many of my difficulties, even though I had spelled them out on my form: including my experience with the M.E. Clinic).

I'd also recommend you buy, 'Missed Diagnoses: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome' by Byron Hyde MD (available on Amazon).

Hopes this helps a bit, as Gordon said, it is wise to be prepared for the worse (because at least you should have grounds for a good appeal if need be).

Sarah