Written evidence from Name Withheld (PEA0118)

In answer to your questions.

In short no.

My own experience of PIP and ESA and those of other claimants shows this is unlikely. There must currently be incentives for assessors to record findings inaccurately, breaking professional codes of conduct. The DWP it would appear does not quality control assessments accuracy in reporting, or taking account of written evidence from those who treat and care for claimants. Few assessors ever contact claimants GPs.

The current WCA is not fit for purpose, i.e it bears no relationship to the ability of a claimant to work. It takes no account of a person’s ability to get up, washed and dressed or the time taken to do so in order to even contemplate work or even the means of getting there. Outside of London accessible transport is a complete joke. Even many large towns and cities have only a handful of wheelchair accessible taxis, making reliable travel impossible. Few employers would accept somebody turning up late on a daily basis because of not being allowed on numerous buses, that’s even if they can get to a bus stop. The fact it can take many disabled people several hours just to do a simple task of getting up, washed, dressed, having something to eat, carrying out bowel care that in itself may take a couple of hours.

Individual’s experiences of PIP assessment and Mandatory reconsideration.

I had a home assessment for PIP. I was receiving DLA at the highest level for both mobility and care last assessed in 2013 and an indefinite award given. My original award was in 1995

The PIP nurse assessor phoned to say she was coming 2 hours before the stated time, meaning I could not have an independent witness present. I therefore accidentally set my iPhone to record so I had an accurate record. The nurse was polite at the assessment, but following the outcome and obtaining a copy of her report I was astounded. I was awarded the lower rate of PIP for both mobility and care.

I accept the award is very different to DLA. With the help of my MP I did get this overturned at Mandatory reconsideration, to higher rate for both, but only for 30 months. Though some scores were altered some just met the higher rates, others were left that were very wrong.The decision maker stated I had sent new evidence. I only sent photos of my twisted scared spine, shower control that my hands cannot use unaided and aids that the assessor saw, and another copy of a statement by my former GP stating my walking distance was less than 10 metres on the 2013 DLA form. I could not get further evidence from my new GP, I moved to a different part of the UK 18 months earlier, and my GP records still had not arrived! But DWP had not contacted him for any evidence, and GPs where I now live will not supply a letter unless asked by the DWP. I was a day away from having to return my Motability car when I received the mandatory reassessment decision, which was speeded up by my MP involvement. The stress caused by knowing I could not cope without the car, i.e. virtually housebound, and means to pay for help needed, led to depression. The short new award means I am in danger of losing my new Motability car which needed a down payment of £2500, in order to get one I could cope with my impairments and carry my wheelchair, after 2 years. My mobility is not likely to improve, it has only got worse since 1994 when I initially developed spinal problems. I cannot undo the damage which has continued resulting in severe neuropathic leg pain, bladder and bowel dysfunction further spinal degeneration, plus the continuing effects of arthritis on top. Interestingly I got a letter about ESA just after the MR decision. I gather if it had not been successful I would have faced another WCA, because they believed the ATOS PIP assessment. I accepted the MR with its short length simply because of the stress if I had taken it further to a tribunal though in hind sight this would probably led to a better long term outcome so that all the points were looked at. Being reaccessed again in 2 years is just as stressful, now knowing the lengths the PIP assessors go to to mark you down and ridiculous assumptions made about the ability to carry out tasks ( see below). They are laughable if it was not a serious matter.

ATOS nurse assessment report Jan 2017

Much of what I said was recorded incorrectly. The reasons she gave when awarding the points made huge false assumptions (see below). These appear to be taken from templates of answers with much cutting and pasting, being very similar regardless of activity, giving very misleading information to the decision maker at the DWP over my degree of pain and level of pain medication and function to carry out simple tasks. She failed to apply reliably, repeatedly or safely to any of the tasks. She stated that a physical examination had been done, but I did not move from my chair, so she could not examine my spine which she stated was normal, nor get an accurate range of limb and joint movements. The latter were given in degrees on the report, No measurements were taken. Even a physiotherapist would struggle to give this degree of accuracy without using a measuring device.

She missed out large parts of my History of Conditions, getting dates mixed up and important facts missed out such as bilateral foot drop. Even though she did record pain here she has carefully forgot to mention the extent  of it later on, or the high level of opiate based controlled drug I take to take the edge off it, nor related side effects to it.  She also fails to mention the NSAiDs or paracetamol. She states on the first page that the further medical evidence that I supplied with my PIP questionnaire was not used within the report including information from a pain management consultant in the year before I moved, and letters from consultants at a specialist London hospital whom I have been under since 2004.

Under Social and Occupational History she carefully mentions, ramp access to the house and rail, wheeled walker, grabber, elbow crutches, outdoor rollator, long handled shoe shoes (sic) adapted bath but no mention of the wheelchair that was by the front door.

Later she mentions the wheelchair that generally I use when out by myself, making it even lighter than it is. No wheelchair is that weight even those like mine costing £5000.

She correctly records that I can move around less than 10 metres using crutches but adds comfortably which I did not state, I am always in severe pain walking.  She stated that I park as close as I can to avoid walking, but apart from the odd post box a couple of times a month, I use my wheelchair anywhere away from home, 10 metres does not get me anywhere and this includes many falls and stumbles and any walking brings on extra severe calf pain.

She stated I was “well kempt” (sic). I had not managed to wash my hair for over a  week due to my impairments, and she failed to notice I was only wearing 2 items of clothing, and was spaced out on my prescription  controlled drug.  Answering the door was obviously counted against me, and although I used 2 elbow crutches she stated I only had one, an (impossible) normal gait, and that I used grabbers to pick items off the floor (a dropped sheet of paper) She stated my history was clear and concise, but half of it is wrong or missing when checked against the illegal recording I made simply to have an accurate record.

Scoring of assessment by ATOS nurse.

1 Preparing food.

“Despite reporting that they require assistance this is not consistent with observations where they were able to handle aids at consultation (I had put some in my rollator basket ready to show her, not use, & stated some did not help) despite MSO showing reduced power, pinch and fist grip to both upper limbs. More over there is no use of significant input or medication (sic)

However, the reported difficulties of pain when preparing food are consistent with their condition history, physical restrictions would be expected. Indeed MSO highlights reduced spine bend with observations showing she walked slowly. Therefore they require the use of aids to manage this activity reliably”

I was awarded 2 points but cannot reliably and repeatably or safely carry it out.

I am not sure what type of medication she thinks tramadol and NSAIDs are. I regularly drop pans, mugs boiling hot, knives, cannot use many aids due to severe pain. The tramadol means I forget about pans cooking so burn things, so have to rely on ready meals that I also frequently drop if no help is available.

2 Taking Nutrition

Can take Nutrition unaided.

“Despite reporting difficulties with grip this is not consistent with observations where they were able to use aids   at consultation, such as grabbers and crutches. Indeed there is no significant medication or input to specialist services”

I have had to use special cutlery for 15 years due to arthritic symptoms in my hands advised to do so by an OT, and have been on the highest dose of NSAIDs. Additional I have had limited jaw opening which is being investigated by an oral surgeon. I can only open my jaw 22 mm so to eat food has to be cut up very small or it gets stuck.  I need the help of another person or an electric chopper as it is too painful to cut food up.

0 points

3 Managing Therapy or a Health Condition.

A , no points

“Despite reporting poor memory this was not supported by their condition history where they do not report any cognitive or mental health impairments. Furthermore they have demonstrated adequate grip by using aids such as grabbers.indeed they where able to offer a clear and concise condition history at consultation.”

I only claimed very short term memory problems related to the side effects of tramadol along with its significant effect on concentration which often leads to accidental mistakes in taking drugs twice.

I have huge difficulty getting tablets out of packets. The device I have sends most to the floor. But the main difficulty is opening suppositories needed for bowel management. The packaging just breaks when I try to get them out. I did show the assessor the consequences. Grabbers are no use at opening these or squeezing special bottles of saline needed for bladder wash outs or the alternative of a bladder syringe, separate saline and a sterile jug. I only manage to successfully carry it out 10 % of the time without help allowing mucus to build up in my bladder due to having a piece of bowel added to it. This mucus then blocks the catheters needed to empty my bladder and increased UTI’s

4Washing and bathing

She stated b that I need an aid or appliance

but I can  no longer  reliably, repeatedly or safely carry out this task even with aids. I can not turn the normal shower control above the bath, and the the special bath is no longer suitable, I have fallen and slipped many times and usually too stiff even to attempt getting in, never mind get out. Most days I wash using baby wipes when I do not have help.

“Despite reporting that they require help this is not supported by observations where they have demonstrated adequate grip to operate grabbers”.(She saw me use a soft handled grabber with sticky pad, and no aid or grabber that I have will turn the shower control)

Further more, they report that they are able to drive a manual car. (I am at a loss how pressing a clutch pedal down helps operate a shower control or get me in or out my special bath safely I have not used a normal bath or shower for 20 years)

However, upon considering condition history, physical restrictions would be expected. Indeed observations show that they walked slowly and required support from the chair upon sitting down. Overall, it would be appropriate to suggest the use of aids”

5 Managing Toilet needs

She put down b for this

“The reported difficulties of needing help due to incontinence is not supported by observations where they have demonstrated adequate grip to operate grabbers

and walking aids. Furthermore there is no significant pain relief medication

The reported difficulties of needing support to sit and stand with the use of pads are consistent with observations where they have been observed to require support of the chair to stand up.Indeed, physical restrictions and problems with bowel and bladder would be expected when considering their condition history Therefore they require aids to manage this activity”.

How walking aids and grabbers help me pick up or insert catheters or clear smeared faecal matter on my backside and clothing is beyond my comprehension. Apart from the large quantities of pain relief I take for neuropathic and arthritic pain, often beyond the recommended dose, I see no relevance to this task. The NICE clinical guideline on faecal incontinence recommends loperamide rather than codeine phosphate as a bunging up agent, which I do use when leaving home, but it can cause other problems, such as poor catheter drainage. Walking aids do not help me clear up spills of urine when catheters leak or when I drop bags full of urine due to poor grip.

6 Dressing and Undressing

Assessor put b

“Despite reporting that they need help to dress this is not supported by observations where they were able to use walking aids, demonstrating adequate grip. Further more, they report that they are able to drive a manual car.

However, upon considering condition history, physical restrictions would be expected. Indeed observations show that they move slowly and required support to sit down. It would be appropriate to suggest the use of aids to manage this activity reliably”

No aid has allowed me to manage socks, tights, trousers, shoes with laces, fine zips or small buttons. I am often too stiff in the mornings to put even clean pants on unaided. I have tried using my walking aids, that have special handles but neither the indoor rollator nor ergonomic handled crutches help, the latter are a hindrance to dressing. How on earth they are supposed to help the fine dexterity needed to dress? Being able to grab a soft adapted handle of walking aids or car steering wheel, or grabber to fasten a bra, pull zips up or fasten small buttons is beyond me. My right distorted foot due to severe long standing foot drop means getting anything other than a slip on shoe, that is socks, tights, or trousers impossible without help It does not bend normally.

9 the ATOS MSE showed I had a normal facial expressions, it is amazing the powers of opiates!  She should try for budgeting decisions in 10 when full of them.

11 She gave me A for planning and following Journey, 0 points

“Despite reporting that they require support to plan and follow any journey (sic) this is not consistent with their condition history where they do not report any mental health impairments. Indeed they report they can drive a manual car. Therefore the can manage this activity reliably and independently”

She reported correctly that when I drive I have no problems with journeys I know. 22 hours a day I am spaced out on tramadol so do not attempt to drive. I get assistance with most other journeys I make, either from train staff,  taxi drivers  friends or relatives.  Tramadol makes me overconfident about my abilities and mis judge distances and speed. Needing to use my wheelchair adds to the problem as drivers do not see me when crossing roads. I have had many near misses, and tumbles out my chair when being overconfident about what I am capable, a few weeks prior to the assessment I had difficulty getting a taxi from a hospital appointment in an area of London I do not know, I got  lost, faced with lack of dropped kerb ended going along a road weaving in and out of parked cars, in the dark in torrential rain. A stranger had to rescue me and hail a taxi. Matters were made worse at Kings Cross when I was told I couldn’t board my booked train because of a broken toilet. I went into panic.  Incidents such as this are not unusual. I have fallen out my chair in front of a tram and been left stranded by no dropped kerbs.  Like most people with long term conditions depression is not unusual and the loss of ability to do normal daily living tasks makes it worse even if we do not freely admit it.

12 Moving Around

She put D stating that I can stand then move 20 -50 metres which she has no evidence of

“Despite reporting that they can walk less than 20 metres this is not supported by observations where they walked with a normal Gait (sic). Indeed there is no significant medication

The reported difficulties of pain are supported by their condition history where physical restrictions would be expected Indeed observations highlight that they walked slowly with a walking aid. Moreover they report that they are able to walk in the garden outside. Overall it is reasonable to suggest that they can move 20 metres but no more than 50metres reliably aided”.

I followed her from the front door to a seat, all of 4 metres using 2 ergonomic elbow crutches. At the end-of the assessment I followed her to the front door bent over a indoor rollator. Although I have a garden and used to like gardening, most is done in small areas, near to a door, crawling not walking with double dose tramadol and NSAIDs, and spend days recovering (I have to employ a gardener to do most tasks). I can not walk without severe pain, stumbling and falling another reason why I crawl. To go round the garden more than a few metres I require a wheelchair. I have not walked 20 metres for about 20 years. It is impossible for me to walk with a normal gait due to bilateral foot drop and my misshapen spine, that tends to lock when even going a few metres walking. My right leg gives way without warning or does not move when I want it to hence the stumbles and falls that the assessor did not take any notice off of the bruises.  I had not been round the garden since the previous summer, over 3 months. How having a garden makes me able to walk is beyond my comprehension. Something carried out irregularly, even the the crawling, is not carrying out the task in a reliably or safe way never mind repeatedly as the test states. I had to stop visiting friends homes as they were not wheelchair accessible and the distances from parking too far or of large spaces inside. Walls and strategically placed furniture often stop my stumbles becoming falls at home. Hence why I always use a wheelchair elsewhere.

October 2017

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