Ladycatlover has suggested I post the gist of my email to the MP:
Dear Laura
I understand you are interested in the experiences of persons claiming PIP. My wife (who may also contact you herself if she has the strength to do so) has suffered with ME for 25 years and used to receive DLA. Because she was a few weeks younger than the cutoff age she was obliged to apply for PIP.
The process - from filling in the form, to the assessment, requesting a copy of the ATOS report, writing to our MP to point out the outrageous errors in the report, to the request for Mandatory Reconsideration (a meaningless rubber-stamp of the ATOS report) to the Tribunal hearing (which awarded Maggie the higher rate of PIP for both mobility and daily living) - took well over a year, and (until the Tribunal finding) was an appalling waste of Maggie's energy and the taxpayers' money.
I find it unbelievably stupid that the contracts with ATOS and CAPITA do not appear to have any penalties if they get too many decisions wrong, and that the DWP Reconsideration (in our case) ignored the concerns we raised and invented reasons to support the original ATOS decision.
In case you have time to look at specific instances of what is going wrong, I am appending the text of my witness statement which was part of the bundle Maggie submitted to the Tribunal.
I attended the PIP assessment with my wife .
When we received notice of the assessment, my first thought was how to get to and from the location with the least possible unnecessary expenditure of Maggie’s limited energy. I phoned to make sure there was wheelchair access and that we could park nearby, so we decided that I would drive Maggie there. These are the usual precautions we take when we go out. We arrived about ten minutes early. I assembled the wheelchair and helped Maggie get into it. There was no ramp so I went to the front door to enquire. One of the staff came out and positioned a temporary ramp which enabled me to wheel Maggie into the building (while this was happening another wheelchair user arrived).
I would like to bring to the attention of the Tribunal some instances where what I have observed is at variance with what has been reported in the DWP bundle.
“She has a driving licence but she does not drive and has not for last 12 years” HCPs report, (DWP bundle page 46). “You stated that you are able to drive but have not driven for some time” PIP Award letter,(DWP bundle pages 75,76).
This gives the misleading impression that Maggie is able to drive but chooses not to. When Maggie first became ill in 1992 she still felt competent to drive on most days, and the DVLA and insurance were content to let her decide when she was or was not fit enough to do so. It has been at least 12 years since we can remember her feeling fit enough to drive safely.
“She reports she has stamina” HCPs report (DWP bundle page 45).
In her PIP application Maggie states “I have no stamina”. This is the most disabling and distressing symptom of her illness. Questioned at the assessment, Maggie said “I have no stamina”.
The HCP records “MSO undertaken while sitting in her wheelchair” (DWP bundle page 50) and “MSO was unremarkable except she declined to forward flex and did not bend and squat as she was in her wheelchair” (DWP bundle page 51). As I recall it, Maggie did not decline to forward flex; the HCP said “I won’t ask you to do this as it would cause you pain”.
“She . . . can walk to the garden path 5 metres” HCPs report (DWP bundle page 45).
This does not accurately reflect what I recall being said. The HCP asked Maggie “How far can you walk?” As I remember it, Maggie replied “The furthest I can walk is 10 metres, that is 5 metres to the end of the front garden and then back again, after which I have to sit down and rest”.
Our car is usually parked on the front drive so only a couple of metres from the porch. When Maggie needs to go out and we are using a taxi, Maggie has to walk the 5 metre length of the front path to reach the pavement, then another couple of metres to get into the cab. When we return she has to walk from the taxi to the chair in the front porch. When she has rested she then has to get up the stairs to the bedroom. By this time she is usually exhausted and often has to sit down on the stairs and go up backwards one tread at a time. When we do this, Maggie pays a price for this exertion as all her symptoms are much worse for several days afterwards. For this reason, she only undertakes this on special occasions, once a month or less on average.
Most of this was not brought out at the assessment, but everything that was said has been summarised as “She can walk to the garden path 5 metres”.
“Coped well at interview. Normal manner, not anxious, agitated or tense” HCPs report (DWP bundle p50).
At one point, the HCP asked Maggie, “what is it about your condition which you find most upsetting?”. Maggie replied something like “The worst thing is not being able to cope with my grandchildren. They are too ‘bouncy’ for me. They never knew me before I was ill and they don’t see me as a real person” . At this point she broke down and wept, then apologised to the HCP for crying. The response of the HCP was “You are not the first claimant to cry in front of me and you won’t be the last.” In the HCPs report on Maggie’s Mental State (DWP bundle p50) she states “Coped well at interview. Normal manner, not anxious, agitated or tense”. My recollection is that Maggie was anxious and tense for at least a week before the interview, but that was the only point where she became agitated. In her Informal Observations (DWP bundle page 50) the HCP notes “She became emotional discussing her grandchildren stating she felt she was unable to cope with them due to her conditions”.
“It has been confirmed in the GP FME that her bad days are 1-2 days per week which is not the majority of the time” ATOS supplementary advice note to DWP dated 23/11/2016 (DWP bundle page 103).
In her application, Maggie gave her GP and her counsellor as medical referees. These are the only medical professionals she has ongoing contact with; her referrals to other specialists (infectious diseases, neurologist) were back in the 1990s. We were surprised that ATOS did not initially request any input from Maggie’s referees. This only happened after Maggie had requested the Mandatory Reconsideration. In their other supplementary advice note to the DWP, dated 27/10/2016 (DWP bundle page 91), ATOS state: “Thank you for your request for advice. All of the available information has been read and considered and there is insufficient evidence to advise of any changes. I have requested FE from this lady’s GP and counsellor in order to provide sufficient evidence. Please task back through once this has been received” (DWP bundle page 91).
In the Mandatory Reconsideration report, the DWP state (DWP bundle p109) “Upon receipt of your medical evidence I sought further medical advice from the Health professional. They confirmed that the GP letter received referred to your bad days as 1-2 days a week, which is not the majority of the time . . . ” Neither the ATOS advisor or the DWP decision maker seem to have read the GP letter with due attention. The level of impairment which Maggie describes in her PIP application is what she suffers even on her “good” days. Her GP notes “There are some days (1-2 / 7) when she is unable to get out of bed” (except to go to the bathroom). These are the worst days. Maggie does not have any days per week when she can move freely around the house, fend for herself, drive the car, or walk up to 10 metres reliably, safely and repeatedly.
“. . . you said your medication is effective . . .” Mandatory Reconsideration Notice (DWP bundle page 110).
What medication? There is no medication proven to be effective for CFS/ME and Maggie is not prescribed any treatment for her CFS/ME. When she filled in the PIP form she was taking a folic acid supplement, and a vitamin D supplement (to combat a low level of vitamin D, not, as the HCP wrongly recorded, “for bone protection”) (DWP bundle page 46). At the time of the assessment, the vitamin D prescription had run out but because it was recommended by Maggie’s GP we had continued to buy it until we could get to see the GP again. Maggie took her folic acid tablets to the assessment and showed them to the HCP. In the Mandatory Reconsideration Notice (DWP bundle page 110) this is stated as “you are not prescribed any dietary supplements”.
“You have told us that you disagree with the decision as you used to get a higher level of award of DLA and feel you should get a higher level of award for PIP” Mandatory Reconsideration Notice (DWP bundle page 110).
Maggie is well aware that the rules for PIP are different from the rules for DLA. In her request for Mandatory Reconsideration Maggie refers throughout to the rules for PIP. In the brief biographical note which she included at the start of her request for Reconsideration (DWP bundle page 82) Maggie stated the fact that she is transferring from DLA to PIP, but did not, either here or anywhere else, argue that because she had DLA Mobility at the higher level she “feels she should” be awarded higher rate PIP for Mobility. I have searched through the entire bundle and cannot find anything to support this hostile invention by the decision maker.
“You said during the day you become more fatigued and and you can not understand or respond to complex verbal information. At the assessment it was noted that you heard without difficulties and communicated clearly with the assessor.” Reconsideration notice (DWP bundle page 109).
It seems that at the Reconsideration it was not noticed that the assessment took place between 9 and 10am, although Maggie had pointed this out in her request for Reconsideration (DWP bundle page 86).
During the last 25 years I have seen Maggie fighting to keep her job, fighting to find some other meaningful activity to replace her job, searching for answers and counselling other sufferers, fighting to remain as fit and mobile as possible, and fighting a gradually losing battle with her medical condition. You wouldn’t guess this from the HPs report.
