Written evidence from Anne Egan (HAB0047)

Background and history of PIP experience completed by wife and carer of a PIP claimant

As a result of a workplace accident in 2016 my husband was left with permanent brain injuries, residual left sided weakness, vestibular and sensory impairments. Because of his cognitive impairments he was unable to make a claim for any type benefit himself, so I managed and dealt with the whole process of claiming PIP on his behalf. I dealt with DWP, requested claim forms, completed PIP questionnaire, supplied further medical evidence, accompanied him to face to face (f2f) assessments, requested MRs, wrote the appeal submissions, and attended a Tribunal. First application for PIP was in October 2016, receiving zero points throughout the process and it took until December 2017 before he was awarded PIP by Tribunal.

When his award ended in October 2019, I had to re-apply and again DWP gave zero points so throughout 2020 and for second time we awaited a Tribunal date. It was not until December 2020, after endless phone calls to DWP call centre and sending much correspondence over a period of 10 months (which was never dealt with as I know that corresponding work items on DWP system were closed without any action), did I finally get to speak to a DWP Decision Maker. After a 2-hour phone assessment he was awarded PIP. This was an 11th hour award averting the need to go to Tribunal and not before I had challenged DWP on its Diversity and Equality statement.

So, both claims took over a year to resolve despite my doing everything correctly and within timescale as set out by DWP. I completed a comprehensive PIP Questionnaire and supplied extensive further medical evidence at the outset but still had to fight to get proper recognition of my husband’s impairment/disabilities. I can honestly say that my husband is one of the sizeable minority of claimants for whom the whole process (twice) was thwarted with problems, brick walls and incompetency from start to finish. My experience of claiming PIP a second time and the problems I encountered was history repeating itself. I will explain further in my answer to question 1a.

Answers to your questions - all PIP related

1: To improve quality of assessments I believe that DWP need to go back to basics and consult with representatives from different disability organisations as to how best to assess a claimant. Most certainly a brain injury expert should be on any consultation panel when changes are proposed so minimising the risk of issuing forms in which questions focus on physical capabilities and to ensure assessments do not just favour physical and visible disabilities but also consider cognitive and sensory deficits.

During a f2f the HP has PIPAT to work through and free text facility to help complete his report, but this is not helpful for the claimant. The claimant has nothing to follow and at the end of the f2f nothing to confirm and agree to. I suggest a f2f with a set format and for the claimant, reflected on paper in the form of tick boxes so that the claimant would know that all aspects have been covered. And signed by both parties to confirm for example: that appropriate questions have been asked, that informal observations made by HP are true and accurate, that the HP ticks that he has read Questionnaire and has discussed some, all or nothing with the claimant. The most important and contentious issue is further medical evidence and so above all it should be mandatory for the HP to have read regardless of how much evidence or length of time taken to read and then discussed with claimant. It is too easy for the HP to say that it has been viewed in DRS case file and considered but not make any reference to it in reports. IAS do not audit the HPs on this. In my experience of f2f I asked the HP if he had looked at the medical evidence and he replied that he did not.

DWP must independently check the quality of Consultation Reports they receive from IAS. And ensure that they really comply with the standards set out in PIPAG. I realise that DWP Case Managers and Decision Makers have no medical training so are none the wiser when an IAS HP uses ill-defined phrases and says that a claimant showed no sign of psychological distress at consultation so has no cognitive impairments. My experience is that DWP accept anything IAS report, no matter how none-medical, or dare I say again no matter how prejudiced the justification and descriptor choices are. So, I spent weeks corresponding, explaining again and again about my husband’s impairments to no avail because DWP blindly accepted IAS stance of being highly trained Disability Analysts. If IAS came under more scrutiny from DWP it would have to improve its standards/grading and carry out more quality reviews, then I am sure that less cases would go to Tribunal. IAS would be more accountable for the quality of its service.

In my opinion the DWP decision letter is a waste of Decision Makers (DM) time. The DM should not have to interpret and summarise with standard phrases which may be inappropriate in a letter which is really a long-winded way of telling claimants “yes “or “no”. Instead, the Consultation Report should be issued automatically along with a very brief DWP letter advising claimant officially of award or non-award. The same goes for the MR stage as my experience of MR decision letter is that it is just a re-hash of the original decision letter. Sight of the consultation report would mean that claimants would not spend weeks agonising over details of their assessment and perhaps enable them to settle disputes earlier.

Also, not all claimants know that they can ask for a copy of reports or send a SAR to DWP. Making IAS reports more accessible and open to scrutiny by way of compulsory issue should, I hope give IAS the incentive to improve the standards of assessments and produce quality reports in keeping with DWP PIPAG and comply with recommendations of Gray report.

In separate lengthy correspondence I challenged IAS on many issues, quality of reports was one of them. I was advised that 5 lines of comment in which the HP misspelt a very crucial word and made disparaging remarks constituted a report which conforms to standards set out in PIPAG. HPs should be accountable for time spent on reports and writing up, I know that HPs set a timer when opening up PIPAT so time taken to complete the consultation report is noted. However, IAS have confirmed HPs completing MR/supplementary advice do not have to account for the time that they look at evidence or write up their report so in theory can take as little or as much time as they like. My experience is that the HP who supplied supplementary evidence took no time at all and in fact did not look at any evidence.  HPs no matter what their role should be accountable for their time and IAS should audit appropriately.

I can compare the fair, thorough and appropriate assessment of my husband’s impairments by a Tribunal to the assessments carried out by an HP nurse who did not have the time to read, let alone understand the further medical evidence, who asked prescriptive questions and then recorded in PIPAT. The difference being members of Tribunal had the experience and skills to assess a claimant with complex invisible injuries whereas the HP had no awareness or experience of cognitive and sensory motor impairments or indeed in any invisible disability either cognitive or physical. If the HP could not see the disability, then his observations were that my husband has none.

I mentioned my lengthy correspondence with IAS, well I also challenged them on the training HPs go through and at one stage I was advised that IAS does have written guidance for HPs to refer to when assessing claimants with acquired brain injuries. When I asked to see that guidance, I was then told that the Client Relations Manager was mistaken and there is no such guidance. In fact, IAS would not disclose what training HPs undergo. Several times I was told that the HP was a fully qualified Disability Analyst who is trained to a high standard, but I found that the HP was no more competent or skilled than he was 3 years previously.

To improve quality of assessments IAS must improve and extend its training programme for HPs so that they have the appropriate skills to assess functionality in claimants who have cognitive and physical impairments. IAS should consult with representatives from different organisations to increase its awareness and understanding of the effects of various conditions. My husband has permanent cognitive impairments but according to the HP and CRMA his cognition is adequate! because he can drive. Therefore, he can manage every activity and needs no help. Such lack of awareness and appropriate skills causes claimants much distress and leads down the road to disputes and Tribunal.

1a: My answer to this question is long winded and sorry if I repeat myself or go off the point a bit, but I have examples of my PIP experience and how nothing has changed. I have made two new claims for PIP, 3 years apart which were before and after you last reported on PIP in 2018. As I previously intimated the process of claiming a second time almost mirrored the first. Second time round I was familiar with the whole process and requirements. I was armed with up-to-date information/examples, expert medical reports on functionality and (naively) the belief that IAS would look at all the evidence, so could not possibly report back to DWP that yet again, my husband has no impairments/disabilities. The reality of my PIP experience is that not a single part of the process has improved. In fact, I found that IAS as an organisation does not live up to the 5 promises it makes to claimants. I may be mistaken but believe these promises came about because of the Gray Report. The HPs still do not have the appropriate skills to assess a claimant with complex invisible injuries and so still base their justifications for zero points on lazy assumptions, informal observations and prejudiced opinions, particularly about impact and scope of cognitive impairments. This prejudice and lack of understanding goes beyond the HPs to the Client Relations Medical Advisors (CRMA) whom IAS advise me, are senior clinicians and the Clinical Support Lead (CSL) who oversee the on-going quality of reports.

From the start I encountered the exact same DWP delays and computer glitches. After starting the claim with PIP helpline I awaited claim form. After a month I rang again to find out that claim had not been uploaded to PIP system, so form was not sent out. No improvement in IT systems.

Any additional information I gave in PIP Questionnaire 15 was ignored/disregarded so claim automatically referred to IAS for face to face (f2f) assessment.

f2f was at the same ATOS/IAS Consultation Centre, where we sat in the same waiting room and in the same chairs at the back of the room away from other people where it was quiet. And we walked the same distance into the same Consultation room, yet in 2019 that distance had doubled according to observations by the HP as mentioned in the Consultation Report.

The same HP carried out the assessment.

The HP totally disregarded all further medical evidence which was either not listed or referred to in justification for any descriptors.

I have studied DWP guidance for PIP claimants and that for providers and find both consultation reports and both supplementary advices do not comply with PIPAG.

● The HP copied and pasted same wording into each descriptor. For example, “he is able to drive suggesting good cognition” so he can express and understand verbal information unaided. “he is able to drive suggesting that he would not require prompting to manage finances” - so he can manage complex budgeting decisions unaided.

The HP copied and pasted medical history from 2016 report into 2019 report.

● Even though I supplied extensive further medical evidence it was never enough. The HP’s based his justification for descriptors of every activity on observations and prejudiced assumptions about cognition. (Because my husband can drive, he has adequate cognition and good general memory!)

● Both my MR letters in which I gave further explanations of the impact of my husband’s condition were disregarded as they were not medical evidence.

● Both MRs carried out by ATOS/IAS were not proper re-examinations of the facts as per PIPAG, but merely re-iterated what was said in Consultation reports. 5 lines of unjustified comment which took the HP 2 minutes to type up should not be deemed acceptable content and quality by IAS or DWP.

3: Yes, I would change some descriptors for some of the activities as they are heavily geared towards the physical capabilities and do not take into account cognitive deficits. Changing the descriptors themselves would only go some way to facilitate accuracy but I believe the main problem is the interpretation of them by the HPs. My experience is that HPs assess functionality very much on physical and to a certain extent observation because they do not have appropriate skills to assess functionality of a claimant with invisible cognitive, motor and sensory impairments or who suffers from pathological fatigue. To be precise the HP who assessed my husband had absolutely no understanding of brain and vestibular injuries and chose to justify his descriptor choices with observations, assumptions and prejudiced opinions. (I can elaborate and give much evidence on this if needed). 

For example:

Activity 6. Dressing and undressing

None of the descriptors apply to my husband’s impairments as they are weighted towards the physical. The fact that he must sit on the bed to dress because his balance is impaired is not evidence. Plus, because of a combination of cognitive impairment, fatigue and alas, olfactory impairment I must prompt him to shower and change his cloths but none of the descriptors cover this.

Activity 12. Moving around

This is the best example of an activity which is physical and where the choice of descriptor clearly define distance and use of aids. However, it does not stipulate whether indoors, outdoors, situations and circumstances. At times my husband can walk a considerable distance without stopping but it depends on where he walks and whether it is a safe place to walk. He relies on his vision to remain balanced and to walk in a straight line, so any crowded or busy places are literally visual chaos for him, and it is impossible for him to remain stable and walk. Under current descriptors he cannot score any points for this activity.

7: Having experienced a Tribunal in 2017 and awaiting a date in 2020 before DWP stepped in, I can very bluntly answer this question by saying that Tribunals carry out a proper assessment, look and consider all evidence, ask for relevant examples of functionality and basically do the job that ATOS/IAS are contracted to do but in my husband’s case failed to do so.

The Tribunal awarded PIP on the totality of the evidence I provided which was the exact same evidence I submitted to ATOS who said it was not enough or up to date so gave zero points. DWP cannot say that success at Tribunal depends on new or up to date evidence. It is about the quality of assessment.

It is too easy for DWP and IAS to say that further evidence or more up to date evidence is needed and so putting more onus on the claimant. Claimants with permanent impairments and progressive conditions do not always have up to date medical evidence. And I found that IAS did not give any credibility to my evidence and examples stating that my account of my husband’s restrictions is inconsistent with the HPs observations and prejudiced opinion about cognition. 

7a: I think I have covered this already in answer to question 1 but have a bit more to add.

As I said earlier DMs are not equipped to deal with difficult questions about Consultation reports, or indeed any complaints or questions around consultation and services of IAS. So, I found that my MR letter which contained even more examples and information about mu husband’s impairments was a pointless waste of my time as DWP could not and did not reply. DWP referred straight back to IAS for supplementary advice/reconsideration. According to PIPAG what should have been a thorough consideration was in fact a dismissal and support for Consultation report giving zero points. Claimants MR letters should go to IAS for their HPs to answer alongside the MR/reconsideration making IAS accountable and transparent about choice of descriptors. These earlier interventions would I think lead to less appeals. Apart from the f2f there is no further contact between IAS and claimant so in theory, and I do believe this happens, IAS can produce a report of poor standard, one that could be full of inaccuracies, that could be biased yet the claimant has no direct way of addressing that except by way of complaint to IAS. But an independent complaint does not change the course of a claim that is more than likely on its way to Tribunal. As part of the claim process allow claimants to challenge and question IAS actions.

9b: For those who have the equipment and are capable or have someone who can manage the claim for them, as I do for my husband, then doing it online has its benefits.

● No waiting for forms to be posted (I waited 2 months for PIP claim form)

● No concerns about posting and returning forms on time or getting lost at Mail Handling

● Would be able to see claim was being dealt with

● Could monitor progress of claim

● Reports could be seen online as and when they are completed

● Be informed of a decisions timeously

However, I am not sure about submitting further evidence, particularly sizeable documents. Not all online is straight forward and I do not always want to read from screen so tend to print documents. So, I think that claimants should always have a choice as to how they claim and manage it.


November 2021