Written evidence from Peter Kemp (HAB0012)

Summary of the comments

The comments include personal accounts and documentary evidence of numerous failures by Independent Assessment Services (formerly ATOS. IAS/ATOS) and the DWP, and include:


I have been disabled by Myalgic Encephalomyelitis (ME/CFS) for over 30 years. I have had numerous problems accessing benefits to which I am entitled and need to survive. In 11 (eleven) encounters with DWP (or ATOS) assessors I have found that around 50% are incompetent and/or corrupt. I have never encountered an assessor who knew how to evaluate disability with ME/CFS.

1. How could DWP improve the quality of assessments for health-related benefits?

The outcome of assessments (the decision) certainly requires improvement, but not necessarily because there is anything intrinsically wrong with the assessment protocols. Many problems arise because procedures are not followed by either the assessment company, e.g. Independent Assessment Services formerly ATOS (IAS/ATOS) nor the DWP.

IAS/ATOS and the DWP routinely ignore the DWP’s rules for conducting assessments. It is therefore rational to project that any changes to the system or rules could be similarly ineffective, unless their design incorporates stringent checks to ensure adherence to the rules.

At present, it is the Tribunal system which fulfils the role of ensuring adherence to the procedures for benefit assessments. Their judgements show that in PIP Tribunal appealed cases, for at least 76% of cases the rules have not been followed by IAS/ATOS and the DWP.

Neither IAS/ATOS or the DWP have any financial motivation to follow the rules for assessments. There is in fact financial motivation for them NOT to do so in terms of saving the government money. It is of no consequence to IAS/ATOS, the DWP or the government to deny or downgrade as many benefit claims as possible, safe in the knowledge that it will not cost them a single penny:

Assuming that Tribunals are twice as reliable when denying PIP claims compared to the DWP, and ignoring subsequent appeals etc.


DWP PIP denial decisions overturned by Tribunal


DWP PIP denial decisions upheld by Tribunal


Tribunal assumed to be 100% more reliable than DWP when denying PIP claims


Post PIP appeal Tribunal wrong denials (38% of 24%)


Average weekly PIP (mean of higher and lower rates of mobility + care)


Weekly savings per 1,000 appealed claims due to wrong denials


Estimated cost of 1,000 Tribunal appeals @ £650 each (2014-15 was £579, FOI)


Time for savings in wrong denials to match the cost of 1,000 Tribunals

61 weeks or

1.17 years


Even if Tribunal decisions were three-times more reliable than the DWP when it came to denying appealed claims, the cost of all 1,000 Tribunals would still be recovered in 91 weeks or 1.75 years. These proportions would remain the same for any number of Tribunals.

These figures do not take into account sick and disabled people who are too ill or too daunted to appeal (or to apply in the first place), or those that accept a lower rate award where the higher rate was warranted. It does not take into account people who simply believe that a DWP or Tribunal decision is ‘official’ and ‘legal’ and must therefore be reliable. It does not take into account those who cannot access support and representation to help them appeal, bearing in mind that sickness and disability are known to cause isolation which depletes support networks.

Sooner or later, even with low levels of wrongly denied PIP claims, they will meet the entire cost of the appeals processes. Wrong decisions cost benefits applicants money, stress, humiliation and sometimes their very lives, but those responsible for conducting illegal assessments and making illegal decisions are not even held to account let alone charged anything.

A widely held suspicion is that companies like ATOS and institutions like the DWP are motivated to deny claims for the purposes of saving the government money. So simply denying claims out-of-hand based on ludicrous extrapolations and forcing large numbers to go to appeal is a financially sound and unbelievably cruel policy.

It is a pointless exercise to replace a system when those responsible for its correct operation lack either the ability or motivation to run it properly. If a car repeatedly crashes into the same wall, putting a new engine in it or even replacing the whole car will not solve the problem. A new driver is needed. Alternatively, one could remove the wall (i.e., the appeals system) so that the accident would happen elsewhere – perhaps where nobody would notice or care.

In my opinion the attention of the above inquiry is misdirected. The DWP cannot possibly be relied upon improve the quality of assessments, because they consistently fail to conduct assessments and make decisions according to their own procedures and the law. It would be wilful blindness to entrust the DWP with implementing any changes or an entirely new system, when they cannot or will not manage the current system properly. It would be similarly pointless to entrust the government with correctly identifying the causes of a situation that they have created in order to impose austerity on the sick and disabled of our country.

IMO, the first question that needs addressing is: why do the DWP fail to follow their own legal procedures, as evidenced by the disturbing frequency with which Tribunals find against them?

Is it poor training or incompetence or external pressures, or could it be discrimination - possibly originating from or exacerbated by government spin directed against the sick and disabled, or is the system really at fault? E.g.:

https://www.theguardian.com/society/2012/feb/05/benefit-cuts-fuelling-abuse-disabled-people. Benefit cuts are fuelling abuse of disabled people, say charities. The Guardian, Feb 2012.

https://www.learningdisabilitytoday.co.uk/impact-of-cuts-in-services-for-people-with-learning-disabilities The impact of cuts in services for people with learning disabilities in an inner city borough. “The experience of the learning disability community in Haringey reflects the nationwide impact of austerity policies.”


https://www.turn2us.org.uk/T2UWebsite/media/Documents/Benefits-Stigma-in-Britain.pdf “Benefit stigma in Britain is primarily driven by the perception that claimants are ‘undeserving’. Key criteria for achieving a ‘deserving’ status were need, and the level of responsibility that claimants were seen to hold for their own situation.” University of Kent

I suggest that the next questions should be: what motivation is there for assessment companies and the DWP to make accurate, reliable and legal decisions and awards? How can assessors and decision makers (DM’s) who achieve a high standard of reliability be recognised and those who are incompetent be held to account?

At present, it appears that assessors are encouraged to submit reports to DWP decision makers, that provide ‘evidence’ that will help them to downgrade or deny claims. E.g.:

“Mrs X was observe to be able to put on her glasses”

“Mr X brushes his cat”

(actual examples)

This sort of ‘evidence’ allows DM’s to extrapolate that the ability to perform these actions indicates normal arm movement and coordination. Therefore the DM can ‘deduce’, without any evidence that the claimant must also be able to wash, dress, prepare a cooked meal, perform minor surgery and build a new extension on the house.

a. Have you seen any specific improvements in the process since the Committee last reported on PIP and ESA assessments, in 2018?

Since applying to transfer to PIP from DLA in September 2019, I have personally experienced and witnessed 20 months of discrimination, lies, mistakes, abuse, ignorance and incompetence. I shudder to think that prior to 2019 the system could actually have been worse.

Timeline of appointments/contacts for my PIP application


The DWP PIP assessment guide states:


1.15 Consent and confidentiality


1.15.1 Consent is an integral part of claims for benefit but it cannot be assumed that in an individual case consent has been given or that consent previously given remains valid. Thus, in every case and before each instance that information is obtained or released, checks should be made to ensure valid consent is held.

1.15.2 Consent may be written, verbal and in certain circumstances given by a third party.

1.15.3 For consent to be lawful under the Data Protection Act 1998 (DPA) it must be ‘fully informed and freely given’.

1.15.4 For consent to be fully informed and freely given the claimant must know exactly why the information is needed, what is going to be done with it, and with whom it might be shared.

3. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?

No particular set of descriptors will ever accurately assess functional impairment unless the protocol for their assessment is followed. As ESA, DLA and PIP assessments have never been conducted with due regard for the rules and procedures of evaluating a descriptor, there is no way of knowing whether they, or any alternatives could produce accurate assessments or not.

6. How practical would it be for DWP’s decision makers to rely on clinician input, without a separate assessment, to make decisions on benefit entitlement? What are the benefits and the drawbacks of such an approach?

For many of the estimated 150-250,000 UK patients with ME/CFS (e.g., up to twice as many cases as MS), relying on clinician input could prove to be a waste of time in a substantial proportion of cases.

The NICE draft guideline for ME/CFS, November 2020, states; “One strong theme showed how experiencing a lack of understanding and prejudice can lead to people losing trust in health and social care services.

The fact is that many ME patients will not go to their GP unless absolutely desperate. They often have no consultant and don’t want one because in the past they have been discriminated against and openly abused by medical staff. Many ME patients have been so effectively disenfranchised, that they do not have equal access to the NHS as other sick and disabled people.

It would probably be useless to rely on a GP’s judgements about a patient with ME, because they are as likely as the general public to have negative and prejudiced opinions about patients and the disease. They might see a patient once or twice a year, if that, despite the fact that the patient has a disease that has repeatedly been shown to result in a worse quality of life and greater disability than many other disabling diseases (see chart).

Add to this marginalisation the fact that there are no generally accepted medical tests to confirm/disconfirm an ME diagnosis or its severity, and it is obvious that these patients are extremely vulnerable to medical prejudice and neglect.

Hvidberg et al (2015) state that: "Compared to other conditions shown in Fig 3 from another more recent study [23], the ME/CFS patients of the current study have the lowest, unadjusted EQ-5D-3L measured HRQoL of 20 conditions, thus even worse than multiple sclerosis and stroke." (Hvidberg M Falk, Brinth LS, Olesen AV, Petersen KD, Ehlers L. 2015. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS ONE 10(7): e0132421. https://doi.org/10.1371/journal.pone.0132421. Available at: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0132421)

Lady Margaret Mar stated: “With regard to CFS/ME itself, this illness has been defined as a neurological disease by the World Health Organisation and the level of disability it causes has been compared with congestive heart failure, multiple sclerosis, rheumatoid arthritis and other chronic conditions…”. (Hansard: Lords: vol.710: no.67: 301-302. 8.02pm).

Taylor (2004) states: “In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, patients with (ME)CFS show markedly higher levels of disability” (Taylor, RR. 2004. Quality of Life and Symptom Severity for Individuals with Chronic Fatigue Syndrome: Findings from a Randomised Clinical Trial. American Journal of Occupational Therapy. January/February 2004, Vol. 58, 35-43. doi:10.5014/ajot.58.1.35.)

Table adapted from Table 1, in Hng, Gheraghty and Pheby. (2021) An Audit of UK Hospital Doctors’ Knowledge and Experience of Myalgic EncephalomyelitisMedicina 2021, 57(9), 885; https://doi.org/10.3390/medicina57090885  Available Online at https://www.mdpi.com/1648-9144/57/9/885/htm. Accessed Oct 10th 2021

Hospital doctor respondents n=44


95% CI



Have received some formal teaching on ME




Have seen some ME patients




I know how to diagnose ME




I feel confident dealing with ME patients





Hng, Gheraghty and Pheby’s conclusion includes: “ME suffers from being a Cinderella topic within the medical profession, largely ignored by the research community, as is evidenced by very low levels of institutional research funding over many years [60], as well as by high levels of ignorance and disbelief among doctors.”

When assessing patients with ME and similarly complex disabling conditions for PIP etc., it is essential that they should be assessed by someone who has some actual knowledge of the condition. In my experience, this requirement has never been met either for myself or any of the other patients whose accounts I have seen or heard. Therefore they are assessed by people who probably got their knowledge of ME from the TV and newspapers. Entertaining no doubt, but medically and scientifically useless.

Additional information on incompetence of assessors and assessments

on January 5th 2021, I had an assessment with ‘Danny’ who apparently was a paramedic. I asked him what he knew about ME, in order to get an idea how much I might have to explain about how disabled it makes me. He told me that he had been doing assessments for 5 years and had lost count of how many clients with ME he had assessed. His reply evaded the simple question and I suspected that I was being misled. (Ref recording @ 12:20. Full recording available on request with a statement of legitimate interest.)

As Danny the paramedic’s knowledge of ME was unclear I questioned him further. He obviously had no knowledge of ME whatsoever. He did not know of either the existence or the most basic contents of the NICE guideline for ME (CG53, 2007). NICE state: “Healthcare and other professionals are expected to take our clinical guidelines fully into account when exercising their professional judgement.” (https://www.nice.org.uk/process/pmg6/resources/the-guidelines-manual-pdf-2007970804933)

Danny did not know about Post-exertional malaise (PEM), even though other than fatigue meeting specific criteria, it is the only other obligatory symptom for a diagnosis according to NICE Guidelines. The symptom is so significant that it is described by various authorities as the ‘defining’, ‘hallmark’ and ‘cardinal’ symptom of the disease. The NICE guideline states: “There was strong agreement that persistent, debilitating, post-exertional fatigue characterised CFS/ME. Such fatigue may be accompanied by a wide spectrum of other symptoms.” It is impossible to have any clinical knowledge about ME whatsoever, without being aware of it’s primary symptom of Post-exertional malaise.

Danny was working way beyond the scope of his knowledge in breach of the Health and Care Professions Council, Standard of Conduct:

The Health and Care Professions Council Standard of Conduct


(relevant to physiotherapists and paramedics conducting PIP assessments)

The HCPC state:

“Standards of conduct, performance and ethics
You must keep within your scope of practice by only practising in the areas you have appropriate knowledge, skills and experience for (3.1)
You must refer a service user to another practitioner if the care, treatment or other services they need are beyond your scope of practice (3.2)

“We define your scope of practice as the limit of your knowledge, skills and experience. It is made up of the activities you carry out within your professional role, provided that you have the knowledge, skills and experience to do them lawfully, safely and effectively.”

I would be interested to know how Danny’s report was going meet the DWP’s requirement to ensure that, “The report to the department should include”:information on the disabling health conditions or impairments, as well as,advice on the likely prognosis for the claimant’s condition”.


The PIP assessment guide part 3: health professional performance
(Updated 30 September 2019) states:


3.0.1 This document sets out the processes to be followed by providers to ensure health professionals (HPs) carrying out Personal Independence Payment (PIP) assessments meet the required performance standards, including the requirements around competencies, training, approval audit and complaint handling.

3.1.1 All HPs recruited for the delivery of PIP assessments (or any parts of these) must meet the following requirements:

3.1.2 Before they are approved to carry out assessments, providers must be able to demonstrate that HPs:

have appropriate knowledge of the clinical aspects and likely functional effects of a wide range of health conditions and disabilities

have appropriate skills in assessing people with physical health conditions, including history taking, observation and ability to perform a relevant examination

have appropriate skills in assessing people with conditions affecting mental, intellectual and cognitive function, including history taking, observation and ability to perform a relevant examination

are able to critically evaluate evidence and use logical reasoning to provide accurate evidence based advice

It is impossible to evaluate a claimant with ME without including how their disability is affected by Post-exertional Malaise. Omitting this crucial factor would render any report incomplete and misleading. It would not be a ‘relevant examination’. If a Health Professional is not even aware of the existence of this symptom, let alone its far-reaching effects and implications, then they are not competent to conduct an assessment of an ME patient.

It seems incredible that a company such as IAS/ATOS conduct these assessments with employees that are so plainly unfit for the duties they perform. Nor does it make sense that such a large organisation would take such a careless approach to fulfilling a government contract. However, it might make sense if for example, their aim was not to provide ‘accurate evidence based advice’, but was instead, to provide ‘evidence’ that can be exploited to downgrade or deny claims.

7. Appeals data shows that, for some health-related benefits, up to 76% of tribunals find in favour of the claimant. Why is that?

See my reply to question 1.

Image Source: (https://www.bbc.co.uk/news/uk-49891159)

The government’s aim to save money regardless of the cost to the sick and disabled is partly responsible. To enact their plans it was necessary to vilify the sick, disabled and other benefits claimants, creating a culture of discrimination in which IAS/ATOS and the DWP could torture the disabled with impunity. E.g.: ‘real jobs’, ‘lifestyle choice’, ‘tough love’, ‘the neighbour’s blinds still drawn when you go to work’, etc. The spin aimed at denigrating the disabled has been very successful. Cases of abuse, both verbal and physical, rose to unprecedented levels. Thousands have died while awaiting the results of an appeal. Some of them must have realised that not only did their government not care about them – it hated them and wanted the general public to hate them as well. The government were so successful in disenfranchising the disabled that they created a climate where it actually became even more humiliating and dangerous to be disabled. An inevitable outcome of such a situation was that more benefit claimants would be forced to appeal.

This is clearly evidenced in the chart above from the BBC. In 5 years the appellant success rate of sickness and disability Tribunal appeals rose from 40% to >70%. The system for assessing sickness and disability benefits has remained virtually identical for decades. The most significant changes with PIP relate to the levels of qualifying disability the benefit requires, and in many cases the qualifications and motives of those conducting assessments must also be considered as factors. The methods, protocols and even the organisations assessing benefit entitlement have remained the same.

Therefore it is logical to conclude that those responsible for assessments have not only become reluctant to award benefits, but feel authorised and encouraged to act according to their personal and/or institutional motives and prejudices with impunity.

a. What could DWP change earlier in the process to ensure that fewer cases go to appeal?

Conducting assessments legally and according to the DWP rules, would undoubtedly produce more reliable reports and decisions. Unfortunately, after having 3 assessments for DLA and 3 for PIP (recordings available on request accompanied by statement of legitimate interest), I do not recall ever being asked questions that would satisfy the DWP rules for assessing claims. The same holds true for other ME patients that I have communicated with.

DWP rules require:

1)      Approach – … whether they can do it whenever they need to; and whether it is safe

2)      Outcome – whether the activity can be successfully completed and the standard that is achieved

3)      Impact – what the effects of reaching the outcome has on the claimant

4)      Repeatability - whether the activity can be repeated within a reasonable period of time and to the same standard

5)      Impact of completing one activity on the ability to complete other activities must also be considered.

6)      Variability – how a claimant’s approach and outcomes and level of functional restriction change over time and the impact this has on them.

7)      Reliability - for a descriptor to be able to apply to a claimant, the claimant must be able to reliably complete the descriptor.

8)      Time periods, fluctuations and descriptor choices

Not only are these factors obligatory, they are legal requirements whose omission is probably responsible for numerous successful Tribunal appeals. NOTE:

In 2014, the Disability News Service published an article about a whistleblower whose claims implied that the DWP and assessment companies were colluding to defraud PIP claimants. [emphasis added].


Confusion over ‘whistleblower’s’ shocking PIP claims

By John Pring on 30th May 2014


The email warned that a group of Atos managers had been briefed by Department for Work and Pensions (DWP) civil servants, who told them how they were supposed to interpret new guidance for personal independence payment (PIP), the replacement for working-age disability living allowance.

The email – based on a conversation with the Atos whistleblower – described how she and her colleagues had been summoned to a meeting, but before entering the room had been searched by security guards to ensure “that no-one entered with any recording device, mobile phone, tablet, pen, paper etc”.

The email then detailed how they were told about a number of alleged “clarifications” to the PIP process that would make it harder to claim the new benefit.

One “clarification” was that assessors should now ignore previous instructions that claimants must be able to carry out all activities “safely, reliably, repeatedly and in a reasonable time period”.

This was one of the claims that horrified many of the campaigners who read the email this week. [….]

But despite the persuasive detail contained in the email, the Department for Work and Pensions (DWP) and Atos have insisted that its entire contents are untrue.

A DWP spokesman told DNS (disability news service):

“None of the points you raise below are true. The reliability criteria and the assessment criteria, including the descriptors [which describe how able someone is to carry out an activity], are contained in legislation and therefore cannot be and definitely are not ‘ignored’.”

The DWP spokesman quoted makes it clear. Ignoring the rules for evaluating a descriptor would be illegal. What I have witnessed first-hand, is that IAS/ATOS assessors routinely omit the obligatory factors described above.

For claimants with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), the PIP Assessment Rules make Post-Exertional Malaise an obligatory consideration – whether an activity causes PEM, or whether an activity is being affected by PEM

According to NICE Guidelines, patients diagnosed with any severity of ME or CFS, must have fatigue which:

And patients with Severe ME or CFS,

IAS/ATOS and the DWP discriminate against claimants with ME/CFS

The factors described above relating to ME/CFS and PIP assessments show that:

1. The impact of ME or CFS on an applicant requires special consideration in both the facilitation of applying for PIP and methods used for conducting assessments

2. The effects of PEM must be considered for each descriptor in any realistic assessment by applying all the conditions required by the DWP

Regarding #1, on three separate occasions, IAS/ATOS staff including a ‘customer care’ manager and an assessor, told me that a PIP assessment had to be conducted in one session. Even after I requested a ‘reasonable adjustment’ to accommodate my disability, this was reiterated to me. Completing an assessment in one session was completely beyond my physical or cognitive ability and the refusal by IAS/ATOS to make a reasonable adjustment was illegal.

I eventually made an FOI to the DWP. Their response includes:

Our Ref: FOI2021/73967

28 September 2021

Neither the Department for Work and Pensions (DWP) or Independent Assessment Services (IAS) have a process that states a consultation should be completed within a single session. Reasonable adjustments should be carefully considered on a case-by-case basis, with the aim of assisting claimants with their requests wherever possible. This may include the need for additional time to complete consultations, either on the same day or over a period of time.

Neither the Department for Work and Pensions (DWP) or Independent Assessment Services (IAS) have a process that states a consultation should be completed within a single session. Reasonable adjustments should be carefully considered on a case-by-case basis, with the aim of assisting claimants with their requests wherever possible. This may include the need for additional time to complete consultations, either on the same day or over a period of time.

Furthermore, IAS apologise for any incorrect information previously given, and consequently, guidance has been issued internally to address this.

Three separate members of IAS/ATOS staff, including a manager and an assessor, believed that not only were they permitted to break Disability Discrimination law by not making a reasonable adjustment, but believed that they were actually required to do so by the DWP. If this is not incompetence then I don’t know what is.

The rules for PIP assessments make Post-Exertional Malaise an obligatory consideration. This in turn makes all of the obligatory considerations for assessing an activity essential. For claimants with ME and CFS their omission would result in incomplete and misleading reports and decisions.

Patients with Severe or Moderate ME or CFS are putting their health at risk if they exceed their individual threshold for triggering PEM, or doing any activity – however minor, while experiencing PEM from a prior activity. As this threshold is variable and unpredictable it is very difficult for patients to avoid doing too much and/or doing it at the ‘wrong’ time. In these situations, the most trivial of activities can be unsafe because of the risk that it will prolong and worsen the PEM.

The NICE guideline (2007) defines ‘Exercise’ for patients with ME or CFS as: “Any form of physical activity that uses the major muscle groups of the body. Activities of daily living (for example, brushing hair or getting dressed), sitting up in bed and walking about are all exercise in the context of this guideline. Therefore even these trivial activities are recognised by NICE as physical stressors for patients with ME.

Therefore, for every descriptor evaluated in a PIP assessment of claimants with ME/CFS, the report would be incomplete and misleading if ANY of the legislated factors were omitted. Yet they almost invariably are.

Not only are these obligatory factors omitted by IAS/ATOS assessors, their absence in reports sent to DM’s does not result in the report being returned to IAS/ATOS for correction or completion.

Therefore the DWP are complicit in evaluating ME/CFS patients based on incomplete reports which omit vital information about how the claimant’s disability affects them.

The PIP assessment guide part 3: health professional performance states:


3.1.1 All HPs recruited for the delivery of PIP assessments (or any parts of these) must meet the following requirements:

3.1.2 Before they are approved to carry out assessments, providers must be able to demonstrate that HPs:

have appropriate knowledge of the clinical aspects and likely functional effects of a wide range of health conditions and disabilities

are able to critically evaluate evidence and use logical reasoning to provide accurate evidence based advice

Notwithstanding these requirements, DM’s accept and use reports from paramedics, nurses and physiotherapists who are not familiar with the most basic contents of relevant NICE guidelines and evidently, do not even know of their existence.

DM’s however, absolutely must have this knowledge. But despite this, they make decisions based on reports which they KNOW to be incomplete and misleading.

If IAS/ATOS and the DWP were not acting in disregard of the rules and regulations, then numerous appeals that they force claimants to make, would not be necessary.



October 2021