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Hi

I am an ex-call centre employee of Maximus (2 years and 8 months) and a PIP claimant that is currently waiting for Tribunal after a hyper incompetent substandard assessment was done on my condition.
I have a mountain of personal evidence that I think would be useful to the review . However, to get information on the bigger picture and the failing business model Maximus works too I have been waiting for the DWP on a FOI request for some months . They are being obstructive .

The judiciary have been saying for years this business model does not work . Up to 65 of cases in tribunal are awarded PIP. Time frames and public expenditure are unacceptable. Claimants suffer.

What specifically would you like form me to assist further? Could your team get the FOI Team to gather the stats I have asked for? 

I genuinely cannot see how any reasonable-minded person can take issue with the questions.

If someone doesn't want to contribute to the consultation that's fair enough, but to try and put other people off contributing is anti-democratic and working against the interests of vulnerable people.

If we all stop arguing, look at what we can do and then do it at least we have achieved something.

This reminds me of M. Thatcher, who used to ask her the then cabinet members to debate something that she and her aides had already decided on, and that any cabinet member who disagreed with was kicked out at the following reshuffle.

Response to the Timms Review of Personal Independence Payment: Call for Evidence

Submitted by: A disabled person living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Introduction

I am submitting this response as a disabled person suffering from the severe neurological disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). My response addresses the four key themes and questions posed by the Timms Review.

I am deeply concerned by the explicit and implicit attempts within this consultation to link Personal Independence Payment (PIP) to a person's ability to work. PIP was designed as an in-work and out-of-work benefit to cover the extra costs of disability. Linking it to employment is not only a fundamental distortion of its purpose but also poses a severe risk of harm to disabled people, particularly those with energy-limiting conditions like ME/CFS. What we desperately need is a trauma-informed benefits system that protects disabled people, rather than one that seeks to force people who are too ill to work into employment.




Question 1: How effectively is PIP delivering on its intended role and purpose?

PIP is currently failing to effectively deliver on its intended role and purpose, largely because the Department for Work and Pensions (DWP) appears to be losing sight of what that purpose actually is.

The original and legal purpose of PIP, as established under the Welfare Reform Act 2012, is to provide a non-means-tested contribution toward the extra costs faced by disabled people and those with long-term health conditions, regardless of their employment status
. PIP is not, and was never intended to be, an out-of-work benefit or a wage replacement.

Currently, the extra costs of disability are soaring. According to Scope's 2024 Disability Price Tag report, the average extra cost of disability is equivalent to 67% of household income after housing costs, with many households facing extra costs of £1,224 a month
. For people with ME/CFS, these costs include mobility aids, specialized diets, increased heating bills due to poor temperature regulation, and the need to pay for services (such as cleaning or food delivery) that healthy people can do themselves. PIP is essential for mitigating these costs and allowing a basic standard of living.

However, PIP fails to deliver on this purpose effectively because the assessment process acts as a hostile barrier rather than a supportive gateway. The system is fundamentally not trauma-informed. Instead of enabling disabled people to live independently, the arduous and adversarial nature of claiming PIP often exacerbates the very conditions it is meant to support.

Furthermore, the consultation's framing—specifically asking about "the role of PIP in enabling and supporting people to do meaningful activity, including employment"—is deeply alarming. Attempting to backdoor a link between PIP and work is a dangerous ideological shift. For many people with ME/CFS, employment is biologically impossible.

Recent quality of life (QoL) studies starkly illustrate the profound functional impairment caused by ME/CFS. A 2015 study published in PLoS One found that patients with ME/CFS had the lowest health-related quality of life scores when compared to 20 other serious conditions, including multiple sclerosis, cancer, and heart disease
. This devastating lack of function directly translates to an inability to work. A 2024 multinational study published in Medicina revealed that 97% of ME/CFS patients were affected by an inability to perform usual activities, and 83% suffered from impaired mobility
. Furthermore, recent research from Norway confirms that very few ME/CFS patients ever recover enough to return to the workforce, even up to nine years after diagnosis
.

The defining symptom of ME/CFS is Post-Exertional Malaise (PEM)—a severe worsening of symptoms following minimal physical or cognitive exertion
. Because of this, pushing people with ME/CFS toward employment through the PIP system will not enable independence; it will directly cause physical harm, severe relapses, and a further loss of independence.

Question 2: Does the PIP assessment, including the assessment criteria, effectively capture the impact of long-term health conditions and disability in the modern world, and provide fair access to the right support at the right level across the benefits system?

The current PIP assessment criteria categorically fail to capture the impact of fluctuating, energy-limiting neuroimmune conditions like ME/CFS. Consequently, it fails to provide fair access to the right support.

The assessment framework is heavily biased toward static, physical disabilities and visible impairments. It routinely misinterprets the complex reality of ME/CFS. Assessors frequently view symptom fluctuation as "improvement" or "recovery potential," which contradicts international clinical consensus. The 2011 International Consensus Primer for ME (ICP-ME) defines it as a multi-systemic neuroimmune disorder requiring a documented loss of at least 50% of functional ability
.

The fundamental flaw in the PIP assessment is its failure to properly account for Post-Exertional Malaise (PEM). The PIP criteria ask if a claimant can complete an activity "safely, to an acceptable standard, repeatedly and in a reasonable time period." However, assessors routinely ignore the "repeatedly" and "safely" criteria. A person with ME/CFS might be able to cook a meal once, but doing so may trigger a severe PEM crash that leaves them bedbound for days. The assessment fails to capture the cost of the activity on the claimant's health.

This failure to understand ME/CFS leads to widespread inaccurate assessments. The high rate of PIP decisions overturned at tribunal—consistently around 65-67% across all conditions
—is a damning indictment of the assessment's inaccuracy. For complex conditions like ME/CFS, the initial assessment is often little more than a box-ticking exercise that ignores clinical evidence and the lived reality of the disease.

To provide fair access, the PIP assessment must:

1.
Retain ME/CFS as a recognized long-term, chronic condition.

2.
Explicitly embed PEM into the assessment guidance to reflect its disabling impact.

3.
Stop penalizing claimants for the fluctuating nature of their condition.

4.
Rely heavily on specialized medical evidence rather than the brief, often inaccurate observations of non-specialist assessors.

Question 3: What is the experience of people claiming PIP and does this vary for different groups of people?

The experience of claiming PIP is overwhelmingly negative, highly stressful, and profoundly traumatizing. For people with ME/CFS, the process itself is a health hazard.

A recent trauma-informed framework analysis of individuals' experiences of PIP assessments published in the Journal of Social Policy found that the process is "severely re-traumatising, with a prolonged adverse effect on mental health"
. The study identified five key themes in the claimant experience: harm, distrust, rigidity, intimidation, and powerlessness. This perfectly encapsulates the reality for the ME/CFS community.

The cognitive exertion required to complete the lengthy "How your disability affects you" form, gather medical evidence, and endure a high-pressure assessment interview directly triggers PEM. Claimants are forced to push beyond their energy limits just to prove they are ill, often resulting in severe physical deterioration.

The culture of disbelief within the DWP and among assessment providers means that claimants are treated with suspicion. For a condition like ME/CFS, which lacks a simple diagnostic blood test and is historically stigmatized, this distrust is magnified. Claimants frequently report that assessors omit crucial information about their fatigue and pain, leading to unjust denials of support.

The subsequent need to go through Mandatory Reconsideration and the Tribunal appeals process prolongs this trauma for months or even years. This is not a system that supports independent living; it is a hostile environment that punishes people for being sick. We urgently need a trauma-informed benefits system built on principles of safety, trustworthiness, and compassion, rather than suspicion and interrogation.

Question 4: What has changed in wider society and the workplace since 2013 (and might be expected to change in the future) and how has this impacted PIP and does PIP need to change accordingly?

Since 2013, the prevalence of chronic illness and disability has increased, partly due to an aging population and, more recently, the mass disabling event of the COVID-19 pandemic, which has resulted in a surge of Long Covid cases (a condition with striking clinical similarities to ME/CFS). Furthermore, the cost of living—and the specific extra costs of disability—has skyrocketed.

However, what has not changed is the biological reality of severe neuroimmune diseases like ME/CFS.

The consultation's focus on "changes in the workplace and labour market" in relation to PIP is highly inappropriate. While remote work and flexible hours have become more common for healthy people, these changes do not magically cure ME/CFS. For a person suffering from severe PEM, cognitive dysfunction, and chronic pain, working from home is just as impossible as working in an office.

There appears to be a dangerous policy trajectory aimed at using PIP to offset the planned abolition of the Work Capability Assessment (WCA)
. PIP must remain completely decoupled from employment status and work capability. Linking PIP to work will inevitably lead to disabled people being coerced into unsuitable employment under the threat of losing their vital financial lifeline. For people with ME/CFS, forced exertion leads to permanent physical deterioration.

If PIP needs to change, it must change to better fulfill its original purpose: providing financial support for the extra costs of disability. It must be redesigned in co-production with disabled people to become a compassionate, trauma-informed system that accurately assesses fluctuating and energy-limiting conditions. It must absolutely not be weaponized as a tool for welfare reduction or forced labor participation.




References

[1] UK Parliament. (2012). Welfare Reform Act 2012.
[2] Scope. (2024 ). Disability Price Tag 2024.
[3] Hvidberg, M. F., Brinth, L. S., Olesen, A. V., Petersen, K. D., & Ehlers, L. (2015 ). The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One, 10(7).
[4] Muirhead, N. L., Vyas, J., Ephgrave, R., Singh, R., & Finlay, A. Y. (2024 ). Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS. Medicina, 60(8), 1215.
[5] ME Association. (2025 ). Science Norway: Almost no ME/CFS patients return to work.
[6] National Institute for Health and Care Excellence (NICE ). (2021). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.
[7] Stripy Lightbulb CIC. (2025 ). The Case for Change: Recognising M.E. in PIP Assessment Policy.
[8] Ministry of Justice. (2025 ). Tribunal Statistics Quarterly: July to September 2025.
[9] Roberts, H., Stuart, S. R., Allan, S., & Gumley, A. (2022 ). ‘It’s Like the Sword of Damocles’ – A Trauma-Informed Framework Analysis of Individuals’ Experiences of Assessment for the Personal Independence Payment Benefit in the UK. Journal of Social Policy, 53(4).
[10] Benefits and Work. (2026 ). PIP and work linked in appalling Timms review public consultation.

My survey response. Thanks to B&W for the guidance. My answers are a little emotive- can’t help it, sorry.

1.How effectively is PIP delivering on its intended role and purpose?

My understanding of PIP’s role and purpose (are these different things???) is that it is to help with the additional costs of disability. The DWP’s aims in creating PIP appears to have been to cut the benefit bill by replacing the old system with a less generous one.

The fact you don’t define what is the purpose or role of PIP when you ask this question means you have no idea what the person who is answering your question has in mind. Therefore the answers you receive will be useless for analysis.

2. Does the PIP assessment, including the assessment criteria, effectively capture the impact of long-term health conditions and disability in the modern world, and provide fair access to the right support at the right level across the benefits system?

This is an awful, incompetent question. What do you mean by ‘assessment including assessment criteria’? Do you mean the form, the medical evidence, the guidance and training of health professionals, or even the types of health professionals used? Do you mean the format of the assessment itself- in person/ telephone/video/paper based? Do you mean the points system? Do you include the appeal/challenge system?

How on earth will you analyse thousands of responses when your question is so badly defined??

You don’t explain what you mean by ‘impact’ - impact on what? Impacts are so varied. They can include the impact on engaging with the outside world, being treated with respect, an individual’s ability to meet their care needs…The list goes on. Again, how will you analyse responses when each respondent will have a different understanding of what you are asking?

What do you mean by “provide fair access to the right support at the right level across the benefits system”? If the question is unclear, how can it be answered in a meaningful way?

Analysis of answers to this question will produce useless data because the question is ill defined, far too broad and far too complex.

3. What is the experience of people claiming PIP and does this vary for different groups of people?

Why are you asking me to reflect others’ experiences, or expecting me to know whether experiences vary? That isn’t for individuals to know!

MY experience is that people with genuine disabilities, who have higher costs because of their disabilities, have to fight tooth and nail (through a suspicion-led system that offers no dignity and respect) to get the bare minimum of financial support. Then they have to repeat the process even if they have a disability that is incurable and will not improve. In enduring this process, for which they need to be resilient if they have any chance of success) they are gifted added stress by the DWP and made to feel like they’ve gone with their begging bowl.

4 What has changed in wider society and the workplace since 2013 (and might be expected to change in the future) and how has this impacted PIP and does PIP need to change accordingly?

You seem to expect extensive sociological knowledge as well as the ability to predict the future with this question. I don’t think the majority of respondents will meet your expectation.

Why are you asking about work? People with higher costs associated with disability will need financial support when they are not working and will need financial support when they are working. Their higher costs don’t go away if they are in work.

If your plan is to link PIP to work, what are you planning to do with people who cannot work? Are you hoping to ‘incentivise’ them out of their disability by making them poorer?

Is there anything else you would like to tell us?

Your questions will not produce answers that are useful for any meaningful analysis. Is this another DWP smokescreen so you can declare you have conducted a consultation?

You ask me in the following optional question (3) who I am responding as, but as this survey is anonymous, I could be anyone, couldn’t I? So if you have lots of respondents purportedly from organisations representing disabled people, who’s to say they’re not just from the DWP?

At the very least it seems incredibly rushed and badly thought out. It may well be a total sham. This, and McFadden's recent speech implying they're going to try another round of "reforms", i.e. cuts, just reinforces the importance of the May elections. If they're as bad for Labour as the polling suggests, and they lose badly to the Greens, the SNP and Plaid Cymru - all parties to their left - then that will prove that pursuing right wing policies (like benefit cuts) carries a very heavy electoral price. There is then a very realistic chance of a leadership challenge and Starmer being ousted.

In that case McFadden might be out as well, as he is one of the inner circle around Starmer. It depends on Starmer's successor realising that a change of direction in policy is needed, but there wouldn't be much point in getting rid of Starmer, only to replace him with someone who carries on with the same policies. They're already clearly badly rattled by the Greens, especially after the Gorton and Denton by-election, and the polling is very clear that they are losing a lot more of their voters to the Greens and other left wing parties than they are to Reform. It must be dawning on Labour MPs that that process will only be exacerbated by trying to clobber sick and disabled people again. Even if they don't give a damn about us, they certainly do give a damn about holding on to their seats at the next election. 

The online form itself is presented in much more straightforward terms and gives you a lot of freedom on how to answer as suggested in this paragraph:

“Providing evidence is optional and you do not have to respond to all of the above prompts if you do not want to. You may comment on any area in the Terms of Reference using your preferred structure.”

The person who mentioned it being like a phd made a good analogy - to me it reads a lot like those gcse English lit question boxes on exams

There’s a single answer box to cover all their points they are focusing on and a separate answer box where you can make all the additional points you think have relevance that the questionnaire bullet points haven’t covered

And the anonymous part - they do give the option to provide an email address to receive updates which would give a way for disability charities/organisations to id their response.

Look, it’s extremely bad form that we’ve only been given 8 weeks to fill out this questionnaire (I get the impression that Timm’s team had a extremely hard time putting this together hence why this is getting released only now and why the questions are so half baked) The timms report is getting submitted to McFadden and the gov late summer/early autumn 2026 so timms seems to be allowing 3 odd months to go through the responses. 

So the evidence is there that the timms report is being rushed and even if it wasn’t the organisation of all parts is still a disorganised shambles and is not being given the care it should (the timms report needs to be given at least an additional 6 months before its submittion to the gov. But I think that’s the fault of pat McFadden (Mcsweeney old right hand man) who we know has as much compassion as the grim reaper.

The questionnaire itself once broken down is better than the 2025 dwp consultation imo if you just read the online form version which is presented much more simplistically than the accompanying pdf guide.

Also can I point out that by the time this questionnaire submitting period is over late may we would of completed the local elections and there’s a minimum 50:50 chance that starmer would of been ousted and we will be in the process of a Labour leadership battle. As pat mcfadden was so tied to the mcsweeney (sorry, I meant the starmer era but you know what I mean) I’d be surprised if the new leader would want to keep McFadden as head of dwp unless they also had strong recent ties with mcsweeney (though I believe timms will be kept in position for the time being) 

Point that I’m trying to make is that when the questionnaire responses are being gone through we could have a new dwp minister who could be significantly more interested in this questionnaire responses and opinion and whom may extend the timms report deadline so things can be done properly.

Which is why I again say this questionnaire is worth filling out - especially in the chance that dwp (new) leadership is more sympathetic…………..at this point McFadden might be as bad as things get (touch wood, don’t want to jink things)

The Committee have undoubtedly already discovered that this is a huge difficult subject and are probably unable to come up with anything in terms of who should get PIP and why. 

They will just end up tinkering with it. 

It is important however the Survey be completed. If only in the hope that someone at the other end may see your response and pause, or even stop short of doing something drastic. 

Or is the consensus to boycott this.

Honestly even though the disabled community has made great increases in being proactive (which is a huge reason behind the semi success of derailing labour govs first attempt to cut welfare and tighten criteria) but there is still a number who complain online about the evils of the dwp but refuse to be proactive in terms of taking parts in consultations, online/public protesting and contacting MPs and even local council.

This is Labour being even dirtier than the Tory dwp 8 week consultation that was ruled unlawful by not calling it a consultation to get away with the far too short reply time.

But that doesn’t mean as many of us as possible shouldn’t be sending a response to this ‘timms report call for evidence’ even if it’s copying and pasting a template response (if any charity or disability forum admin or skilled in emailing disabled individual is reading this I hope they’d be willing to share templates).

The timms report wraps up this summer and is reported to present findings (and reform outlines) in the autumn - our community has 4-6 months to make our case to the gov and individual MPs before the dwp under Labour launch their 2nd attack attempt to reduce welfare and disqualify many of us being meeting tightened pip criteria (we already know the Labour gov are going to go out of their way to try and disqualify those of us claiming for mental health conditions and/or neurodiverse disabilities so those of us under those umbrellas should be ultra motivated to be proactive in this next fight of the timms report coming our way this year)