Department for Work and Pensions (DWP) training materials for Universal Credit assessors, released to the Canary via a Freedom of Information (FOI) request, have thrown cold water over DWP minister Stephen Timm’s tepid assurances on the Universal Credit Bill’s impacts for people living with fluctuating conditions.
This is because this key resource healthcare professionals conducting the Work Capability Assessment (WCA) use to learn about a chronic illness, myalgic encephalomyelitis (ME), is riddled with glaring factual inaccuracies, conflicting information, and alarming psychologising statements playing up rhetoric around ‘false illness beliefs’.
However, the controversial and shoddy training only makes sense when you learn who pulled it together – and which notorious organisation inputted into its production.
DWP WCA training for ME: a hotbed of harm
A DWP WCA training document on ME buys into bogus and dangerous smears that a prominent psychologising lobby of clinicians have weaponised against patients for decades. You can read the full document below:
Specifically, the training teaches assessors that patients acknowledging the physiological basis of their condition is a “poor prognostic feature”. In other words, it paints them as holding ‘false illness beliefs’ – a buzz biopsychosocial concept that cracks the door open to ‘think yourself better’ type psychosomatic therapies.
This junk science theory posits that it’s patients’ own misguided beliefs about the physical cause of their ME that’s preventing recovery. Needless to say, the disgusting idea has therefore been a central pillar of the disease’s psychologisation for many years.
The controversial claim in question comes specifically from a DWP training document titled Overview of Myalgic Encephalomyelitis (or encephalopathy)/Chronic Fatigue Syndrome (ME/CFS).
To start with however, it would be remiss not to acknowledge that the document does have its merits. Large parts of it look to be lifted from the up-to-date National Institute for Health and Care Excellence (NICE) guidelines. The version history at the start of the publication shows that it has been revised multiple times. One update coincides with the NICE guideline change.
Nevertheless, the training itself actually conflicts with the NICE guidelines in numerous places. And there’s an obvious reason for why this is the case.
DWP consulting… BACME?!
Notably, it revolves around another source the DWP document utilised. And it happens to be an enormously controversial one at that.
This is the British Association of Clinicians in ME/CFS (BACME). As I’ve previously highlighted for the Canary, the organisation exists to underpin ME clinics and their clinicians operating across the UK. In January 2021, it registered as a charity. Currently, the non-profit has around 200 professional members who pay yearly fees. It regularly hosts webinars and conferences for these members to network and exchange knowledge.
However, it has a contentious history fomenting the psychologisation of the disease. I wrote before how it was the brainchild of:
notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.
You can read more on BACME’s chequered history here. Crucially, the organisation continues to promote psychosomatic treatments discredited in the NICE guidelines. If that weren’t bad enough, healthcare teams in hospitals and clinics still refer to its guidance documents – and this has been actively harming patients.
It’s likely BACME’s inclusion in the document that undermines the better information derived from the NICE guidelines. And the training dedicates a whole section to its problematic ‘therapy’.
Enter Maximus, Serco, Ingeus, and Capita
As a result, the training is the kind of irreconcilable mess you might expect from an aggregation of conflicting approaches.
In one part, it tempers against the idea of ‘abnormal’ illness beliefs. Yet, in another, it leans into the discredited psychologising hypothesis. There’s other dubious points on symptoms, mental health, and a notable absence of mention on common comorbidities.
But ultimately, it’s also little wonder that the training is not fit for purpose. This is because it was none other than the big outsourcing companies with the multimillion WCA contracts themselves, namely Maximus, Ingeus, Serco, and Capita, who compiled it.
Specifically, the DWP confirmed to the Canary that a ‘Clinical Authorship Team (CAT)’ is responsible for the “annual production, review, and update” of all core training and guidance material (CTGM). And it is employees – clinical leads, authors, and admin leads – from each of the four companies that make up the CAT. The DWP’s clinical policy team, headed by its chief medical advisor, would also have overseen the production process.
It’s maybe unsurprising that these profiteering private providers have their greedy mitts all over core DWP training. This doesn’t detract from how alarming it is companies like Maximus and Serco with a history of harming claimants are responsible for developing these materials. This is training that will have a major impact on chronically ill and disabled outcomes at assessment.
You’d be forgiven for thinking the DWP would consult condition-specific experts for its training material. Of course, where ME’s concerned, these are admittedly few and far between. Moreover, the NHS, DWP, and other public authorities have a record for dismissing the specialists who don’t ascribe to the biopsychosocial model.
Nevertheless, what’s arguably indisputable is that staff from these outsourcing giants should be nowhere near its construction.
Revelations thanks to the tenacity of one chronically ill campaigner
As far as the Canary can tell, the document is the sole mandatory training the DWP requires WCA assessors undertake on the condition – and is designed for healthcare professionals to complete in just 30 minutes.
The Canary obtained the document via a Freedom of Information (FOI) request to the DWP. ME patient, campaigner, and founder of ME training organisation Stripy Lightbulb CIC Sally Callow first brought its existence to the Canary’s attention.
Over a number of months, Callow had made a series of FOIs to the department. She sought to establish what training the DWP was using, who had formulated it, and who the department had consulted during the course of its production.
It was thanks to her persistent hard work that the Canary, in collaboration with Callow, was able to uncover some of this information.
Callow’s Stripy Lightbulb CIC is one of just a few CPD-accredited training courses on ME. Another is the NHS eLearning modules – one of which the Canary’s Steve Topple wrote about here. He underscored that while the training offered some significant improvements on what came before, it still presented a number of “glaring and dangerous issues”.
By contrast, Callow’s training comes from lived experience, and centred patient input as the starting point. It’s backed by evidence-based research, and provides a comprehensive and structured training programme.
She explained to the Canary that since 2019, she has repeatedly approached the DWP with her training. However, department staff had always rebuffed her offer. They had told her they do not accept training or input from third party organisations.
So, it was galling to discover that the DWP had in fact solicited information from a third party organisation after all: BACME.
A ‘systemic failure’ with ‘real-world consequences’
Callow told the Canary:
Since 2019, Stripy Lightbulb CIC has dedicated over 50 hours of unpaid time and expertise to the Department for Work and Pensions (DWP) through consultations and meetings aimed at improving understanding of ME/CFS. As the first CPD-accredited provider of ME/CFS training in the UK, our mission has always centred on delivering evidence-based, person-centred education for public sector professionals.
We were therefore deeply disappointed by the DWP’s assertion that, with regards to its in-house training, it will not collaborate with third sector organisations, such as ours, citing concerns about ‘bias’. If prioritising dignity, scientific integrity, and the wellbeing of disabled people constitutes bias, then we embrace that position without hesitation.
Moreover, Callow expressed her immense concern over elements of the training material:
Despite publicly committing to align staff training with the NICE guideline NG206 (2021), the DWP has handed responsibility to BACME, a charity whose materials continue to promote aspects of the long-discredited PACE trial, rebrand Graded Exercise Therapy (GET), a treatment NICE now warns against due to harm risks, and reinforce an outdated biopsychosocial model. Alarmingly, the DWP’s own training material suggests that patients who understand their condition to be physical face a poorer prognosis, a notion both reductive and medically unsound.
The department’s internal guidance, dated 10 May 2023, directly contradicts several foundational elements of the NICE guideline and undermines hard-won progress toward person-centred care. This is not simply a difference in clinical opinion. It represents a systemic failure with real-world consequences for chronically ill claimants, who continue to be assessed using flawed research and outdated frameworks.
WCA training and the Universal Credit Bill: disaster brewing
Recent policy moves have only put this training in an ever worse context.
MPs in the House of Commons recently passed the Labour Party’s Universal Credit Bill. This will have significant ramifications for people living with ME. Next to the WCA training on ME, it could be a recipe for disaster.
Containing a number of problematic clauses the government has designed to deny chronically ill and disabled people support, the legislation is set to strip hundreds of thousands of multiple thousands of pounds in vital welfare. It is now heading to the Lords on 22 July. There, this shameless government has machinated to rush it through both readings, report, and committee stage all in the space of a day.
One of these clauses sets out that for a claimant to meet the bill’s “severe conditions criteria” and consequently, the protections that confers, descriptors must apply “constantly” and:
do so for the rest of the claimant’s life.
The Canary’s Rachel Charlton-Dailey and many disabled campaigners and organisations immediately pointed out the problems with this when the DWP first published the bill.
During the debate preceding the vote, multiple MPs raised the red flag on this wording. However, Timms refuted their concerns. He has denied that it would deny chronically ill and disabled claimants with fluctuating conditions access to the government’s much-touted (but in reality, pitiful) protections.
Responding to SNP MP Kirsty Blackman, he argued that:
The form of words in the Bill, including the word “constant”, exactly replicates the way the severe conditions criteria are applied at the moment. The “constant” refers to the applicability of the descriptor. If somebody has a fluctuating condition and perhaps on one day they are comfortably able to walk 50 metres, the question to put to that person by the assessor is, “Can you do so reliably, safely, repeatedly and in a reasonable time?” If the answer to that question is no, the descriptor still applies to them. The question is whether the descriptor applies constantly. If it does, the severe conditions criteria are met.
Yet, his reply threw up more questions than it answered. In another response, Timms quoted from current training for assessors applying the SCC.
Existing DWP guidance on severe conditions criteria: cause for concern
The Canary hasn’t been able to obtain the most recent training that Timms was referencing. However, we dug up a 2017 DWP severe conditions training guide with the exact wording he quoted. It’s a Maximus-branded distance learning for WCA severe conditions during face-to-face assessments. This says about meeting the SCC that:
One of the following Functional Support Group (LCWRA) criteria must be met:
• Mobilising 50m.
• Transfer independently.
• Reaching.
• Picking up and/or moving.
• Manual dexterity.
• Making yourself understood.
• Understanding communication.
• Weekly incontinence.
• Learning tasks.
• Awareness of hazards.
• Personal actions.
• Coping with change.
• Engaging socially.
• Appropriateness of behaviour.
• Unable to eat/drink/chew/swallow/convey food or drink.
On top of this, a claimant must then meet four further criteria for that descriptor(s). These are:
- The level of function would always meet LCWRA.
- A condition is lifelong, once diagnosed.
- There’s no realistic prospect of recovery of function.
- And finally, that the condition is unambiguous, in other words, has a recognised medical diagnosis.
It gives some examples of conditions that might meet these criteria, and those that might not. Further to this, it provides a series of key guidance points. And, it’s among these that the problems with Timm’s assurances start to mount up for people living with severe ME.
Severe ME patients and the SCC
In theory, this should all apply to people living with severe or very severe ME. This is not least given ‘severe’ is in the name – and for good reason.
And indeed, one part of the DWP’s guidance does look like it should account for severe ME patients. Notably, it details an example of a person with severe multiple sclerosis in which it says they:
may still have some fluctuation in their functional ability – but their fluctuation is between severe and very severe restriction. For example most of the time they are restricted to mobilising in the house, but during a period of further flare up the person may be bed bound.
However, in practice, this might not be the case. Notably, there are statements in the ME WCA training that could potentially prevent severe ME patients meeting some of the other criteria.
In order to qualify as a SCC claimant, Criterion 2 requires that they have a “lifelong condition, once diagnosed”.
The DWP’s severe conditions guidance stipulates in relation to this that:
where a claimant has refused an intervention advised by their clinician that may improve function, the DWP advice is that the severe conditions prognosis should not apply as the person’s circumstances may change at a later date, altering their views on this.
Biopsychosocial model endangering severe ME patients, again
This becomes problematic in the context of the DWP WCA ME training. In particular, the prognosis section states that:
The majority who make some degree of improvement but eventually tend to stabilise. They then follow a fluctuating pattern with both good and bad periods of health.
It follows this with the assertion that a “significant minority remain severely affected”. Of course, it fails to mention that “significant minority” is actually at least 25% of ME patients. So, the issue is that the training downplays the fact that many patients do indeed experience that lifelong severity.
Juxtaposed with the key biopsychosocial tenet implying false illness beliefs, and the implication might be that patients can “improve function”, if they follow clinician advice. In other words, this framing means that assessors might not consider severe ME patients as having a lifelong condition.
This is despite the fact there’s no cure, and that NHS ‘care’ at best, simply stabilises their condition. More often than not, it instead abuses and gaslights severe ME patients into further dangerous deterioration. And alarmingly, the WCA ME training ignores this too. It claims that “continued deterioration” is “unusual” in ME patients, when in fact for many, it’s quite the opposite.
The section on Cognitive Behavioural Therapy (CBT) cements the damage. Largely it sums up points from the NICE guidelines. Despite this, the fact it features CBT under “rehabilitative therapy” and omits the NICE point about it not being curative could leave this open to abuse.
No time for improving care for people with ME, but plenty for benefit cuts
Of course, it’s the standard of misrepresentation that ME patients might understandably expect from the DWP. After all, this is the very same department that part-funded the flawed PACE trial. The junk science study has inflicted incalculable harm on people living with ME for more than a decade.
After months of rhetoric maligning chronically ill and disabled benefit claimants as taxpayer-draining malingerers, it’s also nothing surprising from this Labour Party government either. The cuts have a clear objective: to deny social security to as many sick and disabled people as possible. It invariably would have expected ME patients, and others with under-recognised fluctuating conditions, to be caught up in this.
And as Labour rams through its brutal benefit cuts, it has found little time to improve care for people with ME. The very weekend ahead of its first vote to ruin the lives of hundreds of thousands of chronically ill and disabled Universal Credit claimants, the government delayed the publication of the now inordinately long-awaited ME Delivery Plan.
By the Canary’s count, this marks the fifth such delay since the Tories launched work on this in May 2022. To say it demonstrates an astonishing lack of political will to deliver for ME patients would be an understatement. Rushing through crude cuts and revising them mid debate? Viable. Publishing a PLAN three years in the making? Asking too much.
DWP doing what it does best to ME patients
Meanwhile, Labour’s vehement fixation on the post-pandemic surge in claims has persistently refused to recognise the obvious. This is the simple fact that these will massively correspond to a predictable rise in post-viral illness. Since as many as nearly half of long Covid patients fit the diagnostic criteria for ME, the cuts were always – at least in part – an attack on our long neglected and abused patient community.
Now the revelation of the atrocious ME training for WCA assessors is more evidence of why the DWP’s welfare has so poorly served ME patients for so long. The imminent passing of the vicious Universal Credit Bill likely spells only more bad news for patients with fluctuating conditions.
When it comes down to it, the government either wants chronically ill and disabled people working, or it wants us dead. By now, it should be painfully obvious to our patient communities, the DWP’s violence was always a deeply-embedded feature, not a flaw – and that’s not about to change.
Featured image via the Canary
This post was originally published on Canary.