DWP scheme sending people with ME to coaching organisations for neurodivergence

The Department for Work and Pensions’ (DWP) Access to Work (AtW) scheme has been referring people living with myalgic encephalomyelitis (ME) to organisations classifying the condition as a form of “acquired neurodivergence”.

Of course, ME is already a much-misunderstood disease, and it can be extremely difficult for people to get treatment. And, this shocking revelation comes as the DWP try to force disabled people into work, and strip back funding for AtW – making it even harder for disabled people to stay in work.

The implications for people living with ME could be catastrophic.

DWP Access to Work: ME as ‘acquired neurodivergence’?

A person living with ME has approached the Canary to whistleblow over their alarming experience engaging with AtW. Notably, DWP staff administering the scheme had directed them to organisations misrepresenting the condition as a form of neurodivergence.

Now, after investigating further, the Canary has discovered a number of AtW coaching providers specialising in support for neurodivergent employees are promoting their services for people living with ME.

The Canary has identified at least three peddling this:

• Creased Puddle
• Genius Within
• No Drama Llamas

Of course, ME is not a neurodivergent condition. The World Health Organization (WHO) has long recognised it as a neurological disease affecting the nervous system.

Despite this, these organisations have still been actively peddling the idea that ME is a type of “acquired neurodivergence”. This dangerously trivialises the lived reality of employees with ME. It’s also likely impacting the sorts of support the AtW scheme is prepared to offer them.

And this misrepresentation of the extensively debilitating condition is undoubtedly contributing to the punitive ‘back to work’ climate and vilifying culture rife at the DWP as well.

Out with the old psychologising, in with the new psychologising

The above organisations specialise in neurodivergence and seem to have started expanding their services to people with ME around 2020 and 2021. The reasons for this are likely twofold.

Firstly, this coincides with the rising cases of long Covid – many of which will meet the diagnostic criteria for ME. In a 2021 Returning to Work briefing, Creased Puddle’s CEO Caroline Turner said:

Our expertise lies in developing and supporting neurominorities, yet with COVID-19 we are seeing our services extending to other conditions such as Chronic Fatigue, Fybromyalgia and Depression.

Meanwhile, a webpage Genius Within created in September 2020 features a page on ‘Chronic neurological conditions’ where it classifies multiple sclerosis, “chronic fatigue syndrome”, and long Covid as a ‘neurotype’ called ‘acquired neurodivergence’.

The second reason for their emergence into employment support for people with ME could revolve around the 2021 updated National Institute for Health and Care Excellence (NICE) guidelines.

This finally dismissed the biopsychosocial lobby’s junk science around treatments psychologising ME. Of course, a core part of these psychosocial-wedded clinicians’ evidence base had been the disgraced PACE trial. The DWP had part-funded this – with an obvious agenda of trivialising the condition in order to force chronically ill patients into the low-waged capitalist workforce.

As the lobby’s grip on the condition’s consensus has gradually waned, it has taken new rebranding approaches to continue harmful psychologising treatments. While they can no longer outright label ME as psychological, ‘acquired neurodivergence’ could open up a new avenue to promote psychological interventions.

Acquired neurodivergence: not a new term

That said, the idea that ME is a form of acquired neurodivergence does not appear to be a new phenomenon. A 2017 report that the British Psychological Society (BPS) launched at the All Party Parliamentary Group (APPG) on Psychology categorised ME amid a group of neurological conditions it described as “acquired neurodiversity”*.

The report’s core thrust was largely about adaptations and interventions employers could put into place to support neurodivergent employees.

But the interventions involved some problematic suggestions for employees with ME, including:

• Formal coaching for “executive functions, communication skills, stress management and understanding own abilities.”
• Vocational rehabilitation and Individual Placement and Support (IPS).

In other words, all approaches that psychologise support – and with histories of harm to boot.

Perhaps most significant however is the fact that Genius Within’s founder and CEO Dr Nancy Doyle co-authored the report. And now, her organisation is among the handful pushing this ‘acquired neurodivergence’ paradigm. The support it offers to employees with ME is coaching for:

• Stress
• Time management
• Organisation
• Memory
• Listening and taking notes
• Verbal communication

So it’s evident Doyle’s approach has little changed since the 2017 BPS report. Because clearly employers simply need to coach the chronic multi-systems dysfunctions out of their employees with ME.

DWP: no training for Access to Work staff on ME

Through a Freedom of Information (FOI) request we sought to find out what training the DWP provides to its staff administering the AtW scheme.

The DWP has training guides and condition-specific insight reports for assessors overseeing Personal Independence Payment (PIP). It also separately holds these for Universal Credit’s health element. We have however highlighted some glaring issues with these.

But when it comes to AtW, no such training or guidance for staff appears to exist. The DWP responded to the FOI that:

the information you requested is not held by this Department.

This is concerning enough in itself. However, a recent revelation during a Public Accounts Committee (PAC) inquiry session on AtW highlighted that DWP staff making decisions around the scheme are not medically trained. Responding to a question on this, DWP director general on services and fraud noted only that there are doctors in the department that staff can go to for “advice”. Of course, the implication is that there’s no expectation on AtW staff to do that.

In essence, DWP AtW employees with no training, guidance, or knowledge around the condition are deciding what support people with ME need. And this will undoubtedly be the case across the board for all disabilities and health conditions.

DWP directing people to these organisations deliberately?

The Canary shared its findings with the ME Association. On reading them, honorary medical adviser to the ME Association Dr Charles Shepherd told the Canary:

The ME Association is aware of a number of people who have some form of neurodivergence as well as having ME/CFS. However, neurodivergent conditions are increasingly being diagnosed – so there are bound to be some people who have both conditions, and there is no research evidence to indicate that the two conditions are linked.

It is not therefore correct to classify ME/CFS as an acquired neurodivergent condition. Incorrect classification of ME/CFS as a neurodivergent disorder could also lead to inappropriate forms of symptom or support management being advised.

Overall, ‘acquired neurodivergence’ seems to be the new ‘psychosomatic’ for ME patients.

Where previously, the DWP benefitted from the trivialisation of ME as a mental health condition, now it can weaponise this idea that its neurological symptoms constitute neurodivergence developed from chronic illness.

The consequences of this are obvious. Because in turn, it means the government’s attack on neurodivergent people not in work will target people with ME too.

Set against its narrative on the so-called post-pandemic rise in neurodivergent people claiming health benefits and it’s clear where this leads. If the foremost scheme improving workplace accessibility for disabled employees is directing people with ME to organisations that treat their condition in neurodivergent terms, it also doesn’t have to provide the more expensive support workers, job aides, and workplace accommodations that people with ME actually need to re-enter and/or stay in employment.

That all likely suits a DWP that’s sneaking through devastating cuts to AtW behind closed doors. But overall, it’s risking coercing people with ME into work without the support they need to protect their wellbeing.

So once again, the department is failing people with ME. However, that will come as little surprise to a patient community it has long gaslighted and pushed to the margins.

Featured image via the Canary