A medical news website has revealed that NHS England has removed targets for the treatment of long Covid. This has rightly concerned many people living with the illness. However, there’s potentially more to this story than meets the eye.
Ultimately, when other events are factored in, it seems that people with long Covid may end up at the sharp end of medical professionals psychologising their illness. They may also fall victim to successive governments’ obsession with forcing chronically ill and disabled people back to work. Moreover, this is worryingly reminiscent of the treatment of another group of patients with a similar illness – myalgic encephalomyelitis (ME).
Long Covid: NHS England cutting targets
Long Covid is a post-viral illness. The British Heart Foundation says it is:
a term to describe the effects of Covid-19 that continue for weeks or months beyond the initial illness.
It notes that the most commonly reported symptoms include:
- fatigue (54%)
- shortness of breath (31%)
- loss of smell (23%)
- muscle ache (22%).
Long Covid is similar to the disease myalgic encephalomyelitis (ME). The onset of ME is often after a virus (like long Covid); a lot of the symptoms are similar in both illnesses and so far, there is not a full understanding of why some people get these diseases – nor no known cures for them, either.
Now, leaked documents show the NHS’s plans for long Covid. As the Health Service Journal (HSJ) reported, NHS England has scrapped some targets for 2023-24 which were in place for 2022-23. HSJ said this included:
a target to increase the number of patients referred to post-covid services, who are then seen within six weeks of their referral.
Already failing patients
In 2022-23, NHS England set its long Covid targets to:
- increase the number of patients referred to post-COVID services and seen within six weeks of referral.
- decrease the number of patients waiting longer than 15 weeks, to enable their timely placement on the appropriate management or rehabilitation pathway.
NHS England also claimed it would spend £90m on this. However, as the Guardian reported in October 2022, England’s 90 post-Covid clinics were barely reaching the number of patients they needed to who were living with severe forms of the disease:
More than 60,000 people in England had a first assessment for post-Covid syndrome in an NHS specialist service between July 2021 and August 2022.
But the latest estimates released by the Office for National Statistics (ONS) [in October 2022] show that about 277,000 long Covid sufferers in England report that the disease has limited their day-to-day activities “a lot”. These are the people that experts would expect to be referred for an assessment; however, the numbers who have been seen are far lower.
Moreover, the Guardian also noted that:
An average of 4,000 people have attended one of these clinics each month between July 2021 and August 2022 for a first review of the symptoms. A third of them had to wait more than 15 weeks before that first review
So, long Covid services were already failing countless patients – even with NHS England setting targets, albeit vague ones. Now, it seems the health body has abandoned, as one Twitter user said, any “pretense” of trying to improve care for this group of patients.
Rowland Manthorpe is a Sky News journalist who lives with long Covid. He tweeted regarding the HSJ story that:
I have confirmed independently. A source tells me long covid is being “deprioritised” by the NHS
For people living with ME, this is sadly familiar. The Canary has documented these patients’ struggles to get medical professionals to believe their illnesses are real and not psychological – let alone receive appropriate treatment. As we previously reported:
funding for this chronic disease has been scant.. between 2007 and 2015, UK funding (including government-based) per patient, per year was just £4.40 – compared to £82.20 for multiple sclerosis. The government itself directly funded a mere £558,333 a year between 2012 and 2017 for ME research. Meanwhile, people with ME are disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
However, there are more warning signs for long Covid patients than just NHS England’s approach to long Covid targets.
Here we go again?
At the same time as it’s deprioritising long Covid services, NHS England has appointed three new non-executive directors to its board, one of whom is psychiatrist Simon Wessely. Some people believe these two events are not unconnected. One Twitter user quote tweeted Manthorpe’s comment about long Covid targets while also noting NHS England’s appointment of Wessely:
"NHS England has added a wealth of clinical expertise and experience to its board with the appointment of three new non-executive directors."
— Matthew Dalby (@MatthewJDalby) January 5, 2023
Wessely has advocated for using cognitive behavioural therapy (CBT) and graded exercise therapy (GET) to treat people living with ME. He was also linked to the now-discredited research that claimed these treatments worked when they didn’t. Wessely also, in the past, lobbied the government to try and stop ME from being classed as a neurological, not psychiatric, illness. He did the same with Gulf War syndrome. The point being that he has a history of psychologising what are physical illnesses.
It’s currently unclear what influence Wessely will have as a non-executive director of NHS England. However, his psychiatric approach to physical illness, coupled with his new job, may indicate the path the NHS is heading further down – and not just regarding long Covid. Already, part of the treatment for long Covid is psychiatric, specifically aiming to:
reduce the psychological impact of the condition on the patient by increasing their understanding of the impact of psychosocial factors (eg interpersonal factors, emotional dysregulation, fixed or limiting beliefs)
“Limiting beliefs” essentially means that psychiatrists think chronically ill people’s state of mind regarding their illness stops them getting better. In the case of ME, this is not true – and could be the same for long Covid. However, Wessely has prevously pushed the idea that ME was based partly on “false illness beliefs“. Therefore, his appointment as an NHS non-executive director has concerned some people. There has already been evidence of medical professionals not believing people have long Covid – despite what NHS England guidelines state.
Further to all this, something else ties into Wessely’s appointment and NHS England’s deprioritising of long Covid.
Back to work
NHS long Covid guidelines already have occupational health as a central part of treatment. They state:
Occupational health support and vocational rehabilitation are a core component of rehabilitation to support individuals with long COVID to return to work sooner and remain in work. Employers need to make reasonable adjustments for people with long COVID to allow them to return to work safely.
The potential with NHS England deprioritising long Covid treatment is that patients will end up with primary care practitioners offering CBT – which some trusts already do. Moreover, the cheaper version of this – called ‘behavioural activation‘, is already being trialled. As is the case with ME, CBT/talking therapies are cost-effective for the NHS, so it would be of little surprise if it pushed them for long Covid, too.
Now, as the Canary has reported, the government is making a further drive to push chronically ill and disabled people back to work. The Department for Work and Pensions (DWP) and NHS are, according to the Times, looking for:
ways to incorporate “work incentives” into some mental health treatment, and looking at ways that those with low-level conditions who could work can be helped back into work via treatment.
This is partly in response to 363,000 more chronically ill and disabled people being off work now than since before the coronavirus (Covid-19) pandemic. As the Canary previously wrote, this could include people with long Covid.
The end result?
So, we have the NHS downgrading long Covid treatment and appointing a psychiatrist with a history of the psychologisation of neurological illness to a top job, and the DWP trying to get more chronically ill people back to work. It’s unlikely there’s a Machiavellian plan, direct from the government, to try and force people with long Covid into work by getting the NHS to deny them treatment. However, the situation shows how actors of the UK state view chronic illness: part-psychological, not that bad, and something that can be sorted by psychiatric treatment so these people can get back to work instead of costing the ‘hardworking taxpayer’ money in benefit payments. As one psychologist previously told the Canary:
in recent years, policy has focused on returning as many patients to work as possible. This ‘back to work’ obsession places huge demand on patients to fulfil the neoliberal dream. One whereby health is linked to how much one can contribute to the public purse.
It seems that people living with long Covid may be next in line for the ‘back to work’ treatment. Denied robust treatment by the NHS, their illnesses may be psychologised, and then the DWP would step in to “incentivise” them to stop being ill and get a job. If this seems far-fetched, it’s not without precedent. The clinical trial into CBT and exercise therapy for ME, now discredited but adopted by the NHS for nearly 15 years, was part-funded by the DWP – leading one MP to claim:
One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.
Back in 2020, the Canary warned of long Covid patients eventually being treated like people living with ME. It seems that this might be rapidly becoming a reality.
The Canary asked NHS England for comment. It had not responded at the time of publication.
Featured image via NHS England – YouTube
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