Today – Monday 22 July – is the final day to respond to the previous Tory government’s controversial consultation on key disability benefit reforms. This included the Conservative-led Department for Work and Pensions (DWP) notorious plans to replace the Personal Independence Payment (PIP) with a voucher scheme.
Multiple disability rights nonprofits have repeatedly urged the new Labour government to scrap the reforms.
Now, a chronic illness community group has spoken out against the “inaccessible” consultation and its sweep of cruel proposals. With just hours to go before it closes, the COVID Support Community has penned an open letter to the new Labour government to voice their considerable concerns on the problematic consultation and its alarming reform ideas.
DWP PIP reforms: controversial consultation closing
As the Canary previously wrote:
Under the previous Conservative Party government, the DWP launched plans to overhaul the benefits system. When it came to PIP, the then Tory-led department put forward proposals to cut the number of claimants and implement new supposed cost-saving alternatives.
Significantly, this included Sunak’s notorious plans to replace the disability benefit with a voucher scheme.
Moreover, in the DWP PIP consultation:
Besides the voucher scheme proposal, the DWP put forward similarly ill-thought and punitively restrictive options. This included a catalogue or shop scheme, with approved items. As well as this, it suggested possible a receipt-based system.
The Canary has consistently pointed out a number of glaring issues with the proposals. Specifically, these concern how they will cruelly impact disabled and chronically ill people.
Now, a community group representing long Covid and myalgic encephalomyelitis (ME/CFS) patients has shared its efforts to hold the new Labour government to account with the Canary. The COVID Support Community operates an online support forum for individuals living with these devastating chronic illnesses.
The two post-viral onset multi-system diseases share many pathological overlaps. In fact, studies have already shown that over 50% of people living with long Covid meet the diagnostic criteria for ME. Invariably then, both chronic illnesses therefore share a suite of devastating symptoms.
This includes cognitive dysfunctions – which some patients living with the post-viral diseases typically call brain fog. As it says on the tin, this is an umbrella term for a range of cognitive impairments, such as memory, language and information-processing, and speaking difficulties. Given the multitude of cognitive symptoms associated with both conditions, the COVID Support Community began by highlighting that the consultation was “inaccessible and difficult to engage with” for many patients with these.
As well as this, the main feature of ME, and many with long Covid is post exertional malaise (PEM). This involves a disproportionate worsening of many of the body’s systems, and resultant symptoms after minimal physical, mental, social, or emotional activity. For this reason, the letter therefore expressed how:
Consequently, the most vulnerable among us, including children and those with the most severe conditions, reported being unable to respond at all, therefore, we are speaking on their behalf too and understand this.
Consultation full of ‘leading, discriminatory’ questions
As well as the restrictive nature of the consultation, the open letter also slated the “leading, discriminatory” questions. Crucially, it argued that many of these, the DWP had based on:
misconceptions and false assumptions, particularly concerning individuals with chronic health conditions such as LC and/or ME/CFS.
Among them for instance, it highlighted the consultation’s presumptions that:
- All people have access to healthcare professionals or a diagnosis
- That there are clear medical diagnosis pathways and treatments
- Medical professionals treat patients equally, and offer compassionate care
People living with ME, and long Covid in more recent years know that in each of these – it is simply not the case. Notably, a pervasive lobby of medical professionals have pushed the idea that the disease is psychological – in other words, all in peoples’ heads.
The result has been what a parliamentarian has previously called one of “the biggest medical scandals of the 21st century”. For patients, this has meant stigma, abuse, gaslighting, and neglect from all sides. Family, friends, the welfare system, and healthcare settings have meted this out against people living with ME to horrendous, and sometimes even deadly effect.
As the DWP PIP consultation closes, today, the inquest into the death of 27-year-old Maeve Boothby-O’Neill begins in Devon. Daughter of Times journalist Sean O’Neill, Maeve lived with severe ME, meaning she was entirely bedbound, unable to eat or drink, and fully dependent on others for her care. In hospital, doctors denied her the correct feeding procedures that could have saved her life.
Meanwhile, as the Canary has previously reported, NHS hospitals have continued this appalling treatment of severe ME patients. Right now, one such patient is 23-year-old Carla Naoum. West Middlesex hospital is neglecting and abusing Carla, and as a result, her condition continues to deteriorate.
The reality then, is just as the COVID Support Community said. Critically, its letter stated how the consultation’s assumptions would:
discriminate against or disadvantage those who are too unwell to have been able to access care or diagnostics.
On top of this, it drove home how:
Essential equipment and services should be treated as a medication not a lifestyle choice.
Worsening health and causing distress
One of the issues it therefore highlighted was that the DWP PIP consultation’s emphasis on non-cash alternatives. Specifically, it showed how this could massively discriminate against people living with conditions like long Covid and ME.
The Letter stated that:
The dearth of research means that evidence-based treatments are extremely limited or non-existent, and no cure is currently available.
This is relevant when considering how we would access treatments, services and care, when none have been approved due to the factors described above, especially within closed systems such as vouchers. We have a complex multisystem condition that requires individual management and support that is unlikely to fit neatly into categories. Cash payments allow us to manage our conditions proactively based on our unique needs.
Additionally, it also noted a number of issues with the proposals involving reimbursement. For example, the letter pinpointed how this would disproportionately impact poor claimants. In short, those who might not be able to afford the upfront costs of treating or managing their medical condition.
Largely, it reminded the new Labour government that PIP is a disability benefit. That is, PIP is precisely intended to redress the additional costs of living with medical conditions and as a disabled person in a society designed for non-disabled people. In other words, it’s about making things more equitable. It’s there to help disabled and chronically ill people afford treatment, medication, and aids that improve their health. In theory, though of course, not always in reality, this would make it more possible for them to live fulfilling lives.
As such, it presented a number of these extra cost burdens for people living with long Covid and/or ME. These include things like higher costs of everyday essentials. This would be things like electric and heating bills, food deliveries, and increased transport costs for instance.
DWP PIP not fit for purpose
What’s more, the letter detailed how it isn’t solely the Tories’ controversial new proposals for DWP PIP that has caused harm. On top of underscoring the multitude of issues with these, and the consultation itself, COVID Support Community also pointed out the DWP’s current PIP is not fit for purpose.
Members of the forum articulated the immense distress and health toll the DWP PIP process has taken on people living with long Covid and ME. The letter included a number of these testimonies. One expressed how they:
found the entire PIP process absolutely excruciating. Severe cognitive dysfunction made it extremely difficult to talk, find words, or articulate myself. Rather than believing doctors’ reports, it felt like the onus was on me to explain my invisible little understood complicated condition right when I was struggling to communicate basic English. The pressure to feel understood and believed was overwhelming, and the process was labour-intensive and emotionally draining. The three-hour phone call was gruelling and resulted in a crash that lasted 3-4 weeks. I’m very grateful my application was accepted, especially since I’ve heard others weren’t as fortunate.
Another, indeed less fortunate claimant said that:
PIP process has impacted on my mental wellbeing and caused my health situation to worsen overall. I have had to go to tribunal despite overwhelming evidence causing distress and taking me away from my ability to focus on my recovery.
Chronically ill community make ‘sacrifices’ to share their views
Overall, the letter set out how the current DWP PIP system, and the Tories’ plans for reform falls short. The group put forward a series of recommendations. These were borne out of members’ personal experience of living with these devastating chronic illnesses. On top of this, it drew on the challenges they encountered trying to access the UK’s social security set up.
Of course, the nature of both conditions meant that the open letter came at great personal health risks to its organisers. Coordinating authors signed off the letter emphasising this:
we would like to acknowledge the immense effort and energy it took for members of the LC and/or ME/CFS community to participate in discussions and compose this letter, particularly given our energy-limiting conditions. Advocating for our needs is incredibly challenging given our symptoms including cognitive dysfunction and fatigue. This reflects our deep passion for the critical support PIP payments provide in managing our conditions independently and prioritising our needs.
Therefore, the COVID Support Community called on the Labour government to recognise the “sacrifices made” to share their views.
To date, new Labour DWP ministers have yet to confirm the government’s plans for PIP. However, a Mirror article reported post-election that Labour insiders had hinted the government would review the consultations responses.
Given all this, it’s long past time Labour did what it promised in its manifesto. Specifically, it pledged that disabled people’s “views and voices will be at the heart of all we do”. If that’s truly the case, it would now unreservedly do away with this flawed, deeply discriminatory consultation, and the Tories’ dangerous PIP plans to boot.
You can read the full letter, with its recommendations for the new Labour government here.
Feature image via the Canary
