PIP in a pandemic

I’d never heard of PIP before I realised I was eligible – at least 3 years, I might add, after I should have made a claim. Only after I’d begun the application process did I begin to tune into the conversations about unfair and discriminatory assessments. Suddenly it was all I was hearing or talking about. These conversations weren’t new in 2017, but they had been heightened by the UK court’s ruling that PIP was “blatantly discriminatory” against people with mental health disabilities. This unlawful discrimination had been permitted under the watchful eye of the same Tory government currently in power.

I say that, to say this: pre-pandemic, PIP assessments were the stuff of nightmares for many people, literally, and particularly for folks applying because of mental health disabilities. The legacy of discrimination is still fresh in our minds, and despite the 2017 legal ruling it still appears to be very much alive.

Personal Independence Payment is independent of all other benefits. It is there to support people with the extra costs of living with a disability, so that they can maintain their independence. They are statutory entitlements. I don’t mind telling you that my PIP has allowed me to access therapeutic groups, activities and spaces that otherwise wouldn’t have been affordable – often in the face of very little and inconsistent psychological or social support from the NHS. It has been life changing, perhaps even life-saving. (Figures from November 2019 show that 3.8 million people receive PIP/DLA.)

We have already written several blogs about the lack of psychological support during COVID19, and the negative impact this has had on people’s wellbeing. But what about the financial support that many of us depend on? How has PIP been affected by the pandemic? And what has this meant for those who rely on this financial support for their independence? We asked our Mad Covid community, and this is what they told us. Some names have been changed to protect people’s identities. 

Assessment delays and uncertainty. 

If you’ve made a claim for PIP yourself, or helped someone you care about going through it, you’ll already know that sinking sense of dread when brown envelopes fall through the letterbox. You’ll know the anxiety of having to sit down and quantify exactly how ill you are, how much support you need, how often you aren’t able to X, Y,  Z. You’ll know how shit it can make a person feel. Having this process drawn out and hanging over your head for longer than is absolutely essential is damaging and cruel. As Drew and B told us:

“My PIP was due to be reviewed in July. Not sure when it’s going to happen. Don’t like that feeling of not knowing when the brown envelope will drop through the letterbox…” – Drew

“Still waiting since I filled out my assessment form at the beginning of the year… it’s hanging over me for sure.” – B

As early as November 2019 the DWP was experiencing severe delays processing PIP assessment forms. My own ‘how your disability affects you’ form took nearly 3 months to be processed. It was finally acknowledged in January 2020 and 9 months later, in September, I was given a date for assessment. Other people we spoke to also experienced long delays for assessments, as well as extremely poorly managed communication from assessment companies. 

Daisy told us about her experience: “I had an in-person assessment booked in when the rules changed because of covid…. there was a bit of waiting around in limbo, which to be honest was a bit of a relief, since I didn’t immediately have to go to an appointment and I carried on getting PIP as normal. Then I had a phone appointment. In a very DWP move, they managed to cancel the first appointment over an hour after it was supposed to start, which had me anxiously waiting by the phone worrying what was wrong – if our signal wasn’t good would they just count it as a non-attendance? But no, it was their fault so no penalty for them. Second time, same again, sat anxiously by the phone, but at least they rang this time… They received the report from the appointment in June and said I would hear from them within 6 weeks about their decision. I still haven’t heard anything.”

@rosiefolksongs told us: “They called me up for my phone assessment in April with no warning at all… Another [friend] got a letter saying they’d rearranged his assessment, but [he] never got one telling him about it in the first place.”

And Jamie told us: “I was told I should have an assessment by the end of May but it actually didn’t happen until the end of August.”

These delays cause considerable stress, anxiety and uncertainty about the future. Delays mean that individuals cannot commit to therapeutic activities or resources that are essential for them – particularly in light of limited access to psychological or social support during Covid19. 

People claiming PIP for the first time (who did not have existing claims extended), have also had to shoulder the financial burden associated with their disabilities without the support they are entitled to – whilst also dealing with additional costs surrounding Covid19 and potentially 80% or less of their regular income. This is unacceptable. It is likely to leave some people in a position where they are unable to properly manage their conditions, or even vulnerable to accruing debt. 

Charlie told us: “I’m not sure if it was delayed because of COVID specifically but I had a seven month wait to be assessed, for the duration of which I was struggling financially and had to go without the things PIP is supposed to be for – extra costs involved in illness/disability, so there were things I wanted to try for my chronic pain, things that might have helped me manage my mental health and then just basic things like dressings and antiseptic for self harm [that] I couldn’t buy.”

Over-the-phone assessments. 

The people we spoke to told us categorically that they did not feel understood during their phone assessments. The assessors lack of mental health skills, experience or training stood out as a problem which seemed to have impacted many of their experiences. Activists and charities have been raising concerns about this issue for years. Although the problems is not new, over-the-phone assessments have affected some of the ways in which it is experienced.

In March 2017 the charity MIND conducted a survey of over 800 people with mental health problems who had experience of claiming PIP- just 8% felt that the assessor understood the impact their mental health had on them. The MIND report specifically highlighted concerns around the skills and experience of assessors, as well as reports of ”poor decision-making and inappropriate treatment during assessments.”

“We heard many individual examples of assessors lacking sensitivity in the way they conducted the assessment. Examples included not allowing people time to take breaks or leave the room, visible discomfort when talking about mental health, and insensitive language and lines of questioning.”

This is clearly an ongoing issue, as Charlie told us; “The biggest problem by far was that the assessor clearly had no training in mental illnesses. Every time I spoke about my OCD she would laugh, at one point she said “that’s so cool” in response to me describing a compulsion and the thoughts behind it.”

Assessing someone with a mental health disability requires knowledge and experience to know what the appropriate (and very sensitive) questions to ask are, to know how to ask them and the appropriate language to use, as well as the ability to pick up on visual or verbal, and sometimes very subtle, signals (symptoms). This is even more important if the individual being assessed is at home, potentially unaccompanied. Inappropriate questioning and assessment practices can be extremely triggering and distressing for some people. 

Without the specific skill set that’s required, in the past assessors have often included informal visual observations as ‘evidence’ in their reports – despite the fact that these observations are seldom discussed and therefore assessors do not know if they provide a representative picture of someone’s mental health or how it affects them. Whilst this humiliation has temporarily paused due to Covid, for some people it has meant that assessors assume the individual is fine simply because they can’t visually observe signs of anxiety or distress. 

Jamie told us how the assessor made inaccurate assumptions about them and ignored information that Jamie had shared:“The assessor also made various comments about me that aren’t accurate because he couldn’t see me e.g. he said I wasn’t anxious on the call even though I was rocking back and forth using fidget toys, and had my aromatherapy diffuser on while on the phone to him (these are ways I regulate my emotions and reduce feelings of anxiety). And I even said to him I felt really anxious, and he didn’t include that!”

Daisy told us that she felt unsure the assessor would understand how her disability affects her without being able to see her, and provided additional evidence from her partners over the phone to support her with this: “I’m autistic and find phone calls difficult, it’s even harder to connect with people than in person. But it did mean that I could have the appointment at home, surrounded by familiar stuff, and with both of my partners there. It’s really hard to know what they thought of me. Obviously they couldn’t see my unwashed hair, or whatever fidgeting I was doing, so I don’t know how they will judge that, but my partners tried to describe how I was behaving.”

We are very pleased that Daisy’s partners were able to provide her with support and evidence during her phone assessment, however we know from our previous blogs that many people with long-term mental illnesses cannot access their usual support, or any support whatsoever, due to Covid19. These people, like Jamie, are vulnerable to inaccurate assumptions being made about them. There is no excuse as to why appropriate and accurate assessments can’t be conducted over the phone if, and only if, assessors have the proper skills, experience and training. 

A further concern with over-the-phone assessments is the inability to have assessments audio recorded, due to GDPR regulations with assessors working from home. But what about safeguarding the vulnerable people who are making a claim? The right to having an assessment recorded is for everyone’s safety, and to ensure accuracy and transparency. We have already heard from people, such as Jamie (above), who told us that important information was not recorded in the assessor’s report. 

@rosiefolksongs also told us: “One friend, they explicitly lied on her report and denied her appeal.” 

These reports are deeply concerning. Assessment reports are legal documents, they are not for untrained assessors to take a punt passing casual judgements. The impact of poor assessments and inaccurate reports are profound – it affects people emotionally, financially and socially for months on end, if not years. Audio recording is one of the only ways people making claim can protect themselves against these experiences – they can provide vital additional evidence for appeals where the assessor has failed to record important information, or outright lied. 

Jamie also told us that they asked for reasonable adjustments to be made for their assessment, relating to their hearing impairment and PTSD, which were not met:I’d specifically requested that the assessor have experience in autism and mental health as they’re my main needs. I also told them I needed to speak to a female assessor because of medical PTSD involving male healthcare professionals. I’d also explained that my hearing impairment makes it difficult to access phone calls, and that I found it more difficult to understand people with accents. I was allocated to a male physiotherapist with an Australian accent, so they clearly didn’t make any adjustments for my disability or access requirements.”

If assessment companies are not able to make reasonable adjustments because they have been impacted by Covid19, then they shouldn’t be booking assessments with individuals who require such adjustments until they are able to do so. The duty to provide reasonable adjustments is stated clearly in the Equality act. It is a right protected by law to ensure equal opportunity is afforded people who face significant disadvantage compared to those who do not share their disability. The disabled community are not a monolith. Specific disabilities require specific adjustments. Failure to provide appropriate adjustments should be a PR disaster and point of absolute disgrace for these companies- but we aren’t holding our breath. 

Mandatory Reconsiderations and Tribunals. 

It’s impossible to know definitively whether over-the-phone assessments have made a difference to individual outcomes, however the people we spoke to certainly felt that their outcomes were affected by changes related to Covid19. 

Jamie told us how the assessor’s inability to observe them led to inaccurate information and a wrong decision – they are now waiting for a response from their mandatory reconsideration:

Yes, I do think the outcome was affected by the decision to do a telephone assessment. There are many aspects of my presentation that you can only observe face to face, such as my lack of eye contact, poor understanding of body language and social conventions, stimming when anxious by rocking back and forth, using sensory/fidget toys, repetitive hand movements, using deep pressure therapy by sitting with my legs tucked under me or putting a heavy bag on my lap… When I spoke to the DWP in late August, they said to expect to wait at least 10 weeks between submitting your MR and getting a decision, I don’t know how that compares to pre-covid times. I’m expecting it to be at least 9 months from my original decision to even being given a tribunal hearing date.”

Charlie, who had to go through a mandatory reconsideration before being awarded their entitlement, told us how difficult and humiliating this was for them: 

I found the mandatory reconsideration process really humiliating, having to justify how unwell I am is really unpleasant and it meant having to have essentially another phone assessment where they asked questions I’d already answered. Having to read their long invalidating letter and convince them I’m iller than they thought was just really draining and humiliating and I wouldn’t wish that process on anyone.”

They added: “I don’t think I would have had it in me to go to a tribunal if they had rejected my mandatory reconsideration to be honest. That sounds like such a gruelling process, I just couldn’t do it.”

Daisy, who has been waiting since June to hear about a decision from their assessment, is already worried and anxious about what the outcome will be and anticipating having to challenge it: 

“I’m worried about having to challenge/go to tribunal in person, as people are back working in offices but I still don’t think it’s safe (as evidenced by the uptick in cases at the moment!). I’m worried I’d have to risk my health (both my girlfriend and I are in “at risk” groups) to challenge an incorrect decisionIt’s already an incredibly anxiety-inducing process so it’s hard to say if it’s generally any worse now. However, the waiting times being longer is definitely worse, and worrying about having to go to court in public is also worse.”

Finally, Alex told us that the DWP unexpectedly u-turned on the outcome of their mandatory reconsideration before the case reached Tribunal: 

“The DWP decided not to take me to tribunal for appeal. Instead they phoned me and awarded me enhanced care and standard mobility, even though I had not sent in any further info. [I] Reckon that was because of the pandemic. So for me the pandemic went in my favour as their backlog probably made them think it would be easier to just give me the award. I doubt they would have won [the] tribunal – the original assessment & mandatory reconsideration were very poor.”

It is good to hear that the DWP took steps to prevent unnecessary delays awarding Alex their PIP entitlement, however this has not been the experience for most. Furthermore, it’s unclear why Alex’s mandatory reconsideration was initially rejected, compared to how seemingly straight-forward it was to u-turn a few weeks later, without the DWP having received any further information. The idea of the decisions being made on a whim, or based on the luck of the draw of who looks at the case, is not comforting. It is unjust and unfair.

The process of applying for PIP puts people through tremendous stress, anxiety and uncertainty. It can tangibly make things worse even at the best of times. Having to go through this process when you are already under acute stress due to Covid19, alongside scaled back or non-existent psychological and social support, is likely to be too much for some people. 
We call on mental health charities to speak up on these issues and put pressure on the government to prevent harmful delays and incorrect decisions. Disability assessments must be accessible. Failures by assessment companies to comply with the Equality Act should be investigated at the highest level.

Written by Ellie Bradford, a.k.a Luna Tic

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. We ask that you seek our permission before you use any of our material – this includes researchers who want to harvest our data for analysis!

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