PIP Assessments: Searching for understanding

I’m Jay. I’m 26 years old, and I live in Oldham, Greater Manchester.

I started my career at 18, working as an IT technician in secondary schools for five years. When I then went to university to study TV production, I started noticing how tired I was getting. I noticed big problems with my student job, working in bars to pay the bills.

Being diagnosed with chronic fatigue syndrome

In August 2019, when I was 23, I went to the doctor. I was diagnosed with chronic fatigue syndrome (CFS / ME) – a fluctuating invisible disability that severely affects how much energy I have.

On bad days, I’d start getting myself washed and dressed and find I could no longer do it. My partner or our flatmates would then have to step in and help. I would be too tired to keep going on my own. My bar job became impossible; I regularly had to call in sick twice a week. When I had the energy for my usual two or three shifts, I would need the rest of the week to recover.

Although I had to stop work, I needed the money. It was really hard to cope financially. I was 23 and away from home, yet I relied on my parents to pay for everything – rent, food, books, and transport costs. I couldn’t go out anywhere with my friends without ringing my parents: they were providing the funds, so I felt I had to get their permission for everything I did. I wanted to support myself, and I just couldn’t.

My first PIP application

With my condition clearly having a substantial effect on my day-to-day life, I decided to apply for Personal Independence Payment (PIP) – a disability benefit for people aged 16-64.

I had my first phone assessment for PIP in August 2020. It was with an assessor linked to a third-party company used by the Department for Work and Pensions (DWP). These people are usually healthcare professionals, yet their understanding seems to vary greatly. They certainly didn’t understand my condition.

Being rejected for PIP

I waited for a decision for nearly six months, and in February 2021, I was incorrectly denied the benefit.

The decision letter said I could wash, dress and cook unaided and drive a manual car – yet this is definitely not true all the time. My mobility was assessed only on my good days. The bad days were overlooked. Days when I’m reliant on my partner and flatmate to get up and have a shower and cannot stay awake for any more than short stints. The letter said I did “not sound in pain or fatigue [sic.] during the assessment”.

The letter did not consider a raft of evidence I’d submitted. Instead, it incorrectly claimed that “there is no evidence of any specialist input for chronic fatigue and pain.” The documents I’d given them included a letter from the NHS-run Liverpool Chronic Fatigue Service and medical evidence from Beacon Primary Care. These were not considered.

Most non-disabled people don’t really have to think about getting up: their morning routine is always the same. It’s not for me.

The spoon theory

With conditions like mine, fatigue levels are measured in spoonfuls. It’s known as the ‘spoon theory’. If I wake up with several spoonfuls, it’s a good day, and I can get a lot done. Suppose I wake up with one or two spoonfuls. In that case, I’ll soon stop being able to do anything independently – my partner or flatmate will step in again.

Most non-disabled people don’t really have to think about getting up: their morning routine is always the same. It’s not for me. The original assessor seemed to have no knowledge of spoon theory and little, if any, knowledge of invisible disabilities.

I had mental health treatment beginning in 2014. In January 2018, I was diagnosed with low mood and depression (problem severity: major). I certainly feel that in the initial decision in 2021, my mental health history was not correctly addressed.

That initial decision to reject my application for PIP left me feeling really upset and very low. I felt like giving up on the application. I began to doubt myself and think, “am I disabled enough? Do I deserve this?” Although I would come to my senses and realise that I definitely should receive PIP, I still struggled with energy and the motivation to continue applying. Without the support of my partner Olivia, who is a nurse, I couldn’t have appealed. Thanks to her, we kept going.

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Finally being listened to

We asked for a mandatory reconsideration (MR): this is where your case is looked at again. I was again denied the benefit. I felt shattered.

Eventually, we reached a tribunal stage in January 2022. Here, there was a panel including a judge, doctors and a disability coordinator who seemed to understand my condition. I went with Olivia. As soon as I started to explain spoon theory, the disability coordinator nodded – she got it – and everyone seemed more understanding.

I think there should be disability coordinators who can look at all PIP assessments. If you don’t have an immediately obvious mobility, sensory or learning impairment, in my experience, the current PIP assessors don’t seem to get it. The questions on the form do not make it easy to assess fluctuating conditions: these are standard, general questions that would apply every day. So the advice for anyone in my situation is to make sure you give examples of bad days.

Looking to the future

We won the appeal. Also, from my first incorrect assessment, the judge ruled that I was owed money in backdated payments. It was such a relief to have the money, and I finally felt I was being listened to and understood.

I am now a freelance TV production assistant, and I have recently worked on a show with the BBC. I did six-hour shifts for this project; I then took a short break before the next phase, which starts soon. I cannot work full-time, but I can approach part-time work with confidence, knowing that my battle for PIP is over.

I’m looking forward to seeing what the future holds.