I’ve been wanting to write about my experience with PIP (Personal Independence Payment) for a couple of years, however I’ve always felt hesitant as the benefit is seen very negatively online and in the media – where are all the positive stories? But sure enough, you’d find a library full of ‘horror stories’.
Another reason is that disabled people are more susceptible to judgemental opinions, such as “You’re lucky that you don’t have to work, yet you get money/a free car” and more. There is so much stigma around benefits and it shouldn’t be like this.
Before I share my experience with Personal Independence Payment, the assessments, and what the benefit enables me to do, I will explain what PIP is and what it entails.
What is Personal Independence Payment?
Personal Independence Payment (PIP) is a non-means tested benefit, this means that the amount you receive from PIP will not have any effect on other benefits that you are in receipt of. PIP provides an income for people with long-term health conditions and disabilities, that affect their ability to carry out daily activities, such as cooking, washing, communicating, etc and mobility, to help with the extra costs of living with a long-term health condition.
The benefit is split into two components: daily living and mobility/moving around. For either component, you can be awarded the standard rate or the enhanced rate. Below are a few examples of what claimants can be awarded:
- Standard Daily Living / No Rate for Mobility
- Standard Daily Living / Standard Mobility
- Standard Daily Living / Enhanced Mobility
- Enhanced Daily Living / Standard Mobility
- Enhanced Daily Living / Enhanced Mobility
Claimants can receive one or both components, and be awarded either rate – it depends on the amount of points they score for each component.
My Experience
Note: With my first claim (2017), even though I state my conditions below, at the time of completing the form and having the assessment, I had no diagnoses and all we knew was that I had hearing loss, central vision loss, balance issues and severe fatigue – I was undergoing tests still and we could only go by what symptoms I had.
When I was dismissed from my last job (June 2017), my mum took me to our local job centre to see if they could give me any advice on what to do next. At this point, I had hearing loss, central vision loss and balance issues, but I could still walk (just). Mum answered the majority of the questions as I was still emotional from losing my job. They gave mum leaflets explaining about PIP and another benefit.
I knew of PIP before this appointment, but I didn’t understand how it worked and what happens. Firstly, mum phoned PIP on my behalf to request a form. Secondly, once I received the form I then had to complete it – although mum had to complete it on my behalf as the form was quite small and I struggled to read it. I remember the form being 30 pages long (roughly).
For each activity, such as cleaning myself, cooking, toileting, dressing, etc I had to state how my disabilities affected my ability to carry out these activities and if I needed to use any aids. For example, communicating – due to my hearing loss, I am unable to understand what people are saying to me when out and about, even more so if they don’t speak clearly or directly to me. Therefore, I always need either Ewan or my mum with me to relay what the other person is saying.
Another example would be preparing food – due to my central vision loss, I am unable to cut food when preparing, as I have misjudged the knife and my finger. Thankfully, only minor but as it was happening more often, it was a danger.
The form itself is in-depth and draining, even though I didn’t fill out my first form myself, mum did ask me the questions and I felt very overwhelmed and exhausted by the end of it, as did mum. Next, we had to send copies of supporting evidence, this was any medical reports that I had, albeit not much evidence was provided at the time as I was still undergoing tests. After we sent the form and evidence off, we had to wait for an appointment for me to be assessed.
Assessment Day
Note: My assessment wasn’t until the end of August, by which point my health had declined and my balance issues were more noticeable. We sent the form off at the end of June/beginning of July; I waited 8 weeks for my assessment.
I remember the walk to the assessment, it was a hot day and despite my balance, I tried to walk as far as I could before asking mum to help – I was struggling to breathe, I was exhausted, and I was crying because I just wanted to rest. We arrived with about 10 minutes to spare, I think. Thankfully, the waiting room was completely empty and, while having some ice cold water, I could try and get my breath back and, admittedly, have a little cry.
A lady came to meet us and we then followed her to a room, similar to an office. She tried to talk to me, but I couldn’t hear her, and I was struggling to concentrate due to fatigue. I gave mum permission to speak on my behalf, and other than mum relaying a few questions to me, I was trying my hardest not to fall asleep. I remember having to stand and look at a board on the back of the door, it had letters on and unless I used my peripheral vision, I couldn’t see what they were.
Also, while standing, the lady asked me to read from a script which had the same sentence but in different font sizes. I was struggling to read the largest font unless it was right in front of me, plus while trying to read, my balance was off and I started swaying so mum had to support me. That made me even more tired.
What mum relayed to me next, was completely unexpected and it made me emotional. She told me that the lady had talked about her dad, who was in a similar position as me, so she knew how much I wanted answers, she could see the impact that all of this had on me. When mum helped me walk back out into the waiting room to leave, the woman shook our hands but she held my hand with empathy. She was close enough that I could see she was tearful. She wished me luck with finding the answers.
I know I was very fortunate to have an assessor like her, I just wish many other claimants would have assessors like her.
To my surprise, I got my decision back in under 2 weeks, I was awarded the enhanced rates for both components, and the award length was 1 year – which I felt was very fair as I was still undergoing tests and nobody knew if there would be treatment or anything. On top of that, the amount that I would be receiving was backdated to when my claim began, totalling around £1,700.
The money massively helped with the endless travelling to and from hospital appointments, the majority of them being for London around that time, so not cheap.I was able to buy my own food, pay off a couple of debts and still have some leftover for future appointments.
But then 2018 happened which put a huge spanner in the works… the next part of my experience will be published soon.
Have you claimed PIP or a disability benefit? How has your experience been?
