Sophia shares her journey applying and being reassessed for disability benefits and how she thinks it might have been different with more support.
To explain my experience of Personal Independence Payment (PIP) I’d need to tell you a little about myself. Although I have some other invisible impairments, my claim for PIP was on the grounds of mental health. Bad mental health has been part of my life for as long as I can remember, from CPTSD, to depression and social anxiety, with self-harming and suicidal tendencies thrown into the mix. I’d struggled through most of my childhood and at just 19 I had what I’m now told was a breakdown.
Returning from work one evening, I was only a road away from home when I just stopped, sat down on the pavement and cried. I often think back to that time and try and remember what triggered it, but I really can’t think of anything. I just sat crying. For hours. I just couldn’t bring myself to cross the road and it took a group of drunk students walking past in the wee hours for me to snap out of it long enough to sprint home and lock myself safely in my bedroom. From that day, leaving the house got harder and harder until just a few weeks later, I stopped going out at all.
More than a year on, with the help of a support worker, I applied for and was awarded DLA. My initial transition to PIP was uneventful and paper based too.
It was only when I had to renew a few years down the line that the trouble started. By then it had been years since I’d left the house at all. I even gave birth to my daughter at home on the floor. With post-natal depression now part of my mental health cocktail, by the time my assessment came around I was in a pretty bad way.
It’s difficult to explain how hard it is for me to have people inside my home. It’s the only place I feel safe and after years of never leaving it, the idea of opening the door to anyone fills me with a dread I can’t put into words. At that point, I was in such a bad place I needed prompting to do even basic things. It hurts to admit it, but weeks would go by without me even thinking to change my clothes, let alone wash my hair. I’d had a re-assessment for ESA a while before and although the process was triggering and horrendous, the lady who came was patient and lovely and I just about got through it. That knowledge didn’t make me dread the upcoming PIP assessment any less.
I won’t go into detail, but as someone with social anxiety and a fear of letting people into my home, the weeks leading up to my assessment were extremely difficult. Sitting with a complete stranger at my table, as they nonchalantly asked things like, ‘how often do you think about killing yourself?’ and throwing in random questions like ‘can you spell WORLD backwards?’ was confusing and nearly broke me. I tried to explain what life was like for me, how just a few weeks previous when the smoke alarm was going off in the downstairs flat and smoke billowed up the stairs I’d just sat in my bedroom and cried and that even the siren of a fire engine and banging on my front door hadn’t convinced me to go outside. How if it wasn’t for my long-suffering partner’s prompting, I wouldn’t even bathe or eat. That on a bad day, I couldn’t even have the curtains open, let alone a window. None of it seemed to register, the gentleman kept on asking things like:
How often do you take your child to the park?
Where do you go shopping?
When did you last meet up with friends?
Even my usually placid partner started to get irritated as it was clear the assessor wasn’t listening. I didn’t shop. The rare occasion I dressed, I did so in the clothes I’d had since I was a teenager. My partner bought the food shopping and did park trips and I’d lost all contact with friends as even the phone ringing sent me into a panic attack.
A couple of weeks later I found out I’d been awarded zero points. Nothing. It was as if my struggles weren’t relevant. I felt worthless. I briefly looked into appealing the decision, but the stress was just too much. I wouldn’t have made it to a tribunal and wasn’t aware that I had other options, so I just gave up. A few months later I received my ESA renewal and the thought of going through another assessment had me binning the forms, so that stopped too.
While my overall mental health has started to improve, the loss of PIP kept me trapped inside for longer. I could no longer afford to pay for the private therapist (the only way I could get one to come to the house) and the aids that had started to help were gone quickly too.
I’m not sharing my story to scare anyone. Statistically most people are awarded without problem, but back then I was too scared and too ill-informed to fight for what I was entitled to. I strongly believe if I’d been more clued in and had any advice, I might be in a better situation now.
What advice would you give someone facing a PIP assessment? Have you had to fight for what you thought you deserved?
If you're in process of moving from DLA to PIP, applying for PIP, being reassessed or going through an appeal, we have plenty of information and advice to support you on our website, as well as dedicated sections of our community which can be found here.