Content warning: This blog will mention suicide throughout.
Many years ago, I became too unwell to work and my life unraveled in a matter of months. I applied for Universal Credit and PIP, hoping to receive the support I felt I so desperately needed. The nurse who assessed me for PIP came out to my temporary accommodation because I was immobile. My temporary accommodation was not wheelchair accessible; I was effectively stuck in my room once I had crawled up the three stairs into it. So, I was using a bucket to go to the toilet, which felt humiliating.
I only had one medical report to submit as my medical evidence because I had only been diagnosed a connective tissue disorder three months before the assessment. I naively thought the nurse would see my desperate situation and that I would receive the benefits I was entitled to. But she lied. She wrote on the form that I could do more than I was able to, and she dramatically downplayed the reality of what I was telling her. This meant I had to ask for a mandatory reconsideration notice, which was also denied on the basis of the things the nurse had written.
Exhausted, immobile, in constant pain and marooned in my freezing room, I felt suicidal. I was losing everything - my sense of identity, my financial security and my faith in the system that was supposed to support me. Too unwell and immobile to carry on with life as it had previously been, yet turned away and made to feel like a fraud and a liar by the DWP, I didn't know where to turn. I felt like an alien with no place I belonged. I isolated myself from friends due to my depression. I felt like I didn’t deserve friends and would never be able to go back to having normal conversations with them after experiencing such darkness.
Months later, after nearly maxing out my credit cards in order to live, while receiving no income, I finally reached the end of the line: the tribunal stage of my appeal. Two doctors and a lawyer, interviewed me in person; they read my medical notes and ruled that I was entitled to the maximum amount for both the mobility and daily living components of PIP. From what I've read, stats show this is how tribunals go in most cases; common sense prevailing and claimants receiving the support they should have been given at the start. I feel like the job of assessors is to stall on people getting what they are legally entitled to.
The wild thing is, if the DWP hadn’t gone out of their way to make my life so hard in the early stages of becoming disabled, I would probably have been able to work again within a couple of years. But due to the impact of stress on my already unwell body, I ended up having a flare-up that saw me stuck in bed for the best part of 18 months. I lost all my strength and muscle mass in that time, which I’m still working to regain. It took 6 years before I was able to work again, but I would have loved to have been able to work again sooner.
I reported the nurse to the Nursing and Midwifery Council (NMC) because it terrified me that this nurse was being entrusted with vulnerable people’s lives. They fobbed me off and said she had had no other complaints, so they were closing the case. I later saw statistics that revealed lots of other nurses had received similar complaints for their conduct as benefit assessors, and that they were all shut down in a similar way by the NMC. It’s hard to trust people and systems of power when you have been on the receiving end of such treachery.
I have started working again now (part-time, remotely, often from my bed). My experiences of the benefit system have left me with trauma and every time I am forced to interact with the DWP or am expected to fill out their ridiculously long forms, I relive it and feel completely overwhelmed. I always have this sinking feeling in my stomach that they will pull the rug from under me again. I remain acutely aware that I am only ever one cruel assessor away from eviction from my wheelchair-accessible flat. It's upsetting to think that every bit of hard-won strength and mobility I regain, every good day or moment of joy where I’m not grimacing, or limping, could be used against me.
The DWP kicked me when I was down and I could've easily chosen to end my life at that point, but I'm so glad I didn’t! I am an atheist and believe I only get this one tiny snippet of existence. What a precious thing to be given! There were so many joyful moments ahead of me that I would have missed if life had ended then. I love my life, especially the simple things like nature, laughter and snuggling up with my dog and partner every evening.
If you’re a disabled person who has been beaten down by the benefits system and made to feel like suicide is the only option, please keep living. I know you’re exhausted; I know they’ve made you feel unworthy of life, but please don’t let them win. They only deplete the world of value - you add value. You are infinitely valuable. Capacity to work does NOT determine your value to the world. Know that you matter, and that we need you here. Keep going. It might feel bleak now, but it won’t be this way forever.
- Written by a member of Equal Lives
Suicide helplines and listening services:
Samaritans - If you need to talk to someone, they're open 24 hours a day, 365 days a year. You can call 116 123 (free from any phone).
Shout - If you would rather not talk on the phone, but are in crisis and need immediate help, Shout offers a 24/7 text service. Text SHOUT to 85258.
Switchboard. For gay, lesbian, bisexual or transgender folks, you can call them on 0300 330 0630 (10am–10pm every day).
Or to find a local NHS urgent mental health helpline in England, https://www.nhs.uk/service-search/mental-health/find-an-urgent-mental-health-helpline