Scotland's social security system treated me better as a disabled person. DWP must take notes

In one week, I lost my home, my job and my health. Then I met the benefits system. The help that was meant to lift me up nearly broke me.

Being disabled comes with costs people don’t see – accessible products, helping with cooking, cleaning and getting around. So, when someone mentioned personal independence payment (PIP), I thought it might help me get back on my feet.

I went through a gruelling 12-month process of applying for PIP, which had a huge knock-on effect on the rest of my life. I sat there explaining symptoms to the top of someone’s head. At my PIP assessment, the assessor didn’t even look at me. I have invisible conditions and hidden disabilities, which are less obvious to assessors. You learn quickly that being ill isn’t enough. You have to prove it over and over.

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At first, I didn’t receive what I was entitled to. During my first application for employment and support allowance (ESA), the judge at my tribunal decided that I was ‘too intelligent to not be in work’, despite my advocate clearly stating I was too unwell to be working. If only it worked like that. Later, when I applied for PIP, I faced a different set of challenges.

During my PIP mandatory reconsideration, my paperwork was lost for eight weeks, and my points were miscalculated. That caused a year-long delay in receiving the benefits I needed. Every phone call felt like a battle to be believed. Once, a member of staff told me I was asking for preferential treatment. After all this, I was informed that my award only ran for another three weeks and, at that point, I would need to reapply.

The delay had a massive impact on my finances. I was behind on my rent and ended up in debt that took years to clear. I borrowed money from friends, which had damaged those relationships. I struggled to feed myself and do basic tasks. So, it affected my life, and it took six years to properly recover from it.

Eventually, I was relieved to learn I’d finally been awarded the benefits I was entitled to. But after everything I’d been through, from all the negative treatment, the relief lasted less than a day. I felt anxious and weary. I didn’t trust the system.

Stigma is everywhere in the system, in the sigh on the phone, the raised eyebrow, the missing “please”. You start to shrink before you’ve even filled in the form. You tell yourself not to make a fuss. You tell yourself others need it more. That’s what stigma does: it teaches you to disappear. Without support, people often hit crisis before they ask for help.

If you’ve had negative experiences, it makes it harder to deal with in the future. Most of us will need the benefits system at some point, so it should treat us all with dignity and respect. As a co-production partner at Turn2us, I am campaigning to make sure our social security system is there for all of us when we need it.

We need the government to transform access to disability benefits by simplifying the PIP application process and training assessors to understand the realities of disability and illness.

We need supportive conversations, not interrogations.  Frontline staff should have the time and tools to build trust with the people they support. And Jobcentres should lead with trust, not suspicion – giving people time and support to prepare for the next step in their career, instead of threatening sanctions that don’t work.

I shared my experiences at Turn2us’s parliamentary event launching the Stop The Stigma campaign because I don’t want others to have the experiences that I had. I feel that kind of responsibility to make it easier for people coming after me. I want to hold people in power to account. Without people with lived experience getting involved in campaigns like this, we’re left with statistics instead of stories – data points, instead of people.

Hearing real people’s stories makes it a lot easier to understand how people get trapped in the system and why people need support in the first place. Our valuable knowledge from our lived experiences helps shape solutions that actually work for those navigating barriers in the system.

Now I live in Scotland, and I’ve noticed that the Scottish adult disability payment (ADP) process was a lot better. They filled out the form with me during the session. It was much more like a conversation than a test. Instead of asking specific closed questions like ‘Can you hoover’, they asked ‘How do you manage to keep your flat clean?’ It was open-ended, natural, friendly and not interrogative. The Department for Work and Pensions (DWP) could learn a lot from this system.

No one person is an island. You break your leg: you go to the hospital; you get a chest infection: you go to the doctor; your washing machine blows up: you call a plumber. Your lights go: you call an electrician; you lose your job when you get sick: you go to the social security system. It should be as easy and automatic as that. You shouldn’t have to justify how and why you need help. It should just be there – without stigma. We all pay into the system. We’re all entitled to get support from the system, and that needs to be remembered.

Caroline Cawley is a co-production partner on Turn2Us’ Stop the Stigma campaign.

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