Sarah reflects on the Disability and Social Security Amplify theme group’s early work and its response to the Pathways to Work consultation in 2025 (Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper – GOV.UK), not long after the group was formed. She describes why the current PIP system needs to change and shares the experiences and concerns that the group brought into its submission.
Being a part of this group only since last year (2025), I never expected to be working on such a massive piece of work so soon. Navigating the benefits system, especially Personal Independence Payment, has been one of the most stressful situations I’ve experienced in my entire life, so being able to be a part of the Pathways to Work Consultation, I was ready to share my own lived experience to be able to hope that this will make a difference.
Through deep discussions with the rest of the Amplify group and then sharing my own experience of navigating the system with one of the fellow members being a massive part of my journey, one thing was really clear: the current PIP system isn’t working. It needs to be shaped in partnership with different disabled people, so that a more holistic understanding of disability can be gained by those that are assessing and making decisions about a person’s eligibility for this benefit.
Alarming things were being suggested when it came to the Universal Credit (UC) element and PIP; starting off with the UC element, the fact that people, at a certain age, were being proposed to be on a lower amount of money than others made no sense. Disability doesn’t discriminate and it doesn’t matter where you live, how old you are; just because you are younger than other people with the same diagnosis or day-to-day activity struggles doesn’t lessen the impact a disability can have on a person. Getting rid of the PIP benefit would drive disabled people and their families into potential further poverty and take away their ability to have their own transport, meaning those working with PIP may lose their job from this…there’s a plethora of problems that would emerge if something as drastic as scrapping PIP were to happen without having the proper consultations with those that understand disabilities and those that live with disabilities.
After taking three years to get my PIP sorted out so that I was on the correct amount for my own needs, I know more than most how degrading and traumatic going through disability assessments are for so many. The amount of stigma against this benefit that has been fuelled by misinformation, shared through social media and the media, has meant that only a small minority of disabled people even apply for PIP. Stories within the disability community about others experiences of trying to claim what they are entitled to are littered with despair, belittlement of their circumstances, and very little compassion or thought about the effects of this application process on disabled people or those that are applying on their behalf.
The biggest thing for me is the lack of dignity that is involved in the process. Going through this process is sharing the most intimate and vulnerable aspects about someone’s day-to-day life, that often-disabled people feel they have to hide from other people. The smiles people put on to hide the pain they are in because they want to be out in the community, the cries that people don’t hear when they are dismissed by health professionals and the mental anguish of reading the harmful rhetoric that the media regurgitates, further fuelling ableism in their wider community. Making those that are dealing with disability feel more isolated and like they are an outcast in their own neighbourhood.
Here is the theme group’s 2025 Pathways to Work Consultation Response in full: Poverty Truth Network response to Pathways to Work Consultation.pdf