The clamour for person-centred disability reform rightly echoes across our society at the moment with the UK Labour Government proposing yet more harsh changes to the welfare system. We see campaigns highlighting the potential additional struggles for those at risk of losing PIP benefits due to changes in eligibility criteria, the need for the continuation of the health element of Universal Credit, and for recognition of the diverse range of challenges and needs within the disability community. Yet, there exists a silent segment, a group often unseen, unheard, and forgotten in these crucial conversations: those eligible for support, repeatedly failed by the very system designed to help them, and now too ill to even fight.
Imagine the crushing weight of being unwell, needing support to navigate daily life, and then being told, time and time again, that your struggles aren’t ‘enough’. This isn’t a hypothetical scenario; it’s the lived reality for countless individuals who have faced repeated denials from Department for Work and Pensions (DWP) assessors. These aren’t people trying to game the system; they are individuals with physical health conditions, often exacerbated by the stress and anxiety of the assessment process itself. We have been contacted in recent weeks by 5 such individuals all keen to share their story with us in the hope it could help the push for change.
*Julie* (name changed) is one of these individuals. We are grateful to Julie for sending us her personal story and thoughts on the issue of disability reform. We are sharing extracts of her contribution here with permission.
Here is Julie’s story, in her own words (bold lettering and brackets added by us for emphasis and clarity).
“Even though I am sick enough, I got refused PIP due to the Tories DWP being utter bastards. I did not fight it as I was too sick and too traumatised just having to go through ESA applications. So I only get ESA. The PIP assessors lied. Like they did on my ESA. I had to go to tribunal for my ESA which I won and the judge actually had a big strop to the DWP about it. So even though I actually meet the requirements I was too sick and traumatised to reapply. I basically live in poverty. I get zero help for my condition on the NHS. There is no knowledgable M.E. support and I can’t even afford any private healthcare. I don’t get any help for my vitamin deficiencies as I react badly to the NHS tablets and have to keep trying different vitamins. I struggle to get basic bloods to monitor the situation. Partly due being too ill and uninformed Drs. Can’t get a referral for POTS even. I’ve basically given up. I’m stuck on benefits as I have zero healthcare.
Cutting benefits of any kind while refusing any actual care is fundamentally immoral and utterly cruel. The NHS doesn’t recognise the seriousness of my disability. I am so traumatised from the constant gaslighting that I have just given up seeking any care at all. I’m isolated and so sick that I am unable to fight for basic things that could help like basic healthcare and PIP. Things feel so depressing and desperate that I can’t really see a way out unless there is fundamental change in NHS care and support. I have been utterly abandoned and am terrified for the future and talk of cuts. If it were not for the support of my parents I would be dead. I would have starved to death after GET (Graded Exercise Therapy) & CBT (Cognitive Behavioiral Therapy) pushed me from mild to very severe M.E. The NHS dropped me completely after they destroyed what was left of my health.
I’m too terrified to apply for any more financial help like PIP in case they look at my ESA and cut that off. I have no real words to fully explain how desperate things feel right now. It’s part of the reason I am not on social media anymore. I can’t literally cope with hearing friends with M.E. die or the injustice of how we are treated. I feel like a leper. All I want is to be well enough to work and support myself but with zero medical help my situation is bleak.
Many of us are under-claiming not over-claiming. I went for years in a lower rate ESA group due to this. Even though I struggle with basic self care. Many of us are utterly traumatised by the abandonment of healthcare while many of our friends die from lack of care. Either through starvation in hospital or friends taking their own lives through desperation. There is not a month that goes by that I don’t hear of deaths in the community. I literally have DWP & NHS PTSD. I have as little to do with the DWP as I can as I find it so traumatising. I’m only answering your call for help in the hope it changes things. The DWP report at Christmas shows that they have no clue and can’t even differentiate between PENE and idiopathic fatigue. Until this measurable, testable fact is fully acknowledged they will have no real understanding of the physical disability we actually live with. If we don’t acknowledge, research and treat PENE, one of the most disabling aspects alongside POTS. Then it is fundamentally immoral to remove financial support from patients who don’t even have access to vital healthcare.
Julie’s situation is not an isolated incident. The stories of individuals repeatedly denied benefits, despite clear health needs, are a stark indictment of a system that often prioritises rigid criteria over individual complicated realities. The assessment process, frequently criticised for its lack of understanding of complex and fluctuating conditions, can leave individuals feeling dehumanised and disbelieved. The mental health consequences are devastating, creating a vicious cycle where the very act of trying to access support further diminishes their ability to do so.
What happens to these forgotten voices? They become trapped in a limbo of ill health and fear. Too sick to navigate the complex application processes, haunted by past rejections, they often rely on the kindness of family or struggle in isolation. Their experiences are rarely reflected in mainstream disability campaigns, perhaps because they lack the energy and resources to actively participate. Yet, their stories are crucial. They highlight a critical flaw in the system, one that punishes the sickest and most vulnerable.
Disability reform must encompass these individuals. It must address the systemic issues within the assessment process that lead to repeated unfair denials. It must acknowledge the profound impact these denials have on physical and mental health. Crucially, it must find ways to reach and support those who have been silenced by the very system that should have been their safety net.
Let us not forget the forgotten voices. Their struggle is a powerful reminder that proactive and constructive disability reform must be compassionate, person-centered, and ultimately, for everyone who needs it. Their silence should not equate to their invisibility. It’s time we amplified their stories and demanded a system that truly supports all those living with disability, regardless of their ability to navigate its often-cruel complexities.
Thank you Sally, for trying to bring awareness to our plight.