“Sick note culture” doesn’t exist, it’s toxic politics and our NHS that are failing us

In April 2024, current UK prime minister Rishi Sunak announced a clampdown on “sick note culture.”1 Former Conservative MP Matthew Parris claimed people were “abusing” the disability benefits system.2 But with 2024 figures from the Department for Work and Pensions (DWP) showing that fraud for personal independence payments (PIP) and disability living allowance are 0.0% and 0.1%, respectively3—something isn’t adding up. The current Conservative government has cast blame on sick and disabled people for systemic failings. Will our next government reject this damaging rhetoric and instead focus on improving healthcare?

This government has been quick to characterise disabled people and those experiencing ill health as scroungers.4 Those of us who are “economically inactive” because of ill health are an easy target. It’s probably easier to vilify us than tackle the core reason why 2.8 million people in the UK are too ill to work.1 In March 2023, public satisfaction with the NHS plummeted to 24%.5 The NHS waiting list stands at 7.5 million treatments.6 This goes some way to explaining those 2.8 million “economically inactive” UK citizens. Rather than blaming a group for whom life is already difficult, the incoming government could tackle an NHS which is failing to get those people well enough for employment.

But the NHS has issues deeper than just waiting lists. Overconfidence in unreliable tests is seemingly robbing some doctors of the ability to examine the patient in front of them, often treating a laboratory result rather than a person. I became ill in 2019 with a urinary tract infection that went undetected for nine months because of inaccuracies in urine cultures and dipstick analysis.7 I had constant fevers, excruciating pain, and such frequent vomiting that I lost almost a stone in weight and began losing hair. As a result of prolonged infection, I developed secondary adrenal insufficiency, postural tachycardia syndrome, and chronic exhaustion. I lost my job in engineering because the NHS let me get so ill that I became bedbound, losing my independence and any semblance of normal life.

I’m currently receiving long term antibiotic treatment from NHS Urology, after much fighting, while my health board decides whether it will fund treatment at the lower urinary tract symptoms (LUTS) clinic at the Whittington hospital—the only clinic for chronic UTIs in the country. After multiple rejected NHS referrals, I’ve been forced to self-fund five private consultations. I will also have to fund travel expenses to the LUTS clinic, if I am offered treatment there. I am one of an estimated 1.7 million women across the UK suffering with chronic UTI symptoms,8 struggling to get treatment because of poor knowledge and a lack of awareness of the condition within the NHS.

For two and a half years I’ve lived off my savings and the standard daily living component of PIP (now adult disability payment in Scotland) which is £290.60 a month. I endured an assessment, mandatory reconsideration, and an appeals tribunal to get it. The gruelling process worsened my physical and mental health. Had I not required funding to access private pelvic physiotherapy and autism-appropriate psychotherapy (which are both inaccessible on the NHS locally), I wouldn’t have applied.

The idea that disability benefits are being handed out to everyone is woefully misguided. The hoops people must jump through to obtain them deter many eligible people, let alone potential “fraudsters.” The current government has proposed an increase in the medical evidence required for a PIP award.9 I had a surplus of such evidence and was still denied an award twice, so what more is the government looking for?

This disdain for sick and disabled people that politicians are successfully fostering in the general public also seems to permeate our NHS. In 2023, a report by the Parliamentary and Health Service Ombudsman found that often NHS patients didn’t feel listened to and found the service lacking in compassion. The report also highlighted a “culture of defensiveness” within the service when things go wrong.10 And the deadly effects of gaslighting, dismissiveness, and outdated knowledge within NHS care are well documented.11121314 My father died in 2016 of non-Hodgkin T-cell lymphoma after cancer concerns were dismissed for two years because “if it was cancer, it would show up in blood tests.”

The 2.8 million people too sick to work is a symptom of a broken healthcare system, not the fault of people experiencing ill health. If the incoming government puts as much effort into facilitating positive change within our mismanaged NHS as the current one has in demonising the most vulnerable people in society, that figure could drop. NHS investment alone isn’t enough to improve the health of the UK. The NHS requires drastic reform: re-education, research, patient focus, and complete overhaul of a system that has operated with little scrutiny for too long.

Like most people with long term health issues, I’m desperate to work. But I need to get well enough to do so.