A former NHS worker who was diagnosed with a rare long-term health condition was downgraded on her benefits payments despite her chronic condition remaining the same.
Kitty King, 40, from Maidenhead, said she has had to “repeatedly” prove how debilitating her condition is to qualify for personal independence payment (PIP).
Ms King had been working in the NHS as a healthcare assistant when she developed Cauda Equina Syndrome.
The rare condition is caused by a large, prolapsed disc in the lower back and can bulge outwards between the vertebrae and press on the nerves within the spine.
Ms King required urgent surgery to save her mobility, but the condition left her with permanent nerve damage.
She told The i Paper: “The surgery saved my mobility, but it didn’t undo the nerve damage. I live with chronic nerve pain, bladder incontinence, and flare‑ups that can completely take over my day.
“Some days I can function well, and other days it feels like my spine is being snapped in half. I can’t predict it, and that unpredictability affects everything, walking, standing, leaving the house, even basic routines”.
Since being diagnosed with the condition in 2018, she said she felt like she had to “prove repeatedly” to the Department for Work and Pensions that her condition existed.
‘I had to prove that I needed support’
Kitty revealed: “Trying to prove this to personal independence payment was incredibly difficult. I was downgraded in 2025 and lost my mobility support, even though my condition had not improved, and I’ve had PIP since 2019.
“The whole process felt like I had to prove repeatedly that I was struggling enough to deserve help. Trying to explain how things affect me on bad days, especially when it’s not always visible was really difficult.”
Kitty required urgent surgery to save her mobility, but the condition left her with permanent nerve damageWhile coming to terms with her long-term health condition and looking after her young daughter, she was also going through the “emotional” stress of the application.
‘I rely on people more than many realise’
Ms King said: “As a parent, I didn’t have the option to step away from it. I was dealing with the stress of the application while still needing to show up every day for my child. It’s not just paperwork, it’s emotional, and it takes a toll.”
The former NHS worker admits that without the extra personal independence payment she would have to choose between taking transport or paying a bit more for things that save time.
“I rely on it more than people probably realise,” she said.
“There are days where I must make things easier just to function – like choosing transport instead of walking or paying a bit more for things that save time and energy. Without that support, I’d be constantly choosing between essentials.”
Kitty feared if the personal independence payment was taken off her it would leave her struggling “mentally and physically.” She admitted it is not about “comfort” but about being able to “cope”.
She said: “With help from the Spinal Injuries Association, I appealed and eventually got the correct award. That process really highlighted how misunderstood conditions like mine can be, and how important it is to speak up for people living with hidden disabilities.
“PIP is not extra; it is what allows people like me to function and care for our families. It allows me to keep a level of stability and independence that I wouldn’t otherwise have. More importantly, it helps me be present and consistent as a parent and wife.
“Something as simple as being able to take pressure off on a difficult day makes a huge difference. It means I can still look after my child properly, taking the pressure off my husband who works and keep things running, instead of completely burning out. It’s not about comfort; it’s about being able to cope.”
A DWP spokesperson said: “We are unable to comment on the individual case as The i Paper did not share the relevant details.
“Supporting disabled people will always be our top priority, which is why we launched the Timms Review, working with disabled people and their organisations to ensure PIP is fair and fit for the future. We also opened a Call for Evidence so people can share their views on how the benefit should be reformed.”
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