Mum left paralysed after misdiagnosis raises awareness of Cauda Equina Syndrome

A mother who lives with constant pain after medical errors left her with a spinal injury and bowel paralysis is campaigning to raise awareness of its warning signs.

Toni-Claire Miller, a single mother of two from Kent, was 32 when she was repeatedly “fobbed off” by GPs after reporting numbness in her legs, excruciating back pain and bladder problems in 2018.

The condition — cauda equina syndrome (CES) — occurs when nerve roots at the base of the spinal cord become compressed, requiring urgent surgery to prevent lasting damage.

When Ms Miller’s CES was finally identified in hospital, a surgeon initially decided she did not need immediate surgery.

Multiple medical errors, evidenced in a High Court case in which she received a substantial payout from the NHS in 2024, have left her living in constant pain.

“I’m in pain all the time. There’s no let up, and along with the spinal cord injury, there’s severe nerve damage,” Miller told the PA news agency.

“So you have electric shocks, you get cramps, you get spasms. My bowel and bladder are permanently paralysed, so I have to use medical equipment just to be able to live, to stay alive.”

Three GPs at a Kent practice failed to identify the red flags for CES, instead offering her painkillers and referring her for an MRI scan with little urgency.

Recalling one appointment, she said: “I explained to him that when I go to the bathroom, it feels like I’m in labour, and he literally just fobbed me off and was like: ‘Well, I don’t know, what do you want me to do?

“We sent you. I can send you back to physio, that’s it because you’ve been sent for an MRI, you’ve been given extra painkillers’.”

Days later, her seven-year-old son found her in “horrendous” pain and called her parents, who took her to A&E.

Hospital staff correctly diagnosed CES, but a surgeon decided to try a spinal block before carrying out surgery.

“They did the spinal block, and unfortunately, the inevitable happened. They had to go in and perform the operation where they cut you open to remove the disc and relieve the spinal pressure,” she said.

It was too late. The delay caused permanent injury, and Ms Miller spent seven months in hospital following the surgery.

She said she feared that being in hospital for so long might affect her relationship with her then two-year-old daughter.

Speaking on Cauda Equina Syndrome Awareness Day, Ms Miller said she wants to raise awareness of the red flag symptoms, which include numbness in the legs and saddle area and a loss of bowel or bladder control.

“The public has a responsibility as well to know the red flags and to have confidence in themselves, to say, ‘something’s not right here, I’m going to the hospital’,” she said.

Her solicitor, Nadia Krueger-Young, said Ms Miller received “one of the largest” recorded settlements for CES because she was young and her case was so clear-cut.

The compensation has allowed the family to move into a suitably adapted home and afford the care they need, although Ms Miller acknowledged that not everyone with CES has that support.

“We were fortunate enough to win our medical case. So in turn, I can have carers and a nanny and people to help. And it’s still so difficult, even with that help,” she said.

Despite her challenges, Ms Miller praised her children – her son as her “hero” for helping care for her, and her daughter, now her “mini-best friend”.

“My path is set. There’s nothing I can do about that. All I can do is try to embrace each day as it comes and make as many memories as possible with my children.

“What I can do, though, is hopefully make a difference for another person and prevent it happening to anybody else.”