Grandmother left with life-changing brain damage after doctors mistook rare condition for a UTI

Helen Edwards faced life-changing brain damage after medics repeatedly confused a serious illness with a urinary tract infection (UTI).

The 74-year-old, from Aberystwyth, initially had flu-like symptoms and nausea, but the GP dismissed this as a suspected urine infection. However, days later, when his whole body started shaking, it became clear that the antibiotics were not working.

After a second visit to her GP in September 2025, who told her she had a urinary tract infection again, her symptoms worsened as she became confused and disoriented.

The “fit and healthy” grandmother of 10 went from dancing at a festival, swimming in the sea and walking everywhere just a week ago to not being able to go to her own house.

“He went to the bathroom, thinking it was his office, and then he used his notepad and pressed the buttons as if it were a phone,” said his daughter, Jane Richards. Independent.

Realizing immediately that something was wrong, Mrs Richards took her mother to A&E at Ysbyty Bronglais in Aberystwyth, Wales. However, after a 10-hour wait, he was sent home again and was told that his behavior could be delirium caused by a urinary tract infection.

When her mother was found in bed again a day later, shaking and confused, Mrs Richards rushed her back to A&E. This time he was given IV antibiotics and kept in the hospital to recover, as medics still thought he had a urinary tract infection.

It was only a week after Ms Edwards first visited her GP that a consultant ordered a CT scan when he noticed her shaking and strange behavior during the examination.

Ms Edwards was diagnosed with viral encephalitis, a rare but serious inflammation of the brain that turns out to be fatal in one in five cases.

In her case, it was caused by herpes simplex virus type 1 (HSV-1), also known as the herpes virus, although she never remembered having a cold sore. The virus can remain dormant for years and is estimated to affect more than half of people under the age of 50 worldwide.

Confusion or disorientation, seizures, personality and behavior changes, difficulty speaking, body weakness and loss of consciousness are symptoms of this condition, according to the NHS.

Despite affecting around 6,000 people in the UK each year, awareness remains dangerously low. Almost 77 percent of people worldwide don’t know what encephalitis is, contributing to delays in diagnosis and treatment that can lead to irreversible brain damage or death, according to Encephalitis International, which supports the family.

Ms Richards now wants to make sure everyone, especially medical staff, knows the symptoms and stressed that “time is of the essence” as antiviral treatment of encephalitis within 48 hours can reduce the risk of serious symptoms.

“If someone is acting strange, has flu-like symptoms, doctors often assume it’s a urinary tract infection, especially in older people,” Ms Richards said.

Miss Edwards spent 12 weeks in hospital before being discharged at the end of November, but the brain damage meant she made a slow recovery.

She underwent intensive physiotherapy and occupational therapy sessions, but when she came home Ms Edwards could not even recognize some of the rooms.

“He didn’t know what anything was or how to do anything,” Ms. Richards explained. “He has no memory and can’t go anywhere.”

After realizing that her mother, along with her siblings, needs more help than caregivers can offer, she now takes turns caring for her by cooking and shopping.

Ms Edwards developed further autoimmune encephalitis in February this year and is currently being treated at Swansea Morriston Hospital for complications.

CEO of Encephalitis International, Dr. Ava Easton said: Independent “Delay in correct diagnosis can be devastating.”

“Encephalitis is a medical emergency, and early recognition of it, regardless of age, can be the difference between recovery or severe disability and death,” he added.

“HSV-1 encephalitis in the elderly can often cause early symptoms (confusion, personality change, or behavior change) to be mistakenly attributed to a less serious condition, such as a urinary tract infection.”

The Hywel Dda health board said staff were trained to the highest standards to “respond quickly to symptoms for a wide range of conditions”.

Medical director Mark Henwood said: “Encephalitis is a rare and serious condition and is difficult to diagnose because its symptoms are similar to many other conditions.

“As a health board we are committed to sharing information about as many diseases and conditions as possible, especially the most common conditions that affect large numbers of people.”