Helen Edwards has been left with life-changing brain damage after medics repeatedly mistook a serious illness for a urinary tract infection (UTI).
At first, the 74-year-old from Aberystwyth had flu-like symptoms and nausea, which a GP brushed off as a suspected urine infection. But days later, it was obvious the antibiotics had not worked when her whole body started shaking.
After visiting the GP for the second time in September 2025, who again said she had a UTI, her symptoms only got worse as she became confused and disoriented.
The “fit and healthy” grandmother-of-10 went from dancing at a festival, sea swimming and walking everywhere just a week before, to not being able to navigate her own home.
“She had gone into the toilet thinking it was her office, and then was using a notepad and pressing it as if it was a phone,” her daughter Jane Richards told The Independent.
Immediately noticing something was wrong, Ms Richards took her mother to A&E at Ysbyty Bronglais in Aberystwyth, Wales. But after a 10-hour wait, she was sent home again and was told her behaviour could be delirium from a UTI.
Ms Richards took her straight back to A&E when her mother was found in her bed, shaking and confused again, a day later. This time she was given an IV antibiotic, as medics still thought she had a UTI, and she was kept in hospital to recover.
It was only when a consultant happened to be doing his rounds and noticed her shaking and strange behaviour that he ordered a CT scan – a week after Ms Edwards first went to see her GP.
Ms Edwards was diagnosed with viral encephalitis, which is an uncommon but serious inflammation of the brain, with one in five cases proving fatal.
In her case it was caused by the herpes simplex virus type 1 (HSV-1), also known as the cold sore virus, despite her never recalling having a cold sore. The virus can stay dormant for years and it is estimated to affect more than half of people under the age of 50 worldwide.
Confusion or disorientation, seizures, changes in personality and behaviour, difficulty speaking, weakness in the body and loss of consciousness are all symptoms of the condition, according to the NHS.
Despite it affecting approximately 6,000 people each year in the UK, awareness remains dangerously low. Almost 77 per cent of people globally do not know what encephalitis is, contributing to delays in diagnosis and treatment that can lead to irreversible brain injury or death, according to Encephalitis International, which is supporting the family.
Now Ms Richards wants to make sure everyone, especially medical staff, knows the symptoms and stressed “time is of the essence", as antiviral treatment for encephalitis within 48 hours can reduce the risk of severe symptoms.
“If someone is behaving strangely, if they’ve got flu-like symptoms, medics just assume a lot of the time, with older people particularly, that it is a UTI,” Ms Richards said.
Ms Edwards spent 12 weeks in hospital before she was discharged at the end of November, but the brain damage meant she has had a slow recovery.
She had intensive physiotherapy and occupational therapy sessions, but when she got home, Ms Edwards couldn’t even recognise some of the rooms.
“She didn't know what anything was or how to do anything,” Ms Richards explained. “She has no recollection and she can't navigate places.”
After realising her mother needed more assistance than carers could offer, along with her siblings, she now takes it in turns to care for her by cooking and shopping.
Ms Edwards further developed autoimmune encephalitis in February this year and is now being treated for the complication at Swansea's Morriston Hospital.
Dr Ava Easton, chief executive of Encephalitis International, told The Independent that a “delay in an accurate diagnosis can be devastating”.
“Encephalitis is a medical emergency, and recognising it early — regardless of age — can be the difference between recovery or severe disability and death,” she added.
“Too often, HSV‑1 encephalitis in older people may result in the early symptoms (confusion, personality change, or altered behaviour) being mistakenly attributed to something less serious such as a UTI.”
Hywel Dda health board said staff are trained to the highest standards to “respond quickly to symptoms for a wide range of conditions”.
Medical direction Mark Henwood said: “Encephalitis is a rare and serious condition that is difficult to diagnose because the symptoms are similar to several other conditions.
“As a health board, we are committed to sharing information about as many illnesses and conditions as possible – especially most common conditions that affect a large number of people.”
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