'When a patient gets a first acute UTI, the treatment is failing people - they are giving three days antibiotics', Joanne McKinley tells ITV News Reporter Amrit Birdi
A chronic UTI (urinary tract infection) sufferer has lived with near-constant pain for 20 years of her life, after her condition was misdiagnosed.
Joanne McKinlay was rushed to hospital with urosepsis after the infection in her bladder spread to her bloodstream. Urosepsis is sepsis caused by infections of the urinary tract, including cystitis.
UTIs are usually caused by bacteria entering the urinary tract through the tube that carries urine out of the body - the urethra.
Women have a shorter urethra than men, which means bacteria are more likely to reach the bladder or kidneys and cause an infection.
Ms McKinlay is now determined to help others with the condition.
A Facebook group she created called 'Embedded/Chronic UTI Support Group' has more than 11,000 members, and she has set up a charity: Chronic UTI Global Support Ltd.
Ms McKinlay said: "We are an organisation of patients that seem better informed than the doctors that are treating us who are using outdated tests and treatment methods that have been discredited in randomised control trials."
"When a patient gets a first acute UTI, the treatment is failing people - they are giving three days antibiotics.
"That is not enough to kill the bacteria and it is missing 25 to 35% of patients. What are they going to do about that?"
Campaigners are calling for better treatment and diagnosis of chronic urinary tract infections (UTIs) that they say are affecting thousands of people, particularly women.
GPs and urologists rely on dipstick tests and urine cultures to diagnose bacterial infections, which campaigners say don't work for most cases of chronic UTIs.
This message has been echoed by many others, including Consultant Urogynaecologist Dr Rajvinder Khasriya.
She says at her specialist clinic she often sees patients who are unable to sit down for their consultation with her, due to the agonising pain they're in.
Dr Khasriya said the solution for this issue may be to go back to basics when it comes to treating chronic UTI patients.
She said: "We have to really understand or accept that the tests that we've been using for 70 years they're failing."
An NHS spokesperson said: "The NHS follows clear guidance from NICE on the treatment of UTIs and NHS organisations offer expert-led follow-up clinics to both men and women who need them."
"NHS staff are also provided with detailed information and training to ensure that they can provide the best possible treatment to patients."