Who We Are
BladderAction is a UK-based patient advocate group, established to raise awareness of cUTI and to challenge existing testing and treatment for all known forms of UTI.
Urinary tract infections (UTI) are extremely common. Many people who experience a bout of cystitis/UTI will swiftly get over it. Unfortunately, for around 30 percent of us it’s a very different story. And in spite of new discoveries, sophisticated diagnostics and inventive treatments elsewhere in medicine, nothing has been found to cure the persistent form of this disease.
It has always been clear to us that something had to be wrong with the urine testing. It just didn’t make sense that so many should have negative test results, yet clearly display all the symptoms of a bladder infection.
It didn’t take long to discover through the scientific literature that the standard urine test, used since the 1950s, was seriously flawed. It didn’t take long to discover that, since the 1980s, researchers had been questioning the validity of these tests when their study results were showing that an alarming 50% of genuine infections were being missed.
And it didn’t take long to discover that the medical authorities didn’t want to know.
Members of our group have been lucky in finding a specialist who, over the past 20 years, has developed a successful treatment protocol for those suffering these complex infections. This specialist clinic is unique in the UK. It is at present under serious threat, and part of our campaign for the moment has to be its protection, as well as to demand similar facilities around the country.
It is estimated that around 500,000 people in the UK are sufferers. In our opinion this is likely the very tip of the iceberg.
So far we’ve managed to bring the issue as far as parliament. In October 2016 Catherine West MP (Hornsey & Wood Green) sponsored an adjournment debate on the failures in testing and the lack of NICE guidelines. In response, a Minister for Public Health felt the issue serious enough to want to meet MPs and the patients they represent. The Minister recommended that NICE develop appropriate guidelines for this ’orphan’ condition. At present there are none. We are lobbying government hard to see that these meetings take place as promised and that NICE does its job.
- Adopt better testing and treatment throughout the UK for chronic urinary tract infection (cUTI).
- Ensure all people in the UK can access appropriate treatment centres for chronic urinary tract infection (cUTI).
- Support and promote scientific research into chronic urinary tract infection (cUTI) worldwide, with the ultimate goal of finding and introducing a fast and effective treatment.
“Our mission is to lobby on behalf of sufferers for widespread awareness and acknowledgement of all forms of urinary tract infections (UTI). We aim to challenge the current, inadequate testing regimes for UTI and expose the ongoing harm and morbidity that these out-dated tests may cause. We aim to bring about change in the current treatment guidelines for UTI, and give hope to hundreds of thousands of sufferers, currently abandoned by a healthcare system that adheres to guidelines that are admitted to be inadequate or, in the case of chronic UTI, simply do not exist.’ BladderAction UK, 2017