I’ve been asked by CUTIC UK to share this petition to help UK NHS patients gain access to treatment for lower urinary tract symptoms including interstitial cystitis and chronic UTIs.
CUTIC are campaining for better testing and care for patients with chronic cystitis.
Please have a read through the petition text below and click the link to sigh the petition.
Why is this important?
‘Britain’s only clinic specialising in the treatment of chronic urinary tract infections has been closed to new NHS patients for over a year. Hundreds of patients who have been referred to the clinic cannot be seen. They are being denied care and living in agony because they cannot afford to pay for private treatment. This is deeply unethical and unfair. The partial closure of the clinic has also affected its ability to recruit staff and leaves its future uncertain.
The LUTS clinic run by Professor James Malone-Lee is pioneering research and treatment of chronic urinary tract infections which affect hundreds of thousands of sufferers in the UK. This includes infections that have become antibiotic resistant. Chronic UTI wrecks lives. The LUTS clinic is doing vital, life-saving work and needs your help!
After suffering for a year with repeated urinary tract infections, 40-year-old Kirstin Lavender was referred to her local hospital in Yorkshire for an exploratory cystoscopy. Doctors confirmed her bladder was inflamed but didn’t know why. Following this invasive procedure, Kirstin bled for 6 months and her infection symptoms – nausea, fever, frequent urination, urgency and back pain – got so bad she became bed bound.
Repeated tests showed no evidence of infection so Kirstin’s consultant diagnosed the incurable inflammatory condition, Interstitial Cystitis. All doctors could offer her was pain management.
Kirstin’s life was unbearable. She had lost her health, her job and her identity. She was disabled by extreme kidney and bladder pain and facing life in a wheelchair.
Finally, Kirstin persuaded her GP to refer her to Professor Malone-Lee at the LUTS clinic. Here she was diagnosed with a chronic bladder infection that had likely become embedded in her bladder lining. Her infection was complicated but, after seventeen months in treatment with the clinic, Kirstin is healthy, free of pain and has her life back.
In October 2015 – after a single adverse event – the clinic was closed at a day’s notice by the Whittington Trust. Professor Malone-Lee’s patients brought a legal action against the Trust and it reopened the clinic a month later.
Worryingly, 16 months later the clinic remains closed to new NHS patients. Repeated assurances that it would open in April 2017 have come to nothing.
Islington Clinical Commissioning Group is responsible for commissioning NHS services in the borough & wishes to see the clinic become a specialist tertiary provider. The Whittington agrees that it should move to another trust, more suited to supporting such a unique and specialised service. But negotiations with University College London Hospitals have failed due to clinical governance and financial issues and it now looks as though a transfer could take several years to arrange.
While NHS managers stall, hundreds of patients with chronic UTI are being denied treatment. No other clinic treats this way so they have no choice but to wait – in terrible pain with debilitating symptoms – while their condition worsens.’