Retroperitoneal fibrosis (RPF) is a rare disease where inflammatory scar tissue in the back of the abdominal cavity wraps itself around blood vessels, the ureter and nerves. This can cause a range of problems including back pain, kidney blockage or renal failure.
In 2012, we established at Guy’s, the first dedicated multidisciplinary RPF clinic in the UK. Our aim is to improve the care of patients with this disorder by bringing together specialist surgeons, nephrologists, pathologists, rheumatologists and research scientists. The clinic may now be the largest RPF service in the world.
We have now seen over 160 patients in the clinic and have performed complex surgery (ureterolysis) on more than 60 occasions. Robotic 'key-hole' ureterolysis was introduced by Ms Fernando in 2016 with very encouraging early results. Our core approach has been to:
- ensure patients are diagnosed correctly
- understand which patients have most to gain from major surgery
- clarify who benefits from steroid treatment
- minimise the time patients spend on steroids
- limit the time that ureteric stents are needed.
We have also been actively teaching other teams about RPF and are conducting prize winning research into this disease. For those interested in more detail about the challenges in RPF, we suggest reading our article in BJUI 2016. In 2016, we established a patient support group.