In February, Fight Bladder Cancer organised a bladder cancer awareness event in the Scottish Parliament, hosted by Stuart McMillan MSP, and attended by Maree Todd MSP, Minister for Public Health, Women’s Health and Sport, as well as other parliamentarians. The Members of the Scottish Parliament heard from patients, nurses, and doctors about the urgent need to raise awareness of bladder cancer, and speed up diagnosis and treatment.
Our reception was a chance for our community in Scotland to come together to raise awareness of bladder cancer symptoms and share patient experiences and healthcare professional perspectives on bladder cancer. FBC CEO Lydia Makaroff spoke about the findings of our Exemplar report, the costs of bladder cancer, and ways to improve bladder cancer care in Scotland.
Bladder Cancer patients Rebecca Smith and Glen Long, shared their own experiences being diagnosed and treated for bladder cancer in Scotland and helped shed some light on the ways the illness can impact one’s life. Glen shared how his one-time episode of bloody urine was the only warning sign he ever got and credited his wife for taking the symptom seriously and thus potentially saving his life. Rebecca shared her own challenges in getting a bladder cancer diagnosis. As a woman, her symptoms were misconstrued as urinary tract infections for quite some time before her doctors recognized something more sinister was going on and she had to have an urgent radical cystectomy. She brought along an empty stoma bag to the Parliament to show MSPs what it looked like!
Consultant Urological Surgeon, Mr Param Mariappan, delved into the difficulties presented by bladder cancer treatment and called for MSPs to champion earlier diagnosis. He explained that too many bladder cancer patients in Scotland are unable to receive any curative treatment (such as chemotherapy. radiotherapy, or surgery) due to being diagnosed too late. Pointing out that Scotland was a significant outlier in Europe, he called for urgency in making sure the Scottish public had more awareness of bladder cancer and its symptoms so patients could get treated at earlier stages of the disease.
Urology Nurse Specialist, Kathleen MacKenzie, spoke about bladder cancer nursing and workforce challenges. In particular, she explained that the lack of trained specialist nurses meant a decrease in the quality and continuity of care for bladder cancer patients in many cases. She also highlighted that the shortage of staff meant more pressure on existing specialist nurses, leading to a vicious cycle of burnout and shortages in the bladder cancer nursing workforce.
MSPs had the opportunity to understand more about bladder cancer and what Fight Bladder Cancer does to support patients by mingling with and having conversations with speakers and other guests ranging from patients, oncologists, carers, nurses, and surgeons. We are hopeful that this event was a stepping stone for more meaningful engagement with the Scottish Parliament going forward.