As part of the charity’s investigation into the incidence and impact of Ketamine Bladder, Samantha Sherratt, the Urostomy Association’s Transformation Director, interviews Rebecca Kellett, Senior Benign Urology Nurse Specialist at the Royal Devon University Healthcare NHS Foundation Trust.
At what stage in their Ketamine Bladder journey, do most young patients get referred to your urology service?
“I would say that 90% come via ED with either haematuria, abdominal pain, UTIs, nephritis, or because they’re generally systemically unwell. They then get referred to our urology team.
More recently, we’ve been receiving referrals directly from GPs. If GPs are seeing young patients with recurring UTIs and abdominal pain, they’re realising that they need to ask about ketamine use. Or they may have done a renal ultrasound and found a thickening of the bladder. For a 17-year-old, for example, that pathology is unusual.”
Please describe your patient cohort
“I have responsibility for 50 patients; aged 16 to 35. They’ve already got to crisis stage before we see them.
About 50% of the patients I see are experiencing mental health problems associated with some traumatic background, which is why they’re taking ketamine in the first place. I’ve only had the odd patient who took ketamine recreationally, and it got out of control.
Most don’t seek help earlier because they feel like they’re going to be judged or they’re just acutely embarrassed. They think ‘I brought this upon myself’.”
What is the incidence of patients presenting with Ketamine Bladder in your area?
“There’s a definite upward trend. I’d say that we’ve seen 50 young patients over the past year. Devon has a higher percentage than the national average of ketamine users; I think Dorset’s experience is similar.”
What are the main challenges ahead for professionals supporting Ketamine Bladder patients?
“This is an increasing public health issue, and we need a huge Multi-Disciplinary Team approach.
The BAUS Consensus [the British Association of Urinary Surgeons’ guidelines which lay out the treatment pathway] is a great step forward, but sometimes our teams just can’t provide the support stipulated in the time required. For example, waiting times for the pain clinic can be over a year.
So while our patients wait, we refer them back to their GPs who can’t necessarily help. This causes a ripple effect; they can’t get the pain relief they need so they take more ketamine.
They’ve got to be monitored every three months for liver function. They’ll then go to gastroenterology with liver problems, many of my young women suffer from malnutrition and eating disorders.
They also need mental health support. These services are under pressure nationally, but here in Devon its much worse. Together (our local drug and alcohol support agency) can help from an addiction point of view, but they need support from mental health services to address the underlying reason why people resort to ketamine.
We need a psychologist who’s solely related to urological problems and bladder symptoms.
What are the main challenges for young people with Ketamine Bladder?
“Coming off ketamine is imperative, but as they wait for or undergo treatment, young people need help to manage their bladder pain. We need an immediate pain protocol that runs alongside the longer pathway detailed in the BAUS Consensus.
For example, the Consensus mentions Elmiron as a possibly supportive drug. But patients might have to wait three to six months before they see any therapeutic effect, if they see any benefit at all. My patients are unlikely to comply with that. Patients need coping strategies to avoid going back to ketamine, which undoes all the progress that you’ve done to make their symptoms better.”
Are many Ketamine Bladder patients requiring nephrostomies?
“About a fifth of my patients have got to the crisis point of needing to be nephrostomised. We have a dedicated nephrostomy service at Exeter, and our team kindly support them. Our community nurses also help to make sure that their dressings are changed, flushed if needed and that they’re getting their nephrostomy supplies.
It isn’t traditional for community nurses to give this level of support because our patients are ambulatory. In a lot of areas, there is a lack of nephrostomy care or a dedicated nephrostomy service.”
Where do you refer people for additional support?
“Abstinence is key, no matter what we do as a urology team. But Together says that their ketamine users don’t easily engage with their services, because they get too embarrassed, or they feel so debilitated that they can’t attend group sessions.
It’s so important for us to work collaboratively to improve this for ketamine users. Together can now directly refer to us, and vice versa. The idea is to get them more quickly re-engaged in rehabilitation, so they don’t get to the acute phase of ketamine uropathy.”
Are you seeing an increase in young patients receiving urostomies or other urinary diversions?
“I don’t know how many of my patients will get that far. I think many will die first. Even if they have surgery, how do we best support them to refrain from taking ketamine in the future?”
Last words
“There’s a long learning curve ahead of us. We can have guidelines and pathways, but a good proportion of my patients are in so much pain or mental health issues that they continue to take ketamine as a coping mechanism.
We don’t currently know, even if they give it up, will they have baseline bladder function again, or be symptom free? I feel like we’ll see this patient group for quite a large trajectory of their lifetime.”
