How to manage bladder problems and UTIs remotely
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Mark Webb told delegates about his experience of having a suprapubic catheter (SPC) inserted during lockdown.
Diagnosed with relapsing remitting MS in 2007, Mark was confirmed as having secondary progressive on account of bladder weakness in 2019.
He has been self-catheterizing for about eight years, but did suffer from regular urinary tract infections (UTIs) including “two or three really bad ones”.
“The impact of a UTI on me is essentially a high fever. And when I have a high fever my spasms go into paralysis down the left side to the extent that I need morphine because the pain and the intensity of the paralysis is so strong,” he said.
He said the run up to the procedure and the procedure itself went smoothly, he said, adding that his experience with the continence service was all very normal and “didn’t feel very lockdown”.
“The challenges I had were elsewhere, for example with MS nurses and the GP practice. I couldn’t have that joined up conversation to sanity check what I was doing, to find out how tough it would be etc,” said Mark.
“I didn’t have any problem getting processed through the system and having an SPC inserted. But I didn't really feel I had the support network around me that I might have had in any other year.”
Mark spoke about negative experiences shared by members of Shift.ms, a peer support and networking platform. They include the cancellation of Botox bladder injections and the cancellation of ISCT training, with little to no communication.
“No one is angry, we all understand why these things are happening, but they are just two examples of what has happened because of what is going on in the world,” said Mark.
Bladder dysfunction management options in MS
Healthcare professionals should take a patient-centred approach to bladder dysfunction, said Collette Haslam.
Describing the patient journey, she said there are a range of different management options.
“I always reiterate that these options are not suitable for everyone. It must be an individual approach.”
Colette’s advice on bladder management scale-up included:
- test for a UTI if someone presents with urgency and/or frequency
- always assess post-void residual using a bladder scan or an in/out catheter – this will help determine the right treatment
- look at conservative interventions, such as fluid advice and pelvic muscle training, first
“We really need to get back to basics with an awful lot of patients. The majority of our patients will not drink enough because they think the more you drink the more they have to go to the toilet,” said Collette.
She added that it was always useful to ask the patient to fill in a bladder diary to get a better idea of habits, identify quick fixes, and to track response to interventions
Most patients will start on an anticholinergic medication but it’s important to note that:
- these drugs have side effects
- they can raise post-void residual levels
- they are not usually suitable for people with pre-existing high post-void residual levels
- patients should be followed up
Tibial nerve stimulation is another option, usually employed if medication is either contraindicated or ineffective. During the pandemic, there has been an increase in demand for transcutaneous tibial nerve stimulation, which can be delivered at home.
Self-catheterization is usually “the next step”, though many people are interested in this option earlier on in the pathway.
“Personally, I think it depends on the patient’s symptoms and how they are managing on a day-to-day basis,” said Collette.
“There are many different catheters out there and one is not suitable for everybody. It’s about getting to know your patient, their home circumstances, and their daily practice.”
Most centres specify that patients should be able to self-catheterise before having bladder Botox injections for overactivity, urgency, or incontinence, Collette went on. The injections are usually administered every six months, but the pandemic has caused delays.
Most people are better managed without more invasive approaches, such as SPC, sacral nerve stimulators, and surgery, she added.
Human cost of admissions
Dr Niraj Mistry illustrated the human cost of MS-related bladder dysfunction by sharing a case study.
The man, who was first seen in clinic at Queen Elizabeth Hospital Birmingham, in 2008 at the age of 37, has experienced frequency and urgency since diagnosis.
His notes show he was admitted to hospital in May 2009 with constipation having not opened his bowels for five days.
It was the first of 13 A&E admissions relating to bowel and bladder issues, including five in 2020 alone, said Niraj, adding that the man was still an in-patient following an emergency admission in December.
Decade of problems
The patient’s “life-long problems with urgency” had worsened with the onset of MS and had a huge impact on his quality of life.
Pointing to clinic notes from 2010, Niraj said: “What stands out to me is that he is still working as a manager in his plumbing company. He is finding it really embarrassing, unsurprisingly, when he has episodes of incontinence in his clients’ homes.”
MS nurse notes, from two years later, show that the man, who at that point was receiving Botox injections and self-catheterising multiple times a day, experienced a UTI once every three to four weeks.
Between December 2018 and December 2020, he was admitted to A&E six times. During the two most recent admissions, he has tested positive for SARS-CoV-2 and been diagnosed with sepsis, respectively.
“He is still an inpatient. I saw him this morning and we're desperately looking for ways to avoid another admission. It is a very whistle-stop tour, but I think it illustrates the problems,” said Niraj.
Lockdown project: Home urine testing kit
Home urine testing kits helped people to stay in control of their MS management during lockdown.
Ruth Stross spearheaded the project to provide quality care to those with a suspected UTI or relapse who were unable to attend clinic due to infection control measures.
She worked with the MS Trust, the Neurology Academy, and local teams, including the neuro continence nurses, to build five “trial packs”, which included patient information and instructions.
Following positive feedback from people with MS, the scheme was then launched more widely, with funding provided by pharma and the local MS Society branch.
How does it work?
- The kits, which cost £4 to £5 each, are targeted at people at a high risk of UTI/ admission
- They are sent via the post or with physiotherapists conducting urgent home visits
- The patients follow the instructions and email the results to a dedicated email address which is checked five days a week
- Results are fed back to the GP or neurologist, as required
- Patients are signposted to out of hours services
How was it received?
Ruth said the scheme had received “really encouraging feedback” and an “empathic thumbs up”.
“People felt they were much more in control of their MS and how to manage it,” she said.
This meeting has been sponsored by Roche Products Limited and Bristol-Myers Squibb Pharmaceuticals Limited. The sponsors have had no control over the educational content of this activity.
MS Specialist Nurse, Epsom and St Helier University Hospitals NHS Trust
Clinical Nurse Specialist in Uro-Neurology, The National Hospital for Neurology and Neurosurgery Dr Niraj Mistry
Consultant Neurologist, University Hospitals Birmingham NHS Foundation Trust Mark Webb
Head of Comms, Shift.ms
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