Spinal cord injuries (SCIs) are accompanied often by other conditions due to the damage caused to the nervous system. A common resulting condition is neurogenic bladder, which impact the individual’s ability to control their bladder. People with neurogenic bladders rely on alternative methods to empty the bladder, such as intermittent catheterisation.
These invasive methods required can result in numerous complications, such as urinary tract infections (UTIs). Dr Virginia Wilson and her research team identified the level of care provided to people with a SCI and neurogenic bladder in South Africa as a big contributing factor to the number of UTIs and other complications experienced.
By addressing the method of bladder management, regularly checking in with the patient and providing better education, Dr Wilson believes that medical staff can empower their patients to take better care of their bladder health.
“Patients with SCIs are a small percentage of the population with a long-term disability. So, it is up to us, as clinicians, to really empower and engage with our individual patients to provide them with knowledge on managing their bladder to enable them to fight to receive the best bladder management services,” Dr Virginia Wilson said while addressing over 100 healthcare workers in a webinar sponsored by the QuadPara Association of South Africa (QASA) and the Southern African Spinal Cord Association (SASCA) held in July.
Research paper get the ball rolling
It started when former QASA CEO and disability activist Ari Seirlis approached Dr Wilson about the gaps in the care provided and access to services. She put together a diverse research team, the Continence Advisory Panel (CAP), who, collectively, published a paper in 2019 titled: Best practice recommendation for bladder management in spinal cord-afflicted patients in South Africa.
The goal was to address the “significant gaps in practice, and challenges regarding levels of care and access to services and supplies specifically related to the neurogenic bladder”. They wanted to establish a standard of care and mitigate costly complications, such as infections.
Revising bladder management
Bladder management takes place in three stages: Acute, rehabilitation and discharge. During the acute stage, the patient often has an indwelling urethral catheter. Dr Wilson and her team warned against the prolonged use of indwelling urethral catheters as it can harm the urethra.
Instead, it is recommended to move the patient to less intrusive bladder management methods as soon as possible. Before this can take place, Dr Wilson and her team recommends an urology study to determine the capacity of the bladder: how much it can hold; how the bladder empties; and the ability of the patient to do so independently.
This important study needs to take place as soon as possible after six weeks from the patient’s initial hospitalisation and within three months. Dr Wilson said: “Every quadriplegic is not the same and every paraplegic is not the same.”
Identifying the needs of each individual patient is crucial to providing the best bladder management. While there are several options available, clean intermittent catheterisation is accepted as the gold standard for managing a neurogenic bladder worldwide. Unfortunately, not all patients chose this method – for whatever reason.
“We need to respect the decision of the patient,” Dr Wilson said. “The best that you can do is to educate the patient. The dangers of indwelling urethral catheters are not really discussed with the patients.”
Following up with the patient
While addressing healthcare workers, Dr Wilson noted that the COVID-19 pandemic has altered the way in which many doctors operate. It is not uncommon now for medical staff to contact patients through messaging apps like Whatsapp – an approach that Dr Wilson has used herself to regularly follow up with her patients.
When checking in, she found that patients would raise issues that enabled her to mitigate many of the challenges and issues. She said: “Don’t leave your patient to their own devices. Following up is extremely important – especially if you can refer your patient to an urologist.”
While the medical staff play a key, essential role in the patient’s bladder management, they are only able to guide and advise the patient, who, in the end, is responsible for the daily management. Thus, education is crucial in providing the patient with the knowledge and skills to care for their bladder.
Educate, educate, educate
Medical staff need to support patients by providing them with all the information on the various bladder management methods (including benefits and risks both short and long term); educating them on how to correctly use the bladder management devices that they chose; and providing support in the patient’s pursuit of securing funding for their bladder management.
For patients to make informed decisions on their bladder management, it is important for medical staff to provide them will all the necessary information. This goes beyond simply educating them of the methods available. It also includes detailed explanations of the pros and cons – both short and long term – of the suggested bladder management options.
This information needs to be communicated in a language that the patient understands. This is particularly important in a country with 11 official languages and doctors often communicating with patients in their second or third language. The support from staff members play an important role. They can assist with translating, for example.
In addition, especially during rehabilitation when a multidisciplined approach is taken, the team can ensure that the patient communicates their questions, concerns and needs.
Catheterisation is an extremely personal process. Psychologists, for example, can assist patients with communicating their concerns. With other staff reaffirming the information provided by the doctor, patients might feel more reassured.
Ensure patients are skilled
Patients with neurogenic bladders need to fully understand how to use their catheter correctly and safely. Even when doctors prescribe single- use clean intermittent catheters, some patients reuse their catheter – a dangerous practice.
Potentially, the patient is motivated to reuse their catheter because they are unable to afford the four to eight catheters recommended per day. Nevertheless, Dr Wilson warns against this trend: “There is absolutely no reason to re-use a catheter.”
Among her own patients, Dr Wilson has found that reusing a catheter led to patients experiencing up to 10 UTIs per year. Educating the patient, caregiver and family on the importance of correctly using a catheter can help prevent misuse.
Peer support can also play a vital role in educating patients. Speaking to someone who also has a neurogenic bladder could make it easier to understand the challenges, get advise on the best approaches and learn from their peer’s mistakes.
Fighting the good fight
Unfortunately, no amount of education, training and support can bypass the challenge presented by a lack of funding. The refusal of funders to support patients with neurogenic bladders by fully funding the cost of their catheters or refusing services present a big challenge to medical staff.
However, healthcare workers can support patients in challenging funders (for example, medical aids) by providing motivation for certain services. South African para athlete, Alwyn Uys, for example, has successfully challenged his medical aid to secure more funding for his single-use catheters.
Important in all of these discussions is to remember: “Cost effective and low cost are not equivalent.” Dr Wilson explained that although some bladded management products might cost less than intermittent catheterisation, these might lead to more UTIs, which can be extremely costly when hospital care is required.
Passionate staff are the change
“You don’t need a passionate urologist. You need passionate staff and doctors,” Dr Wilson concluded during the webinar in July. She added that there are various resources available for the staff who want to provide better support. The manufacturers of catheters, for example, can provide staff with more information and training on the products.
Whatever approach medical staff decide to take, it is important to continue the education after the patient’s rehabilitation.
Best practice recommendation for bladder management in spinal cord-afflicted patients in South Africa (Research paper): https://bit.ly/3xyn5hf
Best practice recommendation for bladder management in spinal cord-afflicted patients in South Africa (Webinar): https://bit.ly/3A103B8
Challenging your medical aid (Alwyn Uys’s story): https://bit.ly/37gGEzT