Fighting for better bladder management care

“Patients with spinal cord injuries 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 on Thursday evening while addressing healthcare workers.

Dr Wilson spoke on the Best Practice Recommendations for Bladder Management in Spinal Cord Afflicted (SCA) Patients during a webinar, which was sponsored by the Southern African Spinal Cord Association (SASCA) and QuadPara Association of South Africa (QASA), on 29 July 2021.

Her presentation was based on a paper with the same title that was published in 2019 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”. The research paper aims to establish a standard of care and mitigate costly complications.

During her presentation, that was attended by over 100 healthcare workers, Dr Wilson highlighted the importance of Clean Intermittent Catheters (CIC), which is considered the gold standard for care globally. Hydrophilic clean intermittent catheter (HCIC) are recommended for more vulnerable patients.

Fight to prevent reuse

Even when a doctor prescribes intermittent catheters as the method of bladder managements, patients might not be able to afford the number of catheters needed to empty their bladder four to eight times a day. As a result, many patients might opt to re-use their intermittent catheter.

“There is absolutely no reason to re-use a catheter,” Dr Wilson stated passionately during her presentation. She added that there are circumstance when the patient has no other choice, such as in extremely impoverished countries were resources are lacking. However, this comes with serious consequences.

Referring to her own experience with managing patients with a lack of access to resources, some patients experienced up to 10 urinary tract infections per year by re-using their catheters.

Funders gatekeeping access

Unfortunately, funders play a big role in allowing patients access to the devices that they need. Dr Wilson highlighted the discrepancies in the approach funders take. “Without having seen a quote,” Dr Wilson explained that she recently learned the cost of colostomy bags and was surprised to learn that the cost per month would be the same for intermittent catheters. Yet, funders refuse to assist with the bladder management.

Important in all of these discussions, between patients and doctors or consumers and funders, is to remember: “Cost effective and low cost are not equivalent.” Dr Wilson explained that although some bladded management products might cost less than CIC, these might lead to more urinary tract infection, which can be extremely costly when hospital care is required.

Patients have the option to challenge their funders (or medical aid) in order to secure better bladder management. Alwyn Uys, for example, successfully challenged his medical aid to secure more single-use catheters in a month. While he hasn’t reached his goal of having his bladder management fully funded, his story shows what is possible when daring to fight. You can read his full story here.

Education is key

The most important part of any bladder management routine or approach is education. Dr Wilson highlighted the importance of educating the patient about their options as well as the pros and cons – both short and long term. She added that it is important to share the information in a language the patient understands completely so that they full comprehend the risks and advantages.

In addition, doctors should work with psychologists and social workers to identify any patients who have reservations about the suggested care. These patients can be provided with more information or support. Dr Wilson also expressed the value of providing patients with peer support.

To learn more about the specific laws on the rights of patients with spinal cord injuries, register for the webinar on health law presented by Elsabé Klinck on 10 August 2021 at 6 PM. Register for the event here.

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