Neurogenic bladder dysfunction (NBD) and neurogenic lower urinary tract symptoms (LUTS) occur when a person develops bladder problems because of disease or injury to the central nervous system or the peripheral nerves involved in the control of urination. There are multiple types of neurogenic bladder dysfunction and resulting symptoms are dependent on the underlying cause. Millions of people are affected, including those with multiple sclerosis (MS), Parkinson's disease and spina bifida. NBD can also affect people who have had a stroke, spinal cord injury, major pelvic surgery, diabetes or other illnesses.
Bladder dysfunction has a wide-ranging negative impact on patients' quality of life (Browne et al, 2015, Lakin et al, 2021) and common characteristics of the neurogenic bladder include impaired bladder function, high intravesical pressures and urinary retention with the need for catheterisation. There is a significant increase in the risk of urinary tract infections (UTIs) and, aside from this, bladder problems are one of the leading causes of emergency hospital admission in conditions such as MS and Parkinson's disease (Thomas et al, 2022a). Symptoms of the neurogenic bladder include urge and stress incontinence, as well as a failure to empty the bladder. Management may include pharmacological and non-pharmacological interventions.
The quality of continence care has been under scrutiny for decades, with the service inequity that exists across the UK recently highlighted (Booth et al, 2021). Despite recommendations by the National Institute for Health and Care Excellence (NICE) (2012) and by the All Party Parliamentary Group for Continence Care (2011), there seems to have been little heed paid to what a quality, cost-effective bladder and bowel service should look like.
The Francis report (2013) referred to continence as ‘this most basic of needs’. Failure to manage what is largely preventable and treatable can result in falls, pressure damage, moisture lesions and premature death.
The need to focus on better management of the neurogenic bladder in MS has been brought into the spotlight following annual examination of NHS Digital's MS Hospital Episode Statistics (HES), which have consistently shown a large number of emergency hospital admissions for bladder-related issues. In England alone, using HES statistics, of the 105 400 people living with MS, nearly one in five (18 910) were admitted to hospital as an emergency in 2020-2021 (Thomas et al, 2022b). The most common reasons were urinary tract and respiratory infections.
MS and the neurogenic bladder
MS is a chronic inflammatory condition, affecting the central nervous system, which leads to the formation of lesions in the white and grey matter, as well as diffuse damage and neurodegeneration of the whole brain and spine (Lassmann, 2019). This invariably causes neurological dysfunction, which has varying effects and involves motor and sensory changes, including ‘invisible’ symptoms such as bladder and bowel dysfunction.
One in 10 people with MS report bladder symptoms at the time of initial diagnosis (Panicker, 2020) and the prevalence of bladder dysfunction increases with the duration and severity of the condition, correlating with the extent of damage to the spinal cord. Nearly all patients will have some bladder symptoms after living with the condition for 10 years (Panicker and Fowler, 2015; Tornic and Panicker, 2018).
Neurogenic bowel dysfunction can also affect between 39% and 73% of people with MS (Preziosi et al, 2018), with symptoms ranging from constipation, faecal urgency and incontinence to evacuatory difficulties. These symptoms also frequently co-exist. Damage to the central nervous system in MS also has a profound effect on the function of the large bowel and maintenance of continence. Bowel motion transit time through the large bowel can be reduced, causing constipation and impaired anorectal control and function.
From a patient perspective, the psychological and physical distress in individuals with bladder and bowel dysfunction experience is immense. Constipation can cause chronic pain and, without intervention, may lead to haemorrhoids, anal fissures and rectal prolapse. Bladder and bowel problems can make it difficult to travel and socialise because of the necessity to identify accessible toilets.
Although bladder and bowel problems are frequently experienced by people with MS, many do not always feel comfortable discussing them. A lack of time and competence to understand management may also lead to a delay in health professionals discussing symptoms, despite national guidance and guidelines (NICE, 2012; 2022) and consensus documents highlighting the importance of doing so (Thomas et al, 2022a).
MS is also a condition affecting younger people, who may be working and have young families, therefore the distress caused by bladder problems could be profound and impact on work and family life (Table 1).
Table 1. Number of people newly diagnosed with MS each year in the UK (average 2012–2017)*
| Age | Women | Men |
|---|---|---|
| Under 30 | 940 | 310 |
| 30−34 | 660 | 210 |
| 35−39 | 490 | 230 |
| 40−44 | 650 | 280 |
| 45−49 | 660 | 300 |
| 50−54 | 490 | 300 |
| 55−59 | 340 | 160 |
| 60−64 | 260 | 110 |
| 65+ | 280 | 110 |
| Total | 4770 | 2010 |
| Total persons | 6780 | |
At present, many people with MS are failing to receive appropriate bladder and bowel management and are left thinking that these problems are inevitable and untreatable, and that they have to ‘live with the problem’.
NHS England commissioned the National Bladder and Bowel Health (NBBH) project (NHS Supply Chain, 2019) to improve continence care across the whole health and care system. Led by NHS England, it aims to research and implement recommendations from the Excellence in Continence Care (EICC) report in 2018 (NHS England, 2018). The NBBH project was delayed by COVID-19, but its objectives are to:
- Understand patient needs
- Improve patient safety and outcomes
- Agree national standards
- Promote best practice.
Recognising the need to raise awareness of the problems with the MS bladder, in 2021 a consensus group formed to update the original MS bladder management guidelines (Fowler et al, 2009). The MS Bladder Group membership included MS clinical specialists, bladder and bowel specialists and patient representatives. The review was completed and published early in 2022 (Thomas et al, 2022a). The consensus guidelines made a number of recommendations for improved management of people with MS, one of which was the development of bladder management pathways.
Care pathways are considered to be one of the best tools health professionals can use to manage the quality of healthcare in relation to the standardisation of care processes since they promote organised and efficient care, based on evidence. Implementation can also reduce variability in clinical practice and promote better patient outcomes – something the consensus group wished to achieve. Although an optimum MS patient pathway had been developed nationally (National Neurological Advisory Group, 2019) by a group of specialist MS health and care professionals, MS patient groups and people with MS, this did not cover bladder management explicitly and a number of sub-pathways were required to provide greater detail for patient management. The main goal of care pathways is to enhance care processes in three areas:
- Quality in healthcare
- Co-ordination/co-operation among professionals
- Efficiency and patient satisfaction.
Care pathways can be powerful tools for care process management. They allow health professionals to collaborate on the care being given and check compliance to all interventions included in an individual's care plan, as well as improving care standards and introducing clinical audit as a part of the process.
Development of the pathways
Following publication of the bladder consensus guidelines (Thomas et al, 2022a), the consensus group began to address the recommendations made for action. The first priority was the development of MS bladder management pathways, the methodology used for this is depicted in Box 1.
Box 1.Method used for creating the consensus bladder pathway
Review of the literature
| Initial steps |
|---|
|
| Consensus meeting |
|
| Post-meeting |
|
| Second consensus meeting |
|
| Completion of pathways |
|
The objectives for developing the pathway were
- To agree the main pathways required in MS bladder management
- To enhance care processes and the quality of healthcare for people with MS through a pathway approach
- To highlight where improvements can be made in current bladder management
- To establish co-ordination and co-operation among professionals involved in MS management
- To lead by example, establishing examples of good practice for MS bladder management.
The pathway consensus group felt a single bladder pathway was insufficient to meet the needs of MS patients and as well as pathway development, further information and resources needed to be incorporated into the work. The overall Bladder Management for People with Multiple Sclerosis Pathway document was developed as an interactive PDF so that it can be viewed through a web browser (Bradley et al, 2022). Figure 1 highlights the overview pathway, which leads from the initial patient diagnosis through to the other main pathways:
- Health promotion pathway
- Assessment pathway
- Clean intermittent self-catheterisation pathway
- Urinary tract infection pathway.
The overview pathway
The overview pathway is provided at the beginning of the resource (Figure 1). A number of information icons throughout the pathway take the reader to further detail. It includes key performance indicators (KPIs), for example that there should be a maximum wait of 18 weeks for patients to be seen, although it highlights this ideally would be no longer than 4 to 12 weeks. As an example of good practice, the Leeds MS service sees patients within 4 weeks (Metcalfe and Owen, 2021). The consensus pathway also highlights the health professionals who will typically be involved in patient management along the pathway and who might be the ones to whom the patient highlights their symptoms.
The health promotion pathway
The second pathway is a bladder health promotion pathway (Figure 2) to help both health professionals and people with MS to recognise bladder symptoms as they arise in the course of the disease trajectory. There is emphasis on ensuring that, early in a person's MS journey, health professionals should stress the importance of being aware of bladder problems and the lifestyle management techniques to help them. They should also provide a bladder awareness pack or leaflets about bladder health in accessible formats. Both the MS Trust and MS Society have useful information about dealing with bladder problems.
All people with MS should receive at least an annual review of their condition (NICE, 2022), and at this review bladder and bowel function should be part of discussions. Use of pre-clinic questionnaires may assist with this and examples of these are provided in the resources section of the pathway.
The Consensus Group highlighted on numerous occasions that bladder issues can be embarrassing for patients, making them reluctant to discuss them (Thomas et al, 2022a). Overcoming these barriers requires them to be discussed by health professionals as early as acceptable to the person with MS, with care, sensitivity and empathy.
The assessment pathway
A comprehensive bladder and bowel assessment is crucial to assist in management of the neurogenic bladder and while the assessment pathway is streamlined (Figure 3), the icons within the pathway lead nurses to more detail to ensure they feel confident to undertake an assessment.
The basic continence assessment should comprise:
- A complete medical, surgical and obstetric history, with details of allergies, mental health, mobility, dexterity, body mass index and cognitive and social issues
- Information about the duration of the problem, symptoms/presentation, effect on quality of life and current management
- Details of all medications, including over-the-counter medications, herbal remedies and recreational drug use
- A completed diary (3 days for bladder problems and 1 week for bowel problems), or an observational chart completed by carers/professionals if an individual is unable to complete a diary independently
- Details of fluid consumption (including amount and type of fluid) and dietary input
- Dipstick urinalysis (which is used as a screening test rather than a diagnostic test) to rule out dehydration and other medical issues, especially if there are new continence issues (including renal problems, diabetes and potential UTIs)
- Examinations (vaginal/rectal/abdominal/neurological), if required, conducted by a competent professional
- Bladder scans – if presenting with recurrent UTIs, to check for signs of incomplete emptying or underlying neuropathy
- Environmental factors that may affect continence, such as access to toilets, room sharing, chair/bed heights, toilet height, space to accommodate equipment (such as walking aids/wheelchairs), floor surfaces, and unclear signage.
The clean intermittent self-catheterisation pathway
The consensus guidelines (Thomas et al, 2022a) reinforced that clean intermittent self-catheterisation (CISC) remains the gold standard treatment pathway (Figure 4) for people with MS who are unable to empty their bladder, as earlier highlighted by Fowler (2009) and Tornic and Panicker (2018).
CISC has been shown to significantly improve quality of life, enhance independence and reduce episodes of incontinence and the impact of lower urinary tract symptoms in people with MS (Blok et al, 2022), with the added benefit that they are able to self-manage and retain independence (Yates, 2016).
Resources explain how to teach CISC and provide a KPI for follow up – a crucial element if people with MS are to adhere to the procedure. It also highlights some of the dexterity issues that might impact on the individual, outlining interventions that can help, such as improving postural control when sitting on the toilet or commode, equipment such as stiffer catheters that are easier to insert or catheters with an aiding device, or referral to a physiotherapist.
The urinary tract infection pathway
As a common reason for hospital admissions in MS is a UTI is was felt important to include a UTI bladder management pathway (Figure 5) within the set of bladder pathways.
UTI hospital admissions for people with MS have been rising year on year, placing a large strain on the NHS. Some 18 910 people with MS were admitted to hospital as an emergency in 2020-2021. UTIs cost £2636 per admission, while bladder and bowel issues, such as blocked catheters and constipation admissions, collectively cost £6.9 million (Thomas et al, 2022b).
Aside from the distress to people with MS, early detection is important, as evidence shows that the development of UTIs can result in urosepsis and its potential sequelae, which include hospital admission, systemic sepsis, multi-organ failure and can also lead to increased mortality (Porter et al, 2019). Proactive bladder management in MS is therefore essential.
The MS UTI pathway (Figure 5) was adapted from the NICE pathway for UTIs (NICE, 2018) and provides illustrations of the care requirements for people with MS with and without catheters as well as resource links that include information about UTI self-testing kits for patients. The pathway highlights the importance of NHS trusts tracking and highlighting recurrent admissions of people with UTI/sepsis as part of a trust's safety thermometer for UTIs or the national database of recurrent UTIs or catheter associated urinary tract infections.
Follow up
An essential but often missed part of bladder management is patient follow up, especially if interventions such as CISC are required. Many patients stop CISC simply because they are not confident doing the procedure. Follow up can provide significant reassurance and ensure that they maintain this.
The European Association of Neurology guidelines recommend regular close surveillance of bladder dysfunction in people with MS throughout each patient's lifetime (Blok et al, 2022). The recently updated NICE MS guideline (NICE, 2022) is much more comprehensive than the previous guidance and includes information about what should be included in the patient review, recommending reviews occur at least annually. There is a strong emphasis on encouraging a disease-modifying lifestyle and supporting the mental health of people with MS, as well as supporting carers.
Not every person with MS will be in contact with specialist health professionals (Thomas et al, 2022a), therefore it would be useful for health professionals such as district nurses, practice nurses and healthcare support workers to be ‘bladder aware’ in MS so that opportunistic questions about bladder symptoms can be included in any discussions. These might include raising possible issues such as frequency, urgency, nocturia and any recent history of UTIs, which might highlight any bladder dysfunction and lead to further investigations.
Conclusion
The consensus bladder pathway aims to raise awareness of the importance of the bladder problems that can arise in people with MS and how these can be managed (Bradley et al, 2022). Taking a proactive rather than a reactive approach to bladder management will provide significant benefits, not only for people with MS but for the NHS as a whole. It is important that all nurses ensure that these sensitive issues are discussed with their patients to improve quality of life. The consensus group hopes that the consensus document and bladder pathways will ensure all health professionals working with people who have MS are ‘bladder aware’.
Links to useful resources can be found in Box 2. The pathway can be found at www.bladdermanagement.co.uk and will be reviewed again for accuracy in July 2023.
Box 2.Sources of information on bladder management
- The bladder management consensus guideline – Expert Opinion Consensus Document. Management of bladder dysfunction in people with multiple sclerosis):https://www.magonlinelibrary.com/pb-assets/BJON/BJN%20Consensus%202021_Hollister-1643649600217.pdf
- Continence education: https://www.hollister.co.uk/en-gb/continencecare/continence-clinical-education
KEY POINTS
- Neurogenic bladder dysfunction is common in people with multiple sclerosis (MS) and has a negative impact on quality of life
- The Bladder Consensus Group agreed the main pathways required in MS bladder management
- It is hoped that the five pathways will help all health professionals to be ‘bladder aware’ and take a proactive approach to discussing potential and actual bladder problems sensitively with people with MS
CPD reflective questions
- How might bladder dysfunction impact on a young woman aged 24 who has MS? List the potential problems that she might face in her home and work life. What advice might be available to her to cope with these issues and where could she get this?
- The consensus guideline is free to download. Using this guideline, list the different types of bladder problems that someone with MS might develop and what questions you would ask to assess someone presenting with bladder symptoms
- What advice on having a healthy lifestyle and health promotion information could you offer to your patients to maintain a healthy bladder and bowels? What bladder symptoms should you warn them about so they seek help at an early stage if they arise?