GM Neurogenic Bladder & Bowel Pathway Development

Neurogenic bladder and bowel refer to problems with bladder and bowel control caused by nerve damage, which disrupts the communication between the brain and the muscles that control the ability to pass urine and open bowels. This can lead to symptoms like urinary retention, incontinence, constipation, or loss of bowel control. The effects of neurogenic bladder and bowel can be extremely debilitating, often leading to embarrassment and anxiety for sufferers, with significant impacts on daily life. People with neurological and spinal disorders are also affected by other disabilities which may be physical e.g. loss of limb function; emotional e.g. depression or “hidden deficits” such as cognitive problems, fatigue etc. These impacts can leave neurological patients experiencing poorer outcomes and quality of live without specialist bladder and bowel support.

Neurogenic bladder & bowel is relatively common in neurological conditions, with the majority of patients with Multiple Sclerosis (MS) experiencing symptoms at some point in their lives. The region’s neuroscience centre at Salford Royal Hospital and its local Community Neurorehabilitation Teams manage around 4,644 patients a year with MS, and a further 257 are treated after a spinal injury.

In 2021, a collaborative involving local NHS teams and Coloplast was formed to develop standardised gold standard pathways from acute to community to support the development of a dedicated specialist service for the region. The collaboration was brought together under a Task & Finish Group facilitated by the GMNISDN. Stakeholders include members from the Manchester Centre for Clinical Neurosciences (MS and spinal), clinicians from locality-based Community Neurorehabilitation Teams and local continence nurses, as well as representatives from Coloplast, a company that develops and supplies products for intimate health needs. Pathway development has been clinically led and informed by those with lived experience.

The Task & Finish Group identified that Neurogenic patients suitable for gold standard treatments where not being offered the opportunity to start due to capacity issues internally within the NHS. The collaborative group identified:

• Limited access to acute continence specialist
• No link nurse between acute and community
• Lack of resource, capacity and equipment
• Communication issues across unclear pathway’s & services
• Lack of standardisation/Neurogenic assessment tools
• Pts being referred to various teams / services / attending ED

Prior to the pathway development, MS and spinal patients experienced a postcode lottery of care for their continence problems, with confusing treatment pathways, long waits and no access to a specialist neurogenic bladder and bowel service.

The project has resulted in the launch of a new Greater Manchester Neurogenic Bladder and Bowel Service. It is now operational with plans to expand the service in the next few years. The team includes a specialist nurse plus and administration staff who ensure patients are assessed quickly by the nurse and then provided with the specialist support, continence supplies and education they need.

Currently the service is available for patients in Greater Manchester with MS or spinal injury and it is being closely monitored and measured to help inform the next stages of development. The collaboration will use data from the initial outcomes from the service to develop the next phase which will expand access criteria by either including more neurological conditions or developing needs-based access for a greater number of patients.

Currently the Neurognic Bladder & Bowel service is for MS and spinal patients within the Greater Manchester area. If you wish to refer a patient to the service:

• provide the patient with the What Happens Next information leaflet
• ask the patient to complete the Bladder & Bowel Health Check Form
• complete the referral form
• Email the Bladder & Bowel Health Check and referral forms to: coloplastnursinguk@coloplast.com

All forms and documentation can be found in useful resources below.