Resources to support safer bowel care for patients at risk of autonomic dysreflexia

Patients with spinal cord injury or neurological conditions may have neurogenic bowel dysfunction, which often means they depend on routine interventional bowel care, including the digital (manual) removal of faeces (DRF).

Some of these patients, especially those with spinal cord injury above T6, are particularly susceptible to the potentially life-threatening condition autonomic dysreflexia, which is characterised by a rapid rise in blood pressure, risking cerebral haemorrhage and death. A small number of patients who have had a severe stroke or who have severe forms of Parkinson’s Disease, multiple sclerosis, cerebral palsy, or spina bifida may also be susceptible to autonomic dysreflexia.

Autonomic Dysreflexia can be caused by non-adherence to a patient’s usual bowel routine or during or following interventional bowel care. For all of these patients, bowel care is vital for their health and dignity.

Patients have made NHS Improvement aware of difficulties ensuring their regular bowel care is provided when they come into hospital or mental health units, or access other NHS care such as community care. For example, one patient said:

“Despite explaining my situation, I had to wait eight days for an enema. I’d had shoulder surgery so couldn’t do it myself. Had the beginnings of autonomic dysreflexia.”

A search of the National Reporting and Learning System (NRLS) over a four-and-a-half-year period identified 61 reports of significant delays in providing DRF or an appropriate alternative, including three cases of autonomic dysreflexia. Reports came from acute hospitals, community services, and care homes.

The key issues appeared to be a lack of staff with the training and experience
to perform DRF (particularly as opportunities to learn and practice are limited outside of spinal injuries units and community teams who regularly undertake this procedure), or an inability to identify staff with the appropriate training.

The search also indicated:

  • unclear local policies stating who could perform DRF, including the patient’s carers or healthcare professionals from another provider
  • lack of knowledge of relevant clinical guidance
  • uncertainty over requirement for and provision of training
  • uncertainty over using alternative methods of bowel management
  • a mistaken belief that this type of care constitutes assault.

Despite a previous Patient Safety Alert, national clinical guidance, profession specific guidance and patient resources, issues persist that cause patients distress and can put them at risk of severe harm or death. Providers have indicated that additional resources to develop and maintain staff skills in this area would be helpful.

This alert provides links to a range of resources to support safer bowel care for patients at risk of autonomic dysreflexia, and highlights the publication
of NHS England’s Excellence in Continence Care guidance 2018 which addresses how providers can overcome implementation challenges.

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