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The bottom line: why the neurogenic bowel care debate needs more than just puns

It’s all too easy, whilst writing a blog on bowel care to inadvertently resort to puns. After all what’s a conversation about bowel care if we don’t make a lighthearted reference to the ‘bottom line’?

The truth though is that the quality of NHS bowel care provision for spinal cord injured (SCI) people is just too important for punnery. Problems around mobility and access may be amongst the most visible challenges for an SCI person, but our members consistently tell us that good bladder and bowel care – essential care in relation to a fundamental bodily function – are vital to leading a fulfilled life and of at least equal concern.

The loss of normal neurological function  below the level of injury means that most SCI people need to carefully manage their bladder and bowels by adhering to the regimen developed during their rehabilitation. Poor bowel  management can lead to constipation, bloating, abdominal pain or faecal incontinence as well as even more serious issues such as faecal impaction, autonomic dysreflexia or bowel perforation. We also need to remember the sense of confidence, personal dignity and self respect that good bowel care brings to daily life, and the way in which failure to do so impinges on peoples’ abilities to work and participate in society.

Most SCI people find a way that works for their particular needs and establish a routine that works for them. They are, after all, ‘experts by experience’.  Yet when that routine is interrupted, perhaps by a hospital admission, difficulties can rapidly arise.  No nurse deliberately provides poor care but the low status of continence care in the nursing profession, a lack of training, an absence of Trust-wide policies and guidelines in many cases, and a reluctance to continue the patients’ normal routine all contribute to an essential service that is, all too often, failing SCI people.  Our own recent Freedom of Information survey on this issue has shown that 52% of NHS hospital Trusts who responded reported that they have no policy or guidelines in place whilst 41% of trusts did not run courses to train staff in bowel care techniques.

Our members’ experiences of bowel care when they are admitted to their local hospital is all too often not a good one and needs urgent attention. A 2014 SIA bowel management survey of our members saw half of respondents rating bowel management in their hospital as only  0/10 or 1/10 with 40% saying they had developed other complications as a result of the bowel care – or lack of it – they had received.

In the community, we are also getting some disturbing reports of the withdrawal of district nurse provision of digital bowel care for our members, as well as difficulty in accessing suitable training for PAs.

We’re meeting the concerns of our members in typically practical fashion. Our SCI nurse specialists run courses – often with a waiting list – on good bowel care practices , and they advise hospitals on specific patient’s care needs when they hear about them. This week, as the Spinal Injuries Association’s Honorary Lead on Care Policy, I both chaired a Royal College of Nursing  workshop on neurogenic bowel care and gave personal experience of the patient perspective on the  challenges of NHS bowel care. Attendees included 55 senior nurses from around the country and the day saw lively discussion as well as the opportunity to educate on managing neurogenic bowel dysfunction in SCI people.

Patchy NHS provision and poor care must end. We are calling for all NHS Trusts to recognize the importance of good bowel care by having robust policies and practice in place. Nationally agreed and enforceable policies need to be created, nursing staff must be trained to provide appropriate bowel management for SCI people using NHS services and the voice of SCI people heard. Only then will SCI people have the confidence that their essential needs will be met.

The Spinal Injuries Association is working with NHS England and the Royal College of Nursing to dispel the myths and misunderstandings amongst commissioners, nurses and other healthcare professionals regarding neurogenic bowel care and to promote good practice. We are calling upon the nursing profession to treat neurogenic bowel care as “every nurse’s business”, and for digital bowel care procedures to be an integral part of nurse preregistration training in the future.

Rupert Earl