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Patient voice

‘Not having the right bowel care is demeaning’

  • 16 Comments

Reg Penn, who is paralysed from the chest down discusses his distress at the bowel care he recently received

The patient

I was 18 years old when my spinal cord was almost completely severed in a road traffic accident in 1975. I’ve some movement in my arms and can breathe by myself, but can’t move my hands or legs.

A district nurse visits me once a day and carries out a manual evacuation.  Normally this works fine. However, in 2009, due to a reduction in the amount of time the nurse was allowed to support me I developed compacted bowels.

I was admitted to hospital and given a phosphate enema, which treated the problem.  However, after a few days in hospital, where I was eating a normal diet, the problem started to build up again.  I asked the nurses: “What are you going to do about my bowels?” and they said they were not allowed to do manual evacuations - even though the doctor thought they should – because it was an invasive procedure and they could be sued if anything went wrong.

My mother offered to do the evacuation, but was told she couldn’t for health and safety reasons. Staff knew I would only develop a compacted bowel again if I didn’t have an evacuation, and yet they weren’t prepared to do it. So they discharged me.

Last year, I was admitted to hospital with pneumonia, and again developed compacted bowels because I had no bowel care. I was given the same excuses, just from different people.  

Being in this situation saps your confidence. To keep your bowels moving you’re loaded up with laxatives. This makes you frightened to breathe or cough. On one occasion I was put in a hoist and left hanging in a sling with a bedpan on the bed beneath me.  I spent that time in hospital hoping I’d get through the experience without making too much mess.

Nurses no longer seem to be doing manual evacuations, but you can’t just abolish a procedure and replace it with nothing.  Each hospital department needs at least one person trained in manual bowel care.

Some healthcare professionals don’t seem to understand the importance of bowel care for people with spinal injuries.  You’re not just treating someone who needs a bit of help because they’re feeling weak after an operation – you’re dealing with people who do not have full sensations and need special support.

Not having the right sort of bowel care is a demeaning experience. I don’t like to think about the incontinence side of my injuries as a manual evacuation is a degrading procedure. But it is one that has to be done. 

Expert comment

Nurses in specialist spinal cord injury settings will find Mr Penn’s report depressingly familiar. It seems nurses in general hospitals demonstrate an almost universal lack of understanding of neurogenic bowel dysfunction (NBD) and an equally universal reluctance to undertake the necessary steps to manage it effectively.

Nearly all individuals with spinal cord injury suffer NBD, which places them at risk of severe constipation and faecal incontinence due to loss of sensation and muscle control. During specialist rehabilitation they develop a “bowel programme”, which puts them in control of their bowel, restores their dignity and maintains their health. This programme may be self or carer-delivered. Programmes usually include several interventions, the most common being manual evacuation or “digital removal of stool” (DRS).

While the benefits of DRS are well-documented, a rumour persists that DRS is unacceptable, illegal or an “assault”. This is not true. DRS is a safe, effective method of emptying the rectum for people with NBD. Not providing regular emptying of the rectum sentences patients to the indignity of faecal incontinence and the health risks of impaction - for individuals like Mr Penn who have high spinal cord injury these include autonomic dysreflexia with risk of stroke and death.

Managing bowel dysfunction is part of the holistic nursing care of any individual - its importance to physical and psychological health, dignity and quality of life are clearly illustrated in this patient’s story. Such cases also come at a cost to the NHS, as lack of care results in unnecessary hospital admissions. The nurses this vulnerable patient encountered failed to meet his needs and to treat him with the dignity we all deserve. These nurses placed themselves at far greater risk of legal action by refusing to provide appropriate care to maintain dignity, continence and health than they would have done by providing DRS.

Learning points

Maureen Coggraveis clinical nurse specialist, The National Spinal Injuries Centre, Stoke Mandeville Hospital, senior lecturer, Buckinghamshire New University, and visiting lecturer, King’s College, London

  • 16 Comments

Readers' comments (16)

  • DRS oops! wrong button

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  • Anonymous | 1-Apr-2011 12:39 pm

    then there must be some specialists always available to carry out this task for patients as and when required. Am I right?

    It is not a procedure that can be postponed until later or until tomorrow or even next week at the convince of the staff. Imagine yourself what it is like to be constipated, a sensation we have all felt at one time or another. Then imagine if for reasons of muscle paralysis, neurological damage or the elderly not being able to push and eliminate the stools which then become so impacted that they cause a blockage which in turn causes a harmful build up of pressure on other tissues and organs, and pain (which may not be felt in paralysed patients), abdominal distention and failure to eliminate toxic waste, which may eventually require surgical intervention.

    Supps, laxatives, enemata, etc. may liquefy faeces which then may run out around the blockage without moving the blockage itself. what does this do for the health, well-being and moral of the patient which can severely disrupt his normal but reduced daily functioning, activities and enjoyment?

    Imagine letting yourself or your child get into this state?

    It is not the fault of nurses if their training is inadequate or if they are required to follow local health and safety rules, but their attitude that they can do little about it, the reasons they give and the lack of realization or caring of the effect on the patient is their responsibility as is advocating for their patient if they are prevented from carrying out a procedure essential for their care.

    If some 'qualified' nurses are 'unqualified', unskilled on not competent to carry out the procedure then it is their duty to find somebody who is and at a time when it is required by the patient. Futhermore it has to be remembered that if the patient has no feeling it is up to the nurses to monitor this and take the necessary action as and when needed. Consideration also need to be given to the patients' bowel habits as many nurses do not seem to realise that not every patient needs to have a bowel action every day - this is individually determined.

    I hope this is not merely a further case of 'too posh to wash' as I get rather tired of all the excuses for basic nursing care that qualified generalist nurses are no longer trained for or allowed to carry out for the holistic (which seems to sound like an old-fashioned term to some) health and well-being of their patients.

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  • we are qualified nurses with our diploma to prove it, but:
    we haven't had the training
    there wasn't the training option
    we are not allowed
    we may have a complaint brought against us
    we may do damage
    we do not do dirty work
    we are qualified nurses and 'too posh to wash'
    our trust does not allow us

    any more reasons or excuses?

    we are responsible for the nursing care of this patient but only the care of the bits of the patient we are trained and competent in and which suit us
    we do not know who might be able to carry out this care and at the right time according to the patients schedule
    we give laxatives, that is sufficient
    and now the patient has loose stools
    s/he has been given too much laxative but we wouldn't think of examining to see whether the treatment was effective because of the reasons above
    we haven't questioned the rules about our non-action or lack of training
    we have never come across this problem (because perhaps WE do not happen to care for the elderly, patients with paralysis or neurological conditions, coma, stroke or in intensive care)
    there is little point in worrying about it if we do not see this 'type' of patient or with these problems
    we can just ignore the problem until another serious one crops up (even a perforation) when it is a little late to do much about it except throw up our hands and say we don't know
    = this is our attitude = we are too busy to worry about it = WE ARE NOT CONCERNED

    and so the problem goes on until there are serious consequences or somebody complains or has the courage to write about it again
    this may cause some discussion and then we return to square one until the next patient comes along and the same process will start all over again
    I do wonder why some people have chosen nursing as a career, especially those who grumble incessantly about the conditions, make life difficult for their colleagues and fail to deliver even adequate patient care and then are surprised at the complaints against them.

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  • Anonymous | 1-Apr-2011 1:22 pm:
    I was stating what my experience of this particular skill has been since training. Over the years I haven't actually looked after anyone who required DRS so I haven't needed to explore any training, which even if I had would have been out of date had I needed it at a later date anyway.
    I hope the rest of your post wasn't directed specifically at me, or the end swipe. I'm inclined to feel a rather 'unprofessional' response if it was.
    If any healthcare professional were to demonstrate such lack of caonern you describe then I would be following that up.
    I suggest maybe you and the poster after address the educational failings to the NMC and the government, as nurses themselves have v little sway with regard to moving dinosaurs such as this.

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  • above, I am not addressing you personally who ever you are. you will note that my comments are general, but I just wondered with my first question, which has so far remained unanswered, if there is somebody specialised who carries out this task for patients who need this care because I do not believe it is something that can be ignored by qualified nurses.

    for me it is such an integral part of general nursing and not an uncommon problem in the elderly and the groups of patients I mention above, or even after surgery, that i am very surprised that there are nurses on general wards who do not seem concerned about this very serious problem.

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  • what are we meant to do?
    if you're not trained to do it and everyone with grey hair keeps telling you only dr's can do it where does that leave you?

    considering how ittle practical teaching students get in the classroom; we weren't even taught how to put a sling on, let alone scoop rock hard faeces from a paraplegics rectum.

    so good lord, drop the apologies and the handwringing.
    it happened because it is widely believed to be a dr's only procedure in most if not all hospitals.

    ask the NMC to do a survey asking who has done it and who has been trained to do it. the results will be very (un)suprising.

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