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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)

  • rovergirl6@hotmail.com

    I am surprised that this person is being treated in this way. What happened to person centred care ,what will they do when this person becomes so impacted that he begins to vomit faeces,this is intolerable .what about making a judgement and working together to ensure that this person receives the care he needs. As by the way this is a need and not a want. Maybe he could sign a legal document to ensure that the nurse who is doing the procedure is not accountable.

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  • An excellent article which I hope will have a wide readership. I am appalled and such treatment makes me very angry as it is one of the long lists of reasons that gives the profession a bad name and leads to unnecessary and unacceptable suffering. It also makes me very sad that any patient should be left to suffer, at the hands of registered nurses, needlessly in this way which is highly detrimental and disruptive to their already complex daily living and quality of life.
    It is also the attitude of some nurses and their trainers and mangers that anger me as there seems little attempt to rectify this and many other problems.

    There seem to be considerable serious gaps in current nurse training which are unacceptable and need to be urgently addressed and policies and practices on safety sorted out in a more rational manner by those who really understand what they are doing!

    Patients need holistic care and not just bits and pieces to suit the convenience and competencies of nurses and their adherence to certain rules, policies and guidelines. work to rule maybe ok in the manufacturing industry but there is no place for it in the care of human beings and especially patients.

    Where are the NMC and why do they not enforce their code of professional conduct and intervene in policy making? There role does not seem to extend beyond collecting high fees for the register, issuing publications which are only distributed on request and disciplining a few nurses who have been reported to them, despite their claims to protect the public from bad practice. It makes no sense merely to publish a code or practice which is contradicted by the dictates of various health and safety rules and other policies and protocols.

    sorry my post is rather rushed but after reading the patient's account I scanned fairly rapidly through the expert's comments (to return in greater detail later) but I had to express my opinion asap on what is yet another report of serious treatment failure which simply should not occur.

    Throughout my 20-year career I have never met any opposition by nurses to carry out rectal examinations and manual evacuation as required and with respect for the dignity of the patient. It was considered part of our duty, skill and within our competence - no more and no less.

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  • from
    Anonymous | 26-Mar-2011 10:15 am

    re comment from
    Sandra Joyce Odell -Powell | 26-Mar-2011 9:34 am

    "...what about making a judgement and working together to ensure that this person receives the care he needs."

    Sadly this is what seems to be lacking in much of modern nursing because of the inappropriate management model applied to the NHS which has a pernicious influence on the attitudes of its employees who are obliged to obey the rules - overt and covert.

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  • I began training in 2005: but manual evacuation was not listed amongst the competencies, either as mandatory or even as optional.

    Neither during training nor since have I encountered the procedure. In the nursing home where I work, some residents are on laxatives: prescribed mostly daily, though sometimes PRN. Some are on three different laxatives.

    There is also a short list of "homely [sic] remedies" which nurses are permitted to give without prescription: e.g. paracetamol, or honey-and-lemon. Residents not on prescribed laxatives sometimes suffer constipation: yet, as no remedy is included in the list, the action taken is variable.

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  • the problem with this, above, is that severely impacted can only be evacuated manually. they are sometimes missed as the patient can have liquid stools, especially when given laxatives, but the blockage remains. if left untreated this can lead to serious complications and also seriously affects the wellbeing of the sufferer.

    I cannot imagine what schools of nursing are thinking of when nurses are no longer trained in holistic care.

    Manual evacuation for some patients and those in care is not an optional extra!

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  • editing above - sorry should read impacted faeces in the first line.

    I do hate not having an editing facility once the comment has been submitted as one does sometimes find errors or wish to add or change something they have written.

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  • I began training in 2005: but manual evacuation was not listed amongst the competencies, either as mandatory or even as optional.

    Neither during training nor since have I encountered the procedure. In the nursing home where I work, some residents are on laxatives: prescribed mostly daily, though sometimes PRN. Some are on three different laxatives.

    There is also a short list of "homely [sic] remedies" which nurses are permitted to give without prescription: e.g. paracetamol, or honey-and-lemon. Residents not on prescribed laxatives sometimes suffer constipation: yet, as no remedy is included in the list, the action taken is variable.

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  • What about the fact that it was due to reduction in DN time to support this procedure that he developed impaction in the first place causing a hospital admission!

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  • "I began training in 2005: but manual evacuation was not listed amongst the competencies, either as mandatory or even as optional."

    manual evacuation is not an optional treatment. it is part of basic nursing care if a patient is unable to perform this distressful natural function for themselves and there are many pathological reasons for this too, many to list here, but then an RN should know all these and know how to deal with them.

    there seems to be more exclusions than inclusions in basic nurse training and one wonders what 'à la carte' treatment seriously ill and dying patients are now offered.

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  • DRA wasn't in my competencies back in 98 either, we were expressly told at college that is was not appropriate for us to be doing it. That view was expressed several times to me over the years and the reasons given were always the potential for damage and hence liability. Therefore no-one was willing to train anyone else and it became a 'special skill'. It still hasn't changed as far as I'm aware.

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