A user experience of nursing


Independent Dysability Issues Consultant, Trainer, Controversial Inclusion Activist and Social Change Agent with Cerebral Palsy, living in Coventry. Star of  I'm Spazticus (https://www.youtube.com/watch?v=QX8Dy10JzTY). Founder of Wheelies, and a member of West Midlands' Power 250


Email: simon@simonstevens.com

Web: http://www.simonstevens.com

This is how I see it...

As someone with a significant level of cerebral palsy as well as a range of less significant conditions, I have had my fair share of dealings with nurses both in hospitals and in the community over the last 25 years of my adult life. The first thing to explain is that there are good nurses and bad nurses (based on their experience and personality), and the quality of care you may receive is likely to be mostly based on the individual nurses you will meet as well as the culture of the ward or service involved. Within a seven day period in hospital, encountering around 50 nurses, any patient can receive a vast range of positive and negetive experiences from the comfort of their bed.

However, there are some general observations which can be made.

The first relates to community nurses, who as a whole appear more institutionalised in their way of working. I believe this is because they work either by themselves or in pairs, generally solely with long-term patients who are often 'institutionalised' themselves. Patients who require hospital beds or the provision of adult nappies tend not to be active and independent entrepreneurs like me.

My speech impairment is too often mistaken as a sign of learning difficulties by many nurses and the associated assumptions do not make a good start to our relationship!. Sarcasm seems to be the only method of demonstrating intelligence after a label has been made, as any annoyance or frustration is interpreted as challenging behaviour, making their cooperation more difficult. How am I suppose to respond when a nurse reviewing my continence services starts by asking for a high five? This is clearly a defence mechanism from a feeling of awkwardness.

In hospitals, in the last ten years I have seen an increasing desire by nurses to categorise patients into one of two types. The first is self-care patients, those who despite being in hospital are deemed fully able to look after themselves and more importantly, make decisions for themselves. The second, born out of increasing awareness of an ageing population, is vulnerable patients; those who are assumed to require personal care support and more importantly, assumed to be unable to comprehend their situation and therefore unable to make decisions for themselves regardless of any formal assessment  of their mental capacity, where families as carers are overly consulted as the voice of the patient.

As someone with cerebral palsy, I am more likely to be labelled as a vulnerable patient. I do need some extra assistance as I use bibs, special cups, straws and a wheelchair etc, but I am certainly not any more vulnerable than any other ‘self-care’ patient as I make my own decisions, especially as I still need to manage my own personal support staff while I am in hospital, who the nurses see as my family or ‘carers’ in a patronising sense. Legally my support staff are not permitted to help me with personal care tasks on NHS property which some nurses don’t understand as they assume my staff will support me, sometimes causing a bit of friction.

This summer I spent three weeks in hospital with a liver virus;  the most difficult part of the whole exercise was getting the nurses to consistently crush my tablets and put them in soda supplied by myself in my cups as I can not swallow tablets whole. The range of responses to these access needs was bemusing - it ranged from having to explain it like they were a five year old, to a lecture about soda, to many attempts to refuse. After three weeks, I was still having these unnecessary discussions at 3am in the morning, still trying not to end up with that label of challenging behaviour! I am fully aware it is unrealistic in the real world for every nurse to read the care plan of everyone on the ward but there should be a way to share this information so that a consistent patient experience is possible, especially since the patient should not need to be a 24/7 supervisor and trainer.

My greatest concern in modern nursing is that I see as the increased reliance on family ‘carers’ in terms of communicating to and from the patient or so we are led to believe. The whole concept of carers is a new one, especially in terms of having a ‘right’ to have a say in the care of a patient. I believe because it is often easier and quicker to communicate with carers, assuming without question they have the best interests of the patient in mind at all times, rather than their own interests, we are potentially sitting on a timebomb in terms of the legal ramifications of this ad hoc abuse of consent. Unless someone has their legal guardian or have power of attorney, no one can make decisions on behalf of a patient, even if it is about if they want a cup of tea. The next generation of older patients will not be so passive and accepting ofthis kind of behaviour. When I raised my concerns with my local hospital, they simply ignored the issue, showing they will be unprepared for the future change in expectations.

Your attitude, my experience

It is nurses that fundamentally determine the overall experience a patient receives while they are in hospital on a day to day basis. The good nurses are those willing and able to listen to their patients as individuals, accepting the idea that the system need to be flexible to the many reasonable requests they ask in a manner that is honest to what is and is not possible. Within the culture of wards, good co-production with nurses and patients when understanding and compromise is reached that assist the ward to run better, sharing the goals of both parties; if no one is tired why switch off the lights?

When nurses use rules to assert power unnecessarily, it will cause a them and us relationship that means both parties lose, especially when it becomes a game of who has the upper hand. Patients can be far from perfect and may need boundaries to be set in the same way as any other relationship, but in a manner that is fair and respectful to understanding their emotional responses to what is a often stressful and sometimes distressing situation.


These are simply my own observations and concerns in what will always be a complex issue, my contribution to the debate we need to have.

After three weeks, I was still having these unnecessary discussions at 3am in the morning, still trying not to end up with that label of challenging behaviour!