What’s in a Word? Patients, Clients, Service Users…

Part of my job is to mentor student nurses. This week I had a look at the recently-revised competency portfolio that the students have to bring on placement. This is a hefty document about the size of the Yellow Pages, which lists all the skills students have to learn with me, and which I need to sign off to say they’ve learned. It’s very detailed and long, with a dizzying array of competencies in it. I’d challenge anyone who thinks a nursing degree is an easy option to read through it and then say so. However, there was one thing that struck me about the competencies.

They didn’t make a single use of the word “patient”.

Don’t get me wrong, it isn’t that the competencies weren’t aware that nurses work with people, but they were constantly referred to as “service users” and “clients”. The word “patient” was conspicuous by its absence. Apparently nurses don’t have patients.

There seems to be a view out there in mental health that “service user” and “client” are good and “patient” is bad. I don’t buy it. I’m not saying there aren’t people who don’t like being called patients, but I’ve also come across people with mental health problems who loathe being called service users or clients. Besides, anyone who’s ever been to the dentist is technically a patient.

The wording on the student competencies is particularly ironic because I work in Wales. Recently the Welsh Assembly Goverment passed the Mental Health Measure, a very progressive piece of legislation that enshrines certain rights for people receiving a mental health service into Welsh law. It gives, for example, the right to have a care and treatment plan that’s formed collaboratively between patients and staff, and a right for people who’ve been in secondary care to self-refer back to services. It’s a very good piece of law aimed at putting the person using the service at its centre. Even so, the term used in Mental Health Measure documentation is “relevant patient” not client or service user.

I suspect there isn’t a “right” or “wrong” answer when it comes to whether one should use patient, client or service user. It all depends not only on what those words mean, but also what people take them to mean. For example, when we talk about “health” some people would take that to mean a fairly narrow, medical model of diagnosis and treatment. However, if you go by the World Health Organisation’s definition of health

Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.

….then that’s a much broader concept.

It’s also worth pointing out that the meanings of words can be changed, often due to a conscious effort by those to whom they apply. A good example of this comes from the recent #mentalpatient furore that erupted on Twitter and into the mainstream news. The Asda website was discovered to have a “mental patient” fancy dress costume (which Asda has since removed and apologised for) on its online store.

 

The response of various Twitter users was to post pictures of themselves in their own “mental patient costumes.”

As well as patient, client and service user, the term “expert by lived experience” has also been bandied about in mental health debates. I recently asked Twitter users what they thought of this particular wording, and got a high number of responses which I’ve Storified here. The answers varied wildly. Some loved it, some hated it, and quite a few people gave nuanced answers somewhere in between.

I’m not sure that I have an opinion as to which is the “right” wording to use (and as I’ve said, I’m convinced there even is a right answer). I’d hope that whatever wording is used, people are treated with dignity, respect and in a collaborative way that upholds their rights and wishes.

 

 

 

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Patient Stories – Will we learn?

Today the Patients Association published a report ‘Patient Stories’ (PDF). It focuses on thirteen different stories. These are stories directly about the experiences of patients through hospital systems and discharges. Some are told by family members when the person involved and some are told directly.  Some are anonymised and one is from a doctor who received treatment herself.

The format of ‘telling stories’ is a good one because it makes for interesting reporting. It personalises tales that we know about poorly managed hospital discharges which take place before they should because we hear the voices of those directly affected and it is easy to see the lack of humanity in some of the systems that exist in acute health care.

Sometimes what is remembered is a single comment which may have been made by a busy member of staff in an offhand manner, for example, in relation to Margaret Allen, her sister writes

‘my (other) sister called the hospital to enquire after Margaret’s health before her death. The answering nurse replied that Margaret was ‘screaming away nicely’ and held the phone out for my sister to hear her cries’.

There are some shocking details in some of the stories of miscommunication, arrogance and rudeness of staff, basic care not being given but sometimes it is these snippets of language which are telling in terms of respect and attitudes of professionals towards staff.

While it may be possible to write these off as ‘individual stories’, I think that would be an massive error because there is an enormous amount of learning and themes which can be traced – not just through these stories but through the similar ones that have emerged over many years.

There is a consistent lack of flexibility and a lack of listening in these processes.

An example would be in the story of George Robertshaw who was admitted to hospital and was discharged in a way that his GP felt was ‘unsafe’ due to it being so rapid and was discharged in thin pyjamas in the winter – so that when carers did arrive to him he was cold, hungry, very thirsty and still not well.

His daughter writes

‘Following my father’s death, I again spoke to someone to inform them of my father’s demise and that I would be making a formal complaint re procedures. She told me directly that she would ask a nursing director to phone me back in a day or two, This never happened. No call, no communication, no nothing. I again rang and I was told that they had informed whoever it would be and that they would remind them. I got the impression that the relevant person was present but did not wish to speak to me and was telling the person on the phone what to say

Again, this could be claimed to be an isolated incident but as a rule of thumb and as someone who takes quite a lot of verbal complaints about the services that I provide, I tend to assume for everyone one person who complains or whose family complains, there are far more who will not have the confidence, strength or understanding to do so. It is important that systematic errors are challenged and improved but it is also important that clarity of information and respect are given to those who use services.

I wonder if that same Nursing Director would have been so slow to respond to her own manager? No? Then treat the people who use the services, particularly if they have a complaint with at least enough respect to contact them in the same time frames – even if it’s a matter of updating them with no additional information.

An organisation which is not willing to take or deal with complaints, cannot be a ‘learning organisation’ which is willing to improve.

I don’t have time to identify the issues in all the stories but it is worth reading as a snapshot of some of the care which is being given in hospitals in this country.

Of course there are good stories, and there are fantastic staff. The very first section of the report is based on positive feedback but we cannot ever become defensive about the systems as they exist and must treat each of these experiences as areas of learning. Sometimes it isn’t always about resources, it’s about respect and it’s about listening and responding.

Yes the NHS is wonderful and many of us have personal stories of gratitude, I have many myself, but if there is anything that can be done by any one of us to make things better, we absolutely must.

The main lesson I will take from these stories is to make sure that every interaction is bounded in dignity and respect. Mistakes happen but they can be resolved by listening and learning from those who experience them.

Defensive organisations that won’t encourage criticism are dangerous organisations. These lessons are just as important in all social care organisations as it is in health care.

The saddest thing about these stories is that we have heard similar before. There have been commitments between increasing ‘compassion’ in nursing and care staff but the systems need to become more compassionate too and far more responsive and flexible.

This is a series of awful stories and experiences but they must be learning experiences so that some positive may come amid the extreme pain and grief caused.