Patient, service user, client or what?

Here’s the thing: What do we call those with lived experience that we invite to contribute to healthcare students learning? There are many labels but are any the right ones?  Ive always had a issue with ‘patient’ since I first learnt about Parson’s ‘sick role’ theory. This is the one that suggests that a person will act out the role of being sick as soon as they are awarded the label. I experienced this myself when I was admitted for an urgent op into a surgical assessment ward the year before last. On admission to the busy ward I was ushered into a cubicle and ‘told’ (by a VERY assertive care assistant!) that I was required to undress, put on a pair of dreadful hospital pyjamas and get into bed. Before I had a chance to say the phrase ‘patient and public involvement in healthcare’, I was a ‘patient’ with apparently full rights to be ‘helpless’ and ‘sick’ (It’s very easy to collude in this, by the way!). In the end my op was delayed so long it had to be performed the following day, so I had been a ‘helpless patient’ for no reason really, and nil by mouth to boot!  ‘Patient’ therefore seems too passive for me but many people still prefer it, including students. Recently when running a multi professional learning group with a colleague consisting of students of many different professions (Nursing, medical, pharmacy, social worker, physio, radiographer, etc), one student when asked could only think of patient as a label for the people who use health services and no other! (It was the medical student and the social worker student soon put him right!). So, is service user any better?

Service user as a term often appears most comfortable in the mental health arena, but things are more complicated than that. Many ‘service users’ don’t actually like being called by this label. According to the mental health foundation in an informative web page on terminology (http://www.mentalhealth.org.uk/help-information/mental-health-a-z/T/terminology/), service user is ‘popular with service providers’ which goes immediately against the grain with me as I prefer to use terms decided by people themselves and not the services who work with them, so lets move on.

‘Client’.  So lets move on (!)

Lets talk about a current favourite of mine and indeed the title of this blog site, ‘experts by experience’. To me this label raises up the status of people to equal that of healthcare professionals, which is how it should be.  In my view, health services have talked for too long about ‘person centred care’, putting the patient at the centre of all we do. Equal status helps us get there in a potentially profound way. After all, if a person has successfully managed a long term health condition for several decades, what right has anybody, even with several years education, to tell them how to run their life?  Healthcare professionals can offer advice, information, knowledge though that can be invaluable to the person in improving their self management skills. Rachel Perkins argued this was similar to a lawyers way of working (they put their expertise at the person’s disposal) and I agree with her quote ‘on tap not on top’.

So where does this lead us to? Well, all this talk about labels actually misses the point in my view. Clearly, the label should be chosen by the people concerned and not the professional or the academic. However, what is really important, whatever the label used (and I have missed quite a few), is that of power and responsibility in the relationship between the person trying to manage a long term health issue and the healthcare professional, acknowledging that the label itself may be a factor in this dynamic. In my view, who ultimately wields that power and how it is utilised can be a very influential factor in people empowering themselves to live a life as unaffected by their condition as is possible to achieve.