Friday, 30 October 2009

Why I think I am a patient and not a consumer.

In August I was having a great time at the Greenman festival in South Wales when I slipped and fell backwards when dancing. I broke my radius (and my ulnar styloid process). The fracture needed internal fixation with k wires and I had to spend two nights in hospital.

The next day after discharge my husband and I returned briefly to the festival... well, we had to pack up the tent! In the picture above I am sitting in a near empty comedy tent in between acts. This was my first few hours back in the real world. It was a Sunday evening and I had to let my doctor colleagues know that I would not be coming in to the practice. I was figuring out how I would cope with not being able to drive for several weeks. Soon after I went on holiday to Co. Kerry and watched on as the rest of my family set off for a day hike up Ireland's highest mountain.

My wrist got more painful and my next hospital check showed that the wires were pressing on my skin. Moving my thumb became very painful and I worried that I had ruptured my extensor pollicis longis tendon (a rare complication of Colles fracture) and was glad to be reassured that I hadn't. I googled to see if I could find an explanation for the pain in academic literature, or in the blogs and forums of others who had had a fracture like mine. But I didn't find anything. One night the pain in my arm woke me from sleep and I lay for a while half-crying before I remembered that the solution was to take more painkillers.

I wondered if I should return to the clinic early but I knew that I had been told that the wires couldn't really be removed before four weeks so I just had to wait it out. Two weeks after that the cast was removed and I could start exercising to conquer the stiffness that immobilisation had produced. I am still under the care of some excellent hand therapists. Tomorrow morning we will document how successful I have been in getting back to normal.

Whilst my arm was in the cast I did not see patients. I worked in the university but I felt too much of a patient myself to act as a doctor. But what do I mean by patient? I hadn't really thought about the term too much myself until I started seeing people use it in a way that I didn't recognise.

Last week the E-patients Connections 2009 (#epatcon) conference took place. Although it used the word e-patient in the title, the strapline made clear that this was about how to "reach, engage, educate today's digital health consumers". Consumers not patients. There were patients speaking there. ePatient Dave talked about how companies wanting to connect with patients should be authentic. Kerri Sparling (from Sixuntilme- a fantastic blog about her experiences of living with diabetes) wrote "It's a strange dance, watching people who are living with different health conditions in the same room as marketing teams and pharma companies and people who might view us as "consumers.""

The day after #epatcon I lamented that the only consideration of epatients at the conference had been as a consumers, and that perhaps there was no-one to fund a conference to look at the "real experience of patients". Jonathan Richman replied "I don't get it. What's the diff between 'consumers' & 'real patients'. They're the same ppl, just a diff word."

So is the word important? I have been recommending a book by a Dutch philosopher Annemarie Mol, " The Logic of Care: Health and the Problem of Patient Choice" in the past few months. Some of it is available here on Google books if you want to look before you buy (and you can read a great post by Ken Bottles on his thoughts about this book here). She describes how the response to the medical paternalism was an undue focus on patient choice as part of a consumerist model of healthcare. She is not opposed to patient choice and neither am I when it is appropriate but it is not sensible for it to be the focus of all interactions in health. It also implies that there may be a choice when there is not. Mol's study is of patients and professionals working with diabetes and some of her points resonate with another recent post by Kerri on Sixuntilme. Kerri talks about the guilt that is inflicted on those with Type 1 diabetes when they are made to feel that any deterioration in their illness is due to bad choices that they have made, and not to the disease itself. As the prologue of Mol's book states, she concludes that "good care is not a matter of making well-argued individual choices but is something that grows out of collaborative and continuing attempts to attune knowledge and technologies to diseased bodies and complex lives". Diseased bodies and complex lives.

So if consumer is not a good word to describe the experience of someone living and dealing day to day with a disease or disability, is patient any better? Patient as an adjective is defined as "bearing or enduring pain, difficulty, provocation or annoyance with calmness. It is only perhaps the "with calmness" part which is not appropriate. I often felt not very calm as a patient for a number of reasons. But this definition captures more of the root of the word "to endure" than does the most common definition of the noun "one who receives medical care, attention or treatment". When patients go online today to tell their story they don't just talk about their experiences of healthcare. That is just one part of dealing with an illness. There is another whole world outside of the hospital, doctor's clinic and medicine cabinet that must be negotiated. And that is what epatients tell us about. It is what I wanted to learn about when I searched for the stories of others who had endured a Colles fracture like me.

Some think that other terms such as survivor are more appropriate. I feel that I endured my wrist fracture rather than survived it, and I feel the same about other experiences of patienthood which I will not share here. Epatients tell us about how to endure and survive illness, how to collaborate with the professionals who care for us, and how to actively participate. The don't tell us about how to consume.

How do you feel about being a patient? Do the words matter at all?


  1. I've been testing the waters on Twitter to ascertain the politically correct term for those I look after. In my post today I felt awkward referring to patients as 'patients'.

    Ultimately I genuinely want to respect the wishes of my 'people' but I have some concern that the argument is all the result of a vocal minority.

    Remarkable changes happening.

  2. What a great post and what could be a great debate on what language to use. I would like to add my £0.02 worth. I think we are also missing a citizen component to this debate.

    Your story is compelling, and believe that you were acting as a consumer at certain points of your story. They may not be active consumer choices but still choices. I think you are right in making a distinction around the different “states” that we find ourselves in.

    My guess is that when you realised that you had injured yourself you made an instinctive customer choice to use NHS resources. If you had been living in other parts of the world you may have been making a more active choice of whether you could indeed afford treatment (and self pay) or even looking at your insurance documents to see whether this injury (and the way it occurred) was covered. I’m interested whether at this point you considered whether to pay for private medicine? Would you agree that at this point you were a consumer of health care resources and making choices?

    Your story goes on to describe the fact that you had to rearrange work. I am assuming that this may have resulted in a drop of income and hopefully this was not too no adverse for your family finances. However, we could also say that as a CITIZEN we saw a loss of productivity and lower tax being paid into the community fund! This does have implications therefore on health provision. If your personal circumstances were different you may have needed the health system to be optimised around getting you back to work and productive as quickly as possible.

    I do like your description of being a patient and at this point being a consumer of health knowledge. Again I guess that you could have made the active choice of employing other agents to find this information. It still amazes me to hear how patients assimilate knowledge of their disease in the psychological process of making sense of their disease. I do have a hope that in future more tools emerge that can help patients use other patients stories and data to give them greater certainty about their disease – I know in some cases this may be difficult information psychologically to make sense of, but we have to realise that this data is available and patients often need comfort in the reassurance of what is likely to happen to them. As a CONSUMER what would you have been willing to pay to know what different treatment options there are and the real life outcomes of each and maybe whether there are geographical differences (globally) on the treatment of the condition. – I know I’m stretching the point in your particular condition but for other complex diseases this knowledge is likely to be increasingly available.

    I will look at your recommendation of Annemarie Mol. Certainly there are many diseases where citizens bad individual choices are often being judged by both themselves and the system. Here I’m thinking of diseases like lung cancer and smoking . I mean I hope you are feeling guilty for dancing at a concert and leading to injury! (BTW is there a read code for this?!)

    In summary. I do think there is a place for being a patient and giving permission for people to care for you. I think there is a place for being a consumer and making active choices in the way that health care is delivered. I lastly think there is a place for being a citizen and having a community responsibility to making sure that active choices are made in enabling people to recover their dis ease or live with the dis ease.

    Thank you for clarifying the different words – they do matter.

  3. Survivor is surely only appropriate where the condition is potentially fatal. I regard myself as a prostate cancer survivor.

    The thng that strikes me about ePatient's (and other American) writing is that financial activities and decisions need to be made by the injured or ill person before treatment can take place. This does create a consumerist environment. There is also a consumer choice to be made about obtaining healthcare insurance.

    This doesn't happen at the personal level in the NHS. Meta-decisions are taken by NICE about the efficacy of drug regimes. This may lead to "consumerist" actions as patients see themselves as being denied treatment but, in my view, these are cries of pain and result from an uninformed reading of information. This is a valid reaction but should not lead to a situation where he or she who shouts loudest gets different treatment.

    In my case I was relieved when I was recently told that I could come off the LHRH analogue injections. My primary reason was that there was now some chance I would regain a degree of libido and my second was that the NHS would not be forking out nearly £3000p.a on my implants. However, my GP told me that another patient was outraged; the NHS was taking away his treatment.

  4. @Bryan I saw your awkwardness on your blog and I should have linked to your post. But I guess I was mostly thinking here about what this feels like as a patient rather than as a doctor.

    I suppose I am particularly concerned about this because I think a key skill of a good doctor is being able to negotiate between the way a patient presents as a consumer of healthcare and all the other stuff that is going on in their life in regard to dealing with their illness. To me 'consumer' diminishes the experience of illness. It will be good to hear from other patients here.

    @Mike Thank you. When I first saw you mention citizen, I thought you were suggesting this as an alternative term to consumer, and my feeling was that this is not specific enough to the experience of illness. I feel a citizen when I vote, or give directions to a stranger, maybe even when I complete my tax return! It might be useful if you told me more about how you see citizen being useful here. Is it just implying that there is a public health dimension to healthcare? Well, I completely agree with that. But here I am talking about what it is like to experience illness as an individual. Does one feel like a consumer or a patient?

    By the way, I don't see being a patient as being passive. Today I discussed with the hand therapist the evidence for he silicon dressings they suggested I apply to the scars on my wrist to reduce keloid formation. When I was initially given a wrist splint to wear after my cast came off, I searched for evidence that it might impact healing in any way as I was rapidly deciding that it wasn't for me.

    And no. I never considered seeking private care. I didn't even consider going to any other NHS hospital rather than the one that was closest to me, although I have since swapped over to my local hospital for ease of follow-up. In other parts of the world there may have been many more choices to have been made but I am glad that I did not have to make them.

    So, of course I was a consumer of health care resources, but I feel that is a way of objectifying me rather than trying to understand my experience. I didn't feel like a consumer. I felt like someone who wanted to get better.

    With regards to information on treatment options, I did have a quick look at current management of Colles fracture in the UK, on an iphone. But I didn't find anything that made me ask more questions. Afterwards I looked more. I'm well aware now that in different centres (countries) I may have been volar plating rather than k wiring. There is an ongoing RCT in North America of treatment options for unstable wrist fracture. In the future I can see that even in an emergency department patients (or their advocates) may be accessing information as they wait on what the best treatment options are. By the way, I don't think that anyone should have to pay to find out this information. The challenge now and in the future is variation in health literacy and how we can insure equity of access to treatment. There may be even more evidence of the inverse care law in 5 years than now.

    But all of that will not take away from the fact that patients do not wish to be unwell. We don't seek out information on the fracture treatments in the same way we might look at reviews of food processors. Patients don't have to be passive. They can be very active and engaged in their care as I hope I was.

  5. @Keith Thanks for finding the blog. People talk about surviving various chronic conditions, mental health problems, domestic abuse. Not all ofthem are potentially fatal. I think that survivor suggests actively overcoming, triumphing. And I think if patients feel that way about their illness it is fine. One relates to illness in different ways at different times.

    You make some really interesting points about equity of access, and the risk that she who shouts loudest gets. I think that health professionals working in poorer communities do have to be advocates for their patients and try to ensure that the inverse care law is overcome as best we can.

    Thank you to all of you for your comments.

  6. Anne, great food for thought here. I use the term survivor not only because I am still surviving my illness, but because I'm surviving it IN SPITE OF non-diagnosis/treatment for 20+ years. My survival then is not only through disease, but also through the medical system.

    Around here you hear, "I don't care what you call me as long as you call me for supper." I also used to say, "I don't care what you call what is wrong with me as long as you figure it out and help me get better!" to doctors who wanted to debate the name of the illness(es) I had. (They typically were looking at symptoms, not overall picture.)

    So, what I'm saying as a patient is I don't care what you call me as long as I'm treated right. I want to participate and I want my data, for starters.

    Out of time....more later, I hope.

  7. @Robin The problems is taht I think referring to patients as consumers might reduce the chances of them being treated right.

    I am sure that there must be a body of socio-linguistic literature out there on how or why these terms do or do not matter.

    Thanks a million for your response and keep on surviving!

  8. I'm an almost constant patient - I've had two strokes, I had rhabdomyolysis as a consequence of Influenza A, 2 retinal detachments, malaria a couple of times, and on top of that I'm investigated on and off for IBD, as the rest of the family has it. On all these occasions I've been happy to be the patient, and not the doctor - although the SHOs did ask me about how much fluid I should have when I had rhabdo....Was I a patient, a consumer, a citizen or a user? I'm not really sure - I was just happy to let someone else take care of me, and take the worry away.

    The biggest problem for me was always not wanting to be too much of a burden to those I know are already overburdened. I guess my ails were reason enough to be in hospital, though. Being on the other side of the fence certainly makes interesting time.

  9. Thanks for the post, Ann.

    From my past in working in breast cancer, we found that people had an issue with using "patient" to describe their situation. We had a survey as part of a CRM program and realized after a while that very few "patients" were signing up as a percentage of all sign ups.

    "Patient" was one of the choices you could use to identify yourself. The others were things like "physician" "nurse" "caregiver." The most used choice was "other." After some more research with the "other" people, we realized that they were "patients" by our definition, but not by theirs.

    These people didn't consider themselves "patients" anymore because they'd completed their intense treatment including surgery, radiation, and chemotherapy. They were cancer free and didn't want to be considered "patients" anymore. However, we used this term because they were still taking some hormonal therapy as long-term, adjuvant treatment. The people that called themselves "other" wanted to be called things like "survivor," so we made the change.

    Immediately, people joining as "survivors" became the biggest group of registrants. They were the people who were "targets" for our program (i.e., were people we had information to offer), but we might have missed them simply because of a word choice.

    Point is, that the word choice can vary based on disease state. In the end, we need to be providing solutions that help "patients" first and then, if appropriate, "sell" second. Unfortunately, this isn't the way that it's done most times now. Definitely improving, but much more needs to be done.

  10. Hello Tom
    I'm guessing that you are a doctor. I think it would be interesting if I did a seperate post around the issues of being a doctor and being a patient.
    I hope you are feeling fit and well now.
    Anne Marie

  11. @MBNY (who is @jonmrich) Thank you for your fascinating and powerful insights. Today I have been thinking about where the concept of patient starts. Are those without illness going through screening programmes patients? Is it the enduring of screening itself that makes them a patient, if they are at all? Are those being given information on how to prevent disease, before it manifests, patients?

    I found some research today by colleagues in Cardiff on the experience of those attending a genetics counselling service. They were very clear that they were not patients, but there is no indication of what term, if any they would have liked. Perhaps one doesn't want to label a particular part of one's identity in these circumstances. It is something that you hope will be transient. (here is a link

    Your story points out that people also want to lose the signifier of patient at a certain time too.The interesting thing about your work is that people who had survived cancer were not rejecting the term because it signified medical paternalism but because it identified a kind of suffering that they felt was now in the past, if I understand you correctly. I think this is an important distinction to draw and it enforces that the concept of being a patient is not something that one chooses. That is I guess why I have so much antagonism to the use of 'consumer'. It simply feels too transactional.

    Thank you very much for taking the time to reply. 140 characters was not enough!

  12. Fascinating discussion which we have all the time in midwifery. We've chucked out the term 'patient' because pregnant women are not sick, on the whole. And in New Zealand, women choose their midwives in the same way a consumer or client chooses to buy a car.

    I would continue to use that term even if the woman became sick and had to be transfered to obsteric care. However, would be interested to hear what others think.

  13. Very interesting conversation. As I said on Twitter, I don't particularly like the term "survivor." However, if my diseases were ones which could be placed in the past, and overcome or survived, then I would likely feel much different.

    Living with chronic illness is a much different existence. I can never overcome my MS or RA. I may be able to overcome the challenges which they place in my life. I can certainly adapt to changes in abilities. But I will never be a "survivor" of MS or RA, or even depression because it is always there to be managed.

    So, the terminology can vary depending upon the circumstances. Know if you turn the tables and started to say "woman living with pregnancy" that would be ridiculous.

    I am a person living with multiple sclerosis, rheumatoid arthritis, and chronic depression who seeks to live well in spite of the challenges created by these illnesses. Those challenges affect my life financially, physically, socially, emotionally, etc., etc.

    P.S. @jonmrich There are more than just six MS-centric forums out there. We are quite an active group of patients online.

  14. I think the words matter enormously. The debate shows that there is a paradigm shift happening in the way that society has a whole relates to its health practitioners and their support structures.

    I have started a new blog to look at his and try to define the terms and the new model. I would welcome all your comments. See ePatient—the Empowered Patient

  15. Lisa, my disease and its effects are something I am still surviving, but I am not cured. Surviving, to me, means one is still alive IN SPITE OF rather than one is cured. Surviving is on-going, cured or not.

    Anne, after more thought, I agree that what one calls me does make a difference. Calling my disease what it really is versus the piecemeal naming of symptoms or the slapping on of "something" to attempt to placate me was not acceptable. Naming what I have and treating it was/is important.

  16. Robin,

    Perhaps this is an example of a difference in disease-related social dynamics. There are too many patients (and snake-oil salesmen) with MS who use statements to the effect of - "I went blind at age 20 and was in a wheelchair. Now I've CONQUERED MS!! I walk 3 miles and have a fulfilling career. Let me teach you how you too can conquer (insert struggles) and break through barriers to financial freedom. Attend my free webinar.....blah blah blah."

    It is common in MS for patients to have dramatic ups and downs (ie temporary blindness). Unfortunately there are too many individuals who use this as a gimmicky way to sell their snakeoil.

    Perhaps this is just a sensitive button for me as I get pitched ideas frequently for using my blog to promote (and share profits from) various webinar offerings which lead to patients signing-up for coaching or buying lots of supplements.

    Also, I completely agree with you that surviving in spite of our illnesses is an on-going process. I will gladly say that I'm surviving the effects of my diseases, but I do not claim to be a survivor, a term which makes me think of "breast cancer survivor." Unlike cancer cells which can be present in the body and later eliminated, MS can never be eliminated.

    Mostly, it's semantics.

  17. Dear All
    Thank you very much for your contributions. If anybody has links to this subject being discussed on blogs before I would be really grateful for the links.

    The discussion around survival is interesting. Does survival mean 'living with', or 'living despite', or 'living after'?

    This is about semantics but the words we use matter, and they tell us a lot. Sometimes we think that an other knows when they use a word when we don't.

    Keith has started his own blog because he feels that you can't separate the words out from the wider changes in society. I'll look forward to learning more there.

    I wanted to write this blog entry because I thought that while 'patient' may have been seen as an intrinsically passive word in the past, that had to be substituted with another term, such as client, the tide was turning.

    Patients who describe themselves as epatients, or empowered patients, are possibly reclaiming the word and making it stronger. It is no longer just about being a passive recipient.

  18. This is a rich discussion indeed. It is interesting to read the discussion around the notion of survivor. Survivor in relation to cancer has been variously defined by different groups and authors and ranges from the point of diagnosis through to being a term only used after remission has been attained. Participants in my study talk about how they are "living with (myeloma)". Georges Canguilhem lays out an elegant genealogy of how notions of health and disease have shifted throughout history and how they relation and change is related to institutional power.He presents a thought provoking discussion and demonstrates how our ideas about what is normal physiology and what is pathological (disease if you will) are concepts of value which are "deeply imbued by political, economic and technological imperatives". We have examples of this in recent times - the medicalisation of menopause and lifestyle choices (obesity, alcohol, tobacco, sexual behaviour for example). Christopher Boorse has also prompted us to ask questions about what we mean by notions of illness, disease and health. The participants in my study, did not describe themselves as ill. They are living with myeloma in, albeit, a different definition of health. They have a (pathological disease) but they have a new 'health'- one which accommodates the restrictions etc imposed by their treatment and disease - well mainly effects of treatment!
    So- where am I rambling? If disease,illness and health lie on a spectrum from the normal to the pathological, then the notion of patient, client, consumer, survivor, person living with - myeloma,paraplegia, deafness, colour blindness, pregnancy - must also be identifying themselves across a spectrum.

  19. Anne, this is a fascinating topic and one I have considered for some time. It is indeed important as others of you have mentioned. Language frames our understanding of the world and a re-definition can completely change our relationship with things like our health or education.

    First of all let me state my position. I lead the healthcare team at FreshMinds Research, a consultancy firm that uses research techniques to understand people that use public services. I approach this particular group of well informed patients and doctors with trepidation as a member of the marketing industry!

    I have seen terminology move in a few different sectors:

    In education, we moved from pupils or students to learners. This term seemed to sum up the people encaptured in the government's expanded learning and skills agenda without condescending to them.

    In mental health, where the subject of what to call people that use mental health services is a particularly sensitive one, we use the term 'service users'. I have seen this term in healthcare more widely too.

    But the term that we have started to use with NHS Trusts is 'customers'. Why? Mainly because it represents a philosophical shift away from the needs of NHS staff to control the people that come through the organisation, and into the territory where the customer is the one in control of their care. Government policy has been moving to this position for the last 5-10 years and now we're beginning to see the impact of that policy.

    What we see in our travels is that in many NHS Trusts the initial argument is one similar to that which you have in the comments on this page - is it more important to carry out the treatment well, or to treat the patient as a customer and understand their lives above and beyond the moments with which they interact with the health service? We believe that the answer is both.

    Other service industries spend a great deal of time in establishing who they are serving, what they want, how they can give them the best possible experience. If you don't think that this applies to healthcare, read Management Lessons from Mayo Clinic by Barry Seltman. And that doesn't just apply because it is an American organisation, it applies because the organisation is built around the mission to put the patient first in everything that it does.

    As various of you mention here, the relationship of the empowered patient or healthcare customer in a long-term illness or community system can be rather different. But the point still stands, it's just that in these situations the role of NHS staff is to empower their customers and help them navigate what is a potentially daunting new level of choice over their care.

    I hope that makes some sort of sense!

    Jake Griffiths
    Head of Healthcare Research
    FreshMinds Research

  20. Thanks Anne for your reply. You're right I did make these comments in a public health context. The citizen or community part to me means that there is choice for a community in what type of health services to offer to 1) prevent disease 2) treat effectively and 3) provide aftercare. This then enables people to engage in their lives and be active productive members of their communities. Also I think in these times of economic recession it is important to maintain a healthy workforce. I realise that this is quite a problem in South Wales and looked up their economic development report only to be shocked at the low level of GDP being produced by Cardiff and Newport Page 4 Surely this is good reason to make sure that investment is made in health? I think I maybe labouring the point but for me this is about citizens being active in designing the optimal health system that enables people to be active and productive.

    BTW I've done a summary of what I think the various names of the stages of the disease are. I hope the slide is pretty self explanatory and clearly it is trying to simplify many different diseases and processes. I'm happy for people to change the document.

    Thanks once again for a fascinating debate.

  21. Thanks for inviting me to your blog.

    I am a clinical psychologist and we were taught not to call our clients "patients". We were instructed to refer to them as clients.

    Reading your blog post, and thinking about my experiences as a person with a rare genetic disorder, who fought for 19 years to get a diagnosis, and who continually has to fight doctors for help. I do think the words used in the medical profession have an impact on the client's care.

    the medical profession refers to me as a patient. the term patient says to me that I am a passive being in the medical interaction, one whom seems to merely be a vessel carrying a disease which I endure. a disease which was like a difficult jigsaw puzzle and all but one doctor looked at the pieces, deemed it too hard, and didnt bother to try. as a patient, I feel powerless. I have had many experiences where doctors appear to need to be the expert. They need to have the answers. With my disease, noone has the answers. Noone has even heard of it. It is not often that a doctor has been big enough to let go of their power and admit to me that they do not know, and to hand me the power and admit that I, having lived with the disease, and keeping abreast of research, am the expert in the room.

    I really believe we should be seen more as clients. Clients who are enduring some sort of hardship, but recognising that we may be informed on the issue. As a client, we deserve to be fully informed. we deserve to be treated with respect and given power in our choices, as opposed to being a patient to whom many doctors dictate.

    I have had many terrible experiences, the most recent was yesterday and it left me traumatised. They way the doctor treated me was appalling and the things he said extremely harmful. I could not help but wonder that if he had viewed me as a client and not a patient, that he may be more concerned about providing a quality service and keeping his customer happy, that by maintaining his power by putting me down and dismissing my experience and knowledge.

    however, perhaps the use of the term "client" wouldnt have worked with this doctor as it was at a walk in clinic. doctors surgeries in my city are fully booked and cant take new patients on. we have a severe doctor shortage so they are in no need to have happy customers.

    As someone who often suffers because of the culture in the medical system I really appreciate what you are doing.

    thank you

  22. ps - having said all that, perhaps the culture can be changed and the words need not be. I dont mind being called a patient. but when a doctor treats me like i am JUST a patient and he is the DR (god) that is when I have a problem. Being a patient doesnt make me uninformed and unable to know when a doctor is mistreating me or abusing his power. He is a doctor, I am a patient, but we are still equals. He hasnt even heard of my disease, I have lived with it all my life. They MUST acknowledge that my input will help them to treat me!

  23. i think you ought to stop the backflips Anne-Marie, you're not a student anymore!

  24. Hi Anne Marie,

    I met you in the #CCK09 session tonight. I think this blog post reveals transparency and professionalism in equal measure. Well done. I also think that at times, it is only when you put yourself in the position of those you usually serve, that you begin to have empathy for them.

    I am a teacher who is on education leave this year. Now I being a student--generally the exact person I serve in my regular profession. Two days ago I received a mark on an assignment for one of my online classes. I was upset with my mark and with the professor's comments. I felt that I was being evaluated using criteria that had never been clearly stated in the assignment description. Then I took a step back. I realized that this must be how my students feel when I have not given them clear guidelines about assignment requirements and yet mark them down because they don't meet those unspoken requirements.

    Back to your blog post. I think the distinction between consumers and patients is an important one. Consumers implies that I want to understand you so that I can profit from you. Ulterior motives. However in dealing with patients, nurses and doctors want to know and understand because the patient is a human being who is part of the same world as you.

    Thanks for your blog post.

  25. Hi Anne Marie!

    Thanks for the great post! I was very sorry to read about your injury. It sounds like a drag. Waking in the night because of pain doesn't sound like fun. I hope your healing is progressing well.

    I tend to agree with the previous posters who liked the word 'client' best - it seems the most neutral choice to me.

  26. Wow what a great discussion! As I mentioned on Twitter the people served by the regional rehab centre where I work (I'm an occupational therapist) have decided they would prefer to remain "patients". I think the challenge will always be that there are so many factors that impact on a persons perception of the their relative role in a healthcare relationship. This whole debate is so closely linked in my mind to the tensions between medical and social models, and the difference between acute and long term condition, illness and disability. In an acute or emergency situation I would certainly see myself as a patient - where the intervention is clearly medical/surgical. I think that might change where the focus shifts more to a condition management, rehabilitative approach, or where there is a greater period to plan or reflect on intervention options.

    There is also some critique to be had of the term "survivor" - some have challenges the helpfulness of perceiving a struggle or battle with illness. It could be said that a long term condition, and its impact on quality of life should attempt to be synthesized into the identity of that person, rather than seen to be at odds. Jennifer Creek has written some interesting articles on this in OT literature.

    Ultimately the label or category most identified with with be so personal.

  27. I tend to agree with those who see patient as implying passivity. It's definitely analagous in my eyes to the pupil of old - thanks Jake for this link.

    In massage therapy along with many other professions we tend to use the word client which is somewhat similar to consumer but with less of the monetary implication that Ruth alludes to - "consumer implies that I want to understand you so that I can profit from you."

    I definitely prefer this term to patient because it seems to suggest more of a two-way relationship in line with the move to allowing the health consumer to be more actively involved in the choices relating to their health.

    In some ways I think though, that some physicians have moved too far down the track of leaving the decisions in the client's lap. I've had several experiences lately of visiting medical professionals, being informed (as much as I could be within a 10 minutes appointment), then being asked to make the decision. Both times I've thought that I'm sure that the doctor would probably make a much better, and more informed decision than I was able to make. There's a balance point somewhere.

  28. Perhaps the thing we are missing here is the differentiation between the person and the role they are playing at the time. I am always me but sometimes I'm me the blogger (now) and sometimes the patient (lying unconscious in A&E), sometimes the cancer survivor (actually always but particularly when I choose to talk about it),sometimes the empowered patient (in discussion with my GP about going on to statins) and so on. I think of myself as my chiropractor's client as I pay her for her services, my pharmacist's customer as the link is less personal.

    So all of the terms mentioned in here have some validity and I would be happy to use consumer if I forgot my principles and went for private health insurance.

  29. Prompted by a comment from Keith Underdown on my The #hospitweet Blog, I wrote a very short and simple post - The impatient patient - which you might be interested in.

  30. Your posting has given me cause to reflect, I hate being a 'patient'. I am awkward and argumentative. When I had my 1st child 15yrs ago (long story) postnatally the following day I was confronted by a new midwife who I had never worked with and I said I want to go home she replied are you telling me or asking me? I said definately telling you don't give me crap! I then fell apart postnatally at home, typical of unsupportive abusive 1st husband. I then broke my leg falling downstairs when my son was 9months old. I again was a 'bad' patient crying in pain left overnight because of no theatre time to pin and plate my leg. Ever since then I have spent the shortest time possible in hospital, p/n with Jasmine she suffered jaundice within 24hrs of birth I am rh neg. they wanted me to stay (they being the nurse neonatal practitioners) I was distraught at staying in. Hubby cam to the rescue as he was GP with special interest in paediatrics. With Jemima I stayed less than 4hrs p/n.

    In a nutshell I hate hospitals unless I feel I am the one in 'control' and in uniform! It is testament to how out of control the patient process can feel.

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  32. As a patient, I am comfortable with that word. Using that word has no connotations for me. If I am unhappy with my treatment I say so and discuss it with my GP or hospital specialist.

    I am suspicious when people want to change the word. Changing a word that has been used for years usually implies an agenda of some sort.

    I am not particularly bothered that the word is listed in the dictionary as having another meaning as an adjective (bearing hardship without complaint). There is not necessarily any link between the two. You do not have to *be* patient to be *a* patient.

    I am the patient, please call me that. It is the word I choose.


I am reintroducing word verification to cut back on spam posts. I'm sorry if you find it frustrating,