Won’t get well: Trying to understand medical non-compliance

How many unfinished prescriptions are left in your medicine box?

How many unfinished prescriptions are left in your medicine box?

This post was born out of discussions with my doctor friends, who frequently struggle with “revolving door” patients. The kind of people you discharge knowing you’ll be seeing them in a few weeks, maybe even a few days. Individuals who  grudgingly accept treatment, as though intent on remaining sick. Those who fail to follow medical advice, despite the pain and risks they then live with. Questions arise as to whether we should treat these patients at all, whether the resources are justified when they seem determined not to look after their own health.

“Non-compliance” has a very punitive ring to it. We comply with authorities, with court orders and sanctions. It suggests the existence of an external control and an absence of choice. The somewhat softer “non-adherence” is perhaps something all of us can relate to. Which amongst us have not been entirely adherent to medical advice? Perhaps we failed to complete a course of medicine, drank whilst on antibiotics or missed a few doses. This kind of non-compliance is one of the highest rated frustrations for doctors, but is very common.

Who is more likely to be non-compliant?

In a review of 102 papers, Jin, Sklar, Oh and Li (2008) found that those who do not comply are more likely to be male, younger, single, to have a lower level of education. Those who have a cognitive impairment (e.g. dementia), a mood disorder or use substances were also found to be more likely to be non-compliant. The complexity of treatment regime, level of medical knowledge, quality of relationship with the prescriber, and stigma attached with the treatment were also highlighted. However, it may not always be as clear “why” an individual is non-compliant, and attention needs to be given to the paradoxical nature of the behaviour.

Beliefs impacting on compliance

Research suggests that cognitive factors may lie behind this “everyday” non-compliance: faulty and inaccurate beliefs that guide behaviour. Patients may believe that the treatment will be ineffective or there will be minimal consequences to non-adherence. They may believe that they are not “truly” ill or that the treatment will impact them negatively. They may believe that the disease is uncontrollable or have religious beliefs regarding illness, or that an alternative method that will help them more.

Readiness to change

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Thinking of the “stages of change” model, many patients may still be at the ‘pre-contemplation’ stage in relation to changing their behaviour. They will need support, education and counselling to progress to a point where they feel capable of change. When medical emergency forces a patient to receive medical treatment, they may still not be ready to engage in change, despite professionals escalating the situation on their behalf.

A good relationship with a professional will be needed to open up a dialogue in which it may become apparent that patients hold these beliefs. In many cases education may be enough to shift the belief, but this will need to be provided in a respectful manner so it can be well received. Motivational interviewing techniques have been used successfully to help a patient to identify discrepancies between their behaviour and their goals.

But what of people with more “severe” forms of non-compliance? Those who seem to actively avoid treatment and seem to exacerbate their condition?

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Trans Visiblity: Rallying, allying and minding your own business

NB – I am open to suggestions and making edits to this piece if anyone feels the language used is inappropriate or inaccurate. Please drop me a message and let me know556cd6644ae56e586e4588d8_caitlyn-jenner-bruce-jenner-july-2015-vf

Here is an extract from a recent conversation I had:

“But the first Matrix is definitely the best Wachowski Brothers’ film”

“They’re actually not called the Wachowski Brothers anymore, as one of them has since transitioned”

“Ah okay, didn’t know that! Good pub quiz knowledge!”

And then the conversation moved on. Transgender people are arguably more visible now than ever before, and words and phrases such as “transition”, “non-binary”, “female-to-male” and “gender identity” are far more commonplace in general vocabulary and seem to not need the level of explanation that they once did. That isn’t to say that it’s fully entrenched in common knowledge, and many people still don’t know the difference between terms such as “transgender”, “transvestite” and “hermaphrodite” (and think “cis” is some kind of infection), (the BBC published a helpful glossary this week). Awareness is rising, and that’s never been more true than this week, with Caitlyn Jenner’s Vanity Fair cover, quickly becoming the most visible trans person in the world.

Transvisibility has certainly increased in the last couple of years. Openly trans actress and activist Laverne Cox rose to prominence in Orange is the New Black, later gracing the cover of Time magazine and posing nude for Allure. Trans models such as Lea T and Andeja Pejic have been very visible in fashion and beauty campaigns. Popular television shows such as Transparent and Louis Theroux’s “Transgender Kids” have been educational to audiences. Journalist and presenter Paris Lees, once voted top of the “pink list” of influential UK LGBT people, has brought a lot of attention to trans issues. Trans men continue to be less visible, although statistics suggest that they are similar in number.

Prior to this week I was only vaguely aware of Ms Jenner (I’ve never watched her reality shows) but lately my social media has been awash with images of her, celebrating her bravery, openness and the inspiration she gives. But you only need to read the comments posted on this article (or indeed from some celebrities) to see how far we have to go in terms to increasing awareness, acceptance and equality for the transgender and minority gender identity community.

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Trans people experience significant discrimination and abuse. Many trans people, particularly women of colour, are murdered each year. They are rejected by their families, bullyied and the list of those who turn to suicide increases. The stories of Leelah Alcorn and Lucy Meadows are two recent tragic examples that have been publicised. Trans rights were largely ignored in the equal marriage debates, and the issue of “spousal veto” remains – in which a married person applying for a gender recognition certificate must have the approval of their spouse. The UK’s most prominent gay rights charity Stonewall has only recently begun to represent trans people, after lengthy lobbying. Transphobia is pervasive and often slips under the radar, as though seem as a fair topic for fun rather than an undercurrent of prejudice that impacts on the lives of trans people continually. Trans people are often the subject of jokes in the media and derogatory terms such as “tr*nny” are used without thought. If you look out for it you might be surprised the level of offensive language commonly used that refers negatively to trans communities, often slipping in subtly. Trans people are overrepresented in mental health populations, and with a lifetime of discrimination and high incidences of trauma it’s little wonder why. In order to access gender identity services people must jump through considerable hoops that include extensive psychiatric evaluation. The past hashtag #transdocfail exhibited just how uninformed health professionals are about trans issues. Any one of these instances is shocking, but together it’s a pretty horrifying picture of how we treat human beings we see as “different”.

TDFSamples

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Wounded healer or undercover crazy? Coming out (quietly)

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Back in 2013 I wrote a piece on this blog about navigating professional and personal identities online, particularly in relation to being a healthcare professional. Reading it now, so much of it still feels as relevant to me as it did then. Since I qualified last year I decided that I’d “open” up my twitter and writing and link it with my “real” name. My main rationale for doing this was that I’d taken a job outside of the NHS in a new geographical area. Without the structure of university and attending NHS professionals meetings I felt quite cut off from the rest of the psychology and healthcare world. I wondered if in continuing to stay “pseudo-anonymous” limited opportunities to connect with other professionals and also possibilities for doing more writing and public engagement.

My main hesitation about being “out” and open is that I’ve written in detail about my own life experiences, which include experiences of using mental health services. I have concerns about how my own disclosures might be judged by future employers, colleagues and therapy clients, and the impact of this. It’s hard to work out whether this is a realistic concern or my own internalised stigma. I don’t feel that my experiences limit my ability to do my job well (though I worry that others may think this). I feel well enough to do my job and I have a clear plan for what I would do if this were to change.

Going back through my blog I’ve taken out only a few pieces. These were the stories that contained information about other people in my life that would be made more identifiable. Whilst I’ve chosen to be more open, I respect others’ privacy and it isn’t for me to share their story for them without their consent.

When I first started my blog I was particularly looking for a space to marry up my experiences as a service-user and as a professional. It’s been a useful reflective space and I’ve really valued the conversations with others through this, particularly other professionals who write about their lived experience (PsychConfessions , CBTwithAlieshia, Giant Fossilized Armadillo and pd2oT) and mental health activists who write in candid detail to raise awareness (e.g. BipolarBlogger and Ilona Burton). Just before I qualified I took part in a research study about psychologists drawing on their lived experiences of distress (I hope this will be published and I’ll get a good quote in!). It was a powerful experience taking part, it really brought together all of my experiences as I was transitioning from trainee to qualified clinical psychologist. I also applied for a post where one of the “desired criteria” was experience of using mental health services. This sent a very strong message that my experience was valued, but I still felt my heart beating heavily in my chest as I typed a vague line in my application about drawing on my experience to consider client expectations and barriers to engagement! It wasn’t raised in the interview, but I felt glad I had taken up the opportunity.

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Electronic Selves – Professional and Personal Identity Online

Peter Steiner’s famous New Yorker cartoon

I blog and use twitter in a pseudo-anonymous fashion. By that I mean that I don’t put my full name on either account. I haven’t gone to great lengths to conceal my identity, but I do feel an advantage to not being too identifiable on the internet. Recently the GMC stated that doctors on twitter should use their real names, which sparked some debate about the kind of candid and honest communication that this might shut down. It’s said that nothing on the internet is truly private and I do have anxieties that my personal life and writing might somehow impact negatively on my career and clinical work. On the same hand, I wonder what opportunities I cut off by maintaining an alias. I’ve been having a chat about this with some friends who also blog about personal experiences, both as professionals and service-users.

Self as a writer. I love writing. Perhaps there’s something somewhat exhibitionist about writing about my life on the internet for strangers to read, but my writing style has always drawn on my own experiences, often mixed in with more factual information. I do enjoy sharing my own stories, it’s the only thing I can really claim any expertise in and makes my writing something unique and my own. My writing serves as a space for my own reflection, but I also hope to inform other people and draw attention to topics that I feel are important and lend my voice to debate. So for me writing is personal, but also a form of communication, providing a resource to others and a form of activism. It’s also something I enjoy and an outlet from my day-job, which can be quite stressful! Many online writers, especially those who write candidly about more controversial topics (think Belle du Jour) use an alias, it can be less restrictive and give the freedom to write without worries about how it might impact the rest of your life. Blogger LandslideGirl is a psychology student who also has experience of mental health problems.She mentioned the freedom that comes from writing anonymously, which I definitely agree with, “My twitter account is something I use in both a personal and academic sense.  On twitter I identify myself as both a psychology student and a person with mental health issues, although again I don’t have my real name on it.  There are several people from ‘real life’ who follow me, but it allows me a greater degree of freedom than facebook which is so closely linked to my identity.  I find that on twitter I can have the best of both worlds. “ 

Sharing personal experiences – self as patient (and as regular human being) – I write about my general life but something I’ve used a lot is my experiences with mental health problems and using mental health services. Reflecting on these times helps me to understand and learn from them, but I also think I can have a role in helping other people to understand what it can be like to have a mental health problem and be in treatment, for other people who might identify with me and conveying messages about hope, recovery and growth. I also have the benefit that I’m also a mental health professional, so in some ways I can talk both ‘languages’ and I can talk about my experiences in a way that’s accessible to the people who might work with someone like me. I guess I’d hope to foster understanding on both sides.

LSG uses her blog in a similar manner, I wanted my landslidegirl blog to be somewhere that I could write about the things that effect me, and tell my backstory, from a more reasoned perspective, rather than a daily update… I haven’t linked my blog to my personal identity, although if someone read it who already knew me they would work out that it was me without too much difficulty.” There can be something quite therapeutic about sharing experiences in such an open forum, but we’re both aware of the possible consequences of this.

Rufus May – Out and Proud

There are some mental health professionals who have spoken openly about their own experiences of mental health problems, Rufus May and Marsha Linehan are two good examples of this. They’ve been praised for their honesty, but it is noticeable that both ‘came out’ at a point when they were quite established and respected in their careers. I don’t have that luxury, I’m still getting on the ladder and I don’t know how people who might employ and work with me might respond to my disclosures. Similarly, I’m encouraged not to reveal a lot of personal informations to the clients I see in practice. It depends on the model of therapy you work with, but generally self-disclosure is considered to often be unhelpful to the therapeutic relationship and process. I don’t know how other professionals who have a lot of personal information about them in the public domain manage this, but I am wary that knowing details about my experiences might be detrimental to my clinical work. I have tight privacy settings on my Facebook to limit colleagues and clients seeing pictures of me falling over drunk in fancy-dress (not that I do that, obviously…).

Lyssa is a family and marriage therapist who blogs. Her blog is a personal one (often very personal, she recently shared her engagement photos and her erm… reflections on her bowel movements). However, she does mention her job, although not in the same detail that I do. mentioned this also, “In terms of personal disclosure with clients, I like to think that I am comfortable being fairly open with my clients when they ask me directly about my life.  I like Yalom’s take on being honest and open with clients…..because change is all about the therapeutic relationship, and I think being genuine can only help that (as long as the main focus stays on the client, of course). I suppose if a client found my blog and then brought it up in session, I might be embarrassed, depending on what the client thinks about it all.  At the end of the day, it’s just me, and my clients can take that or leave it.”

Talking about work – self as professional. Another side of my writing is often writing about issues and ideas that come to me from my clinical work, things that strike me as interesting, things that make me laugh and sometimes things that make me really sad. I’ll sometimes use examples from the people I see in my work. I am mindful of confidentiality and I don’t use names or identifying details, but I sometimes mention the type of problems I’m working with or things people have said to me. Given I don’t have my name or where I work linked to any of my accounts, I don’t think it’s possible to actually identify individuals. A lot of the people who follow me on twitter and some of my readers seem quite interested in what my day-to-day life as a mental health professional involves and I hope to give a sense of that. I’ve read quite a few other anonymous twitters and blogs that similarly offer snapshots of a professional’s life. If I was identifiable online, I’d need to really edit my online content to remove these references. Similarly references to colleagues. Sometimes I write about controversial and contentious topics, and I often take a critical view on current mental healthcare. If I was more identifiable online I wonder if there would be any issues with expressing views online that might not be in line with the views of the organisations I am involves in (such as the NHS, my university). At the same time, whilst my writing isn’t identifiable, it limits my ability to share it within my professional and academic network. LSG also mentioned fearing negative outcomes that come from writing candidly (and sometimes negatively) about the systems we work within, “During the placement year of my degree I worked in a clinical psychology service and I faced considerable stigma created by the clinical team.  This was something that I felt strongly agrieved about and wanted to write about, but I decided not to, on the off chance that somehow it got back to them.  So yes I am careful about what I write.  I’m more conscious than ever of keeping my comments quite general and not naming names.” 

Lyssa does mention her job, although not in the same detail that I do. I asked her about how she manages this professional/personal identity boundary, “My colleagues don’t know that I blog. I try to keep my personal and professional lives separate as much as possible….while still blogging about personal stuff. For instance, I post really personal stuff on Facebook but, as a rule, I do not have Facebook friends who are current coworkers of mine. And yes, I do use pictures of myself on my blog, but I try not to describe exactly where I live and I don’t use my full name, in hopes that my blog will be less searchable by people who may know me in the real world (like clients).

Real-life’ self – academic discourse. In my work life, I’ve published a paper and hope to put more out, in terms of research papers and other professional comment. This work has my full name on, the same one I use at work, so if colleagues and clients were to google me, this is what they might come up with (and hopefully not pictures of me drunk on my birthday). Although what they’d find would be very little in comparison to the amount I’ve written on my blog, and online conversations I’ve had with service-users, activists and professionals (both anonymous and those that identify themselves online) and other campaigning. But my ‘real-life’ identity probably packs more clout, I can communicate through a wide professional network and have the associated prestige and respectability of the organisations I’m a part of. My opinion perhaps carries more weight than that of an anonymous blogger and maybe I’m able to have more impact in this role. But this identity remains unconnected with articles I’ve written about sex and pornography, more frivolous pieces on lingerie and fashion and twitter rants.

So in addition to the roles I juggle at work, I carry about these different ‘selves’ with me. They start to blur into each other as I have real-life friends who read my blog and follow me on twitter, I have fellow trainees (who straddle a blurry area between colleague and friend) on my Facebook where I sometimes post my writing, not to mention photos. On my twitter I communicate with a range of professionals who I really respect, but if we came into contact in a professional environment, would I let them know who I am? Recently some staff from my university have followed me on twitter, and I’m pretty sure for people who already know me, I’m pretty identifiable online.

I doubt the NHS has the funds to do a Lisbeth Salander-style online check on me, and airing a few controversial opinions and having a good time is not exactly illegal. I don’t think I break confidentiality in my writing, but am aware that others might see it differently so am mindful of it. Even if my clients aren’t identifiable, it perhaps communicates something about my profession and how we share information if I’m seen to be writing about people I work with. I’m undecided about whether I want to come ‘out’ as a wounded healer and professional with lived experience of mental health problems, and I think it’s something I’ll probably leave to consider later in my career when I’m in a more stable position job-wise.  And if clients found me online? That would be a difficult issue, but I don’t think impossible to manage. I’d like to be an empty vessel to take on their projections and unconscious phantasies, but at the same time, I am a real person and it’d be unrealistic to act as though I have no life beyond the clinic walls. Like Lyssa says, I’d probably be embarrassed, but this is me, and my writing and my past experiences are part of who I am.

Thanks to Lyssa and LandslideGirl for their help! Go check them out, they’re great. I’d welcome any other opinions and views from others who struggle with this personal/professional interface and the dilemmas the internet and disclosure bring up.

Exploring Borderline Personality Disorder in Photography

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Borderline Personality Disorder (BPD) is a controversial diagnosis. While some doubt the validity of the label (see Susanna Kasen’s ‘Girl, Interrupted’), it’s a psychiatric diagnosis that is not well-known by the general public and often viewed negatively by professionals. The condition is often characterised by a pervasive problems in relationships, difficulties regulating mood and an unstable and often fragmented sense of self, which may seriously impact on an individual’s functioning and quality of life. Individuals diagnosed with the condition may engage in a range of impulsive and often dangerous behaviours, such as self-harm, heavy drinking, drug-use and aggressive behaviour towards other that may bring them to the attention of services. They may go to frantic efforts to deal with difficult emotions and feelings of loneliness and abandonment, and this can leave them characterised as manipulative and attention-seeking by professionals and those around them.

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Personally I’m sceptical of the concept of a ‘disordered personality’ as a whole, but this is a cluster of symptoms (although there is a very wide range of different things than can come under the umbrella of BPD) and pattern on relating to the self and others that is often seen in mental health services. Many of these individuals have had difficult, chaotic and often traumatic experiences as they were growing up and throughout their lives, and with this in mind, the way in which they behave can make a lot of sense.

I was drawn to Daniel Regan’s ‘Type B’ Project, which I think may get people to think about the experiences and classification of those who get given the BPD label. In this series of photos Daniel expresses some of the difference characteristics associated with the disorder. Often the behaviour of someone with BPD baffles and frustrates the people around them, and I think these images might offer a different way to think about and understand the person’s perspective. The images seem to bring feelings of aloneness, being overwhelmed and bombarded, disconnected. Emptiness and extremity. Using the same model throughout, I think Daniel captures something of the fluctuating moods and volatile sense of being that might be a part of the life of someone with this disorder.

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See the whole project on Daniel’s website here.

Stop-Motion: Tim Andrews’ ‘Over The Hill’ Photo Project

Rosie Hardy

I’m often drawn to art that draws on ideas about the brain, mind and mental health, and the combination of these. Tim Andrews’ ‘Over The Hill’ project is one that I’ve followed for some time and I feel it speaks a lot about identity and illness, as well as creativity and pushing the boundaries of portrait photography. Tim was diagnosed with Parkinsons in 2005, when he was 54. A couple of years later, he answered an advert in Time Out from a professional photographer looking for people to pose for nude pictures. The experience was enlightening and prompted him to respond to other adverts, and he took to Gumtree to find other photographers to capture him. Now his project includes a couple of hundred different photographers, from students and amateur hobbyists to well-known professionals such as Rankin, who have all photographed Tim in their unique way. The pictures range from candid portraits to monochrome nudes, vibrantly styled pictures and more surreal and bizarre imagery. I was already familiar with some of the photographers Tim has worked with and I like seeing how they incorporated him into their signature-style.  As a photographer myself, the images offer me inspiration for the myriad of different things one could create with a model (as well as thinking about getting in front of the lens!).

Miss Aneila

On his blog Tim documents his experiences with each of the photographers. What comes across is his real passion for art and how much he enjoys getting to know the different artists and being a part of their work. It’s fascinating seeing the many different ways that they have represented him, sometimes in a very intimate manner, sometimes more fantastical. One of the most noticeable features of Parkinson’s is the motor tremor that individuals develop. Given this, it’s interesting how the images often give such a picture of stillness and of peace. They’re static representations, frozen micro-second captures of someone who’s life must be rippled with hard to control motion. Parkinson’s is unfortunately a neuro-degenerative condition for which there is no cure, and given the subject matter you could imagine that the project could be quite depressing, charting the body’s decline. However, as Tim takes encounters a wider range of photographers, travels to further locations and creates ever more striking images, he tells a story of someone pushing to get the most out of life.

Justyna Neyring

Rekha Garton

Interview with Tim in the Times here

Knowing you, perhaps

Rules of Attraction: “What does that mean know me, know me, nobody ever knows anybody else, ever! You will never know me. ”

Rules of Attraction – “What does that mean know me, know me, nobody ever knows anybody else, ever! You will never know me. ”

The woman in front of me frowns, frustrated. “It makes me really angry, I feel like they’re not listening to me, they just don’t understand how things are for me.” We talk about the different ways she can make herself heard, express her perspective in a way that others could be receptive to. Finding a common language to share her experience, that others can translate.

But I wonder if what we’re chasing after is actually something of a myth. This idea that if we found the right words, the right time, and said it in just the other way, others would get it. They’d be able to step into our shoes, inside our skin and really see the world as we see it. The truth is that another person can’t ever truly know what it is to be you. We don’t even know if we’re all staring at the same colour ‘blue’. The same words spoken will be heard and interpreted very different by different people, depending on their own experience and stored knowledge, or how they happen to be feeling at that moment. No matter how clearly you put it, you can’t be sure of what others will take away. And someone can spend a lot of time with you, learn all your history, your interests, your little quirks and mannerisms. And then they will know an awful lot about you, but they won’t know what it’s really like, your own private, subjective experience, what it is to be you.

Like Nagel says, despite everything we know about mammal anatomy, physiology and infra-red, we don’t really know what it’s like to be a bat.

But we want to be understood. We want to be known. The imagined intimacy that comes from someone really knowing you so entirely. Total understanding. But there will always be a limit to this (or at least until we find a way of plugging in to each other’s brains). How can we tolerate this? That total understanding is a fantasy and reality others will always get it just that bit wrong? That no matter how well you know someone, there will always be a mystery there that can’t be solved.