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

stages-change

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?

Continue reading

Tested and found wanting: The experience of completing cognitive assessment 

This piece was originally written as a shorter commentary of a piece in Clinical Psychology Forum. It was scheduled to be published but then got put on hold amidst their various special issues so I thought I’d share it here.

For those unfamiliar, neuropsychological assessment (also referred to as psychometric or cognitive testing) refers  to the process by which professionals (usually but not exclusively by clinical and eductional psychologists) aassess cognitive functioning. This usually involves carrying out a series of tests and tasks with an individual that cover a range of cognitive skills, including memory, concentration, planning, organising, language and visuo-spatial abilities. An IQ test is a form of this testing. Situations in which an assessment might be requested include assessing the impact of a brain injury, asssessing for the presence of dementia, learning disabilitiy or specific learning difficulty. A neuropsychological assessment can provide useful information for gaining a greater understanding of an individual’s difficulties and considering interventions that might help them. 


From my own experience, neuropsychologial assessment is often not a favourie activity for psychologists. Some people see it as impersonal and rather arbitary – just running through tests that seem to have little relevance to everyay life in an automated fashion. It can be hard to see the person beyond the list of test scores andpercentiles  generated. I think some of the issue here is the way that neuropsychological assessment is taught and written about. Often there is a lot of foccus on selecting tests, carrying them out in a standardised way (which is of course important), scoring and analysing the data, looking for patterns. What can be left out is how to use neuropsychologial assessment information within a clinical formulation, consideration of ethical issues raised by the testing and how to best use interpersonal and thereputic skills within the assessment.

There has been increasing discussion around separating out clinical neuropsychology from standard clinical psychology training. This isn’t a move I suppport  and I think it’s essential to highlight how the core skills and knowledge of the clinical psychologist are incorporated in neuropsychologial work, including  when carrying out a good quality assessment. If we don’t bring psychology to these assessments, we may as well have clients complete them on a computer. Time pressures and perhaps a lack of professional enthusiasm for neuropsychological tetsing can squeeze out some of the human component. Below I detail a few areas that I believe are  sometimes left out and require attention.

The Stroop Test, one of the best known psychometric tests, is used to measure switching and inhibition (components of executive functioning)


Informed consent

The client’s consent to complete the assessment should always be sought. It is not uncommon for individuals to arrive at their session with little idea of what to expect, and less so the potential implications of the results. We should inform clients of the benefits of the assessment but it is important to also discuss potential negatives. The results may have a far-reaching impact, including contributing to the allocation of a diagnostic label and the potential stigma of this (such as intellectual disability), impact on eligibility for services and associated benefits including fitness to hold a driving liccense. Ideally this is a time for collaborative discussion about the questions the client would like the assessment to answer, and tthis can be used to plan the assessment. Misunderstanding the purpose of the assessment may also impact on the level of effort that clients put in. These converations take time and may be difficult to achieve when there is pressure from referers and other parties to get the assessment ddone quickly or not to “encourage” the client to decline the assessment. 


Creating meaning within the assesment 

In addition to contributing to formulation and intervention planning, there is potential for the assessment itself to be a meaningful and therapeutic experienceThe assessment may be the first time the client has had their difficulties heard and given sufficient attention, and psychometrics may provide a medium for discussing issues that can feel intangible and hard to express to others. IIve been amazed at the relief some clients have flt when I was able to give them words to describe previously nebulous difficulties. AAssessments can be long and stressful, they put people through their paces and can highlight the very things people find most difficult. Rapport needs to be built and maintained throughout the assessment to keep clients engaged, and empathic support provided if the experience triggers anxiety.


Feedback – Concluding the proccess

The provision of feedback brings the assessment results together and maximises the opportunities for the client to understand the outcome of the process and to take away something useful. Providing personalised feedback can enhance clients’ sense of control and engagement in their treatment. It can also be an opportunity to provide psychoeducationand discuss strategies for managing cognitive difficulties. The provision of thoughtful and sensitive feedback is especially important when the results indicate impairment or are suggestive of pathology. Feeding back need not always be a lengthy process and not all clients will wish to have a formal session, but offering this validates the time and effort they have put in to what can be a stressful experience, and also represents a conclusion to the piece of work.


The recent viewpoint article in The Psychologist magazine exemplifies a worst-case scenario where a neuropsychological assessment is experienced as a disjointed process without meaning. 


“The psychologists produced a range of memory, attention and executive function neuropsychological tests without telling me the names of the tests or why it was important for me to complete the assessment. I performed these tests obediently while feeling immense frustration and confusion inside. The results of the tests were never revealed to me. Strangely, the implications of my injury were never highlighted and coping strategies were not discussed. Instead, I spent hours performing these monotonous and challenging neuropsychological tests, while trying to deal with the emotional impact of the car accident and my brain injury alone.”


Experiences like these are regrettable and really an embaressment to the profession. Collaboration is however very possible and can bring the focus back to the client and their needs, helping them to get the most from the process.

 

Wounded healer or undercover crazy? Coming out (quietly)

Diana-Ross-Im-Coming-Out-226813

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.

Continue reading

X-rated Mind-Control: Why do we think watching porn is risky?

XXX

I’m currently working in a Learning Disability team (supporting adults who have low intellectual ability that causes significant functional and social impairment) and I came across the ‘Three Rs’ guide, which provides guidance on providing sex education, including several more controversial and problematic topics. One of these topics is pornography. The authors state that they do not recommend aiding a person with LD to access porn, as it gives unrealistic messages about sex and women. When I first read this I thought this view was quite narrow-minded. Adults without an LD can access porn without anyone else’s permission. There’s no one questioning how ‘realistic’ the porn they watch is, so shouldn’t adults with LD be able t to enjoy their sexuality in this way? Also is this a narrow-minded view of porn that carries with it assumptions of how porn influences behaviour?

I’m not an expert on the literature on how porn influences thought and behaviour (and if anyone knows any good papers I’d be interested in reading them), here I’m more interested in considering why it is we assume porn does influence us, even in the absence of evidence. Wikipedia has a bit of a summary on the mostly inconclusive and conflicting findings here

I’ve been considering the authors’ point of view. It’s made me wonder how much porn influences actual sexual behaviour, and also how much people think porn influences sexual behaviour (which may be quite different things!). Anti-porn campaigners feel strongly that porn distorts our views of bodies, women and sex/intimacy. Porn is said to be anti-women and exploitative and has been linked to increased pressure on women to engage in sex acts, and change their bodies to resemble those of porn-stars. I’m not sure what the actual evidence is that this happens. The allegations remind me of claims that violent films and computer games make people more violent, which has often been debated but very lacking in concrete evidence. What I do know is that porn as a topic tends to upset people and bring up strong emotions. Porn is frequently depicted as something unhealthy, deviant and a a threat to ‘normal’ relationships and sex. We don’t like to talk about it, but a very large proportion of adults (both male and female) enjoy porn as part of their sex life, without any obvious negative consequences.

Porn is essentially fantasy. In order to enjoy watching porn, and feeling turned on, there perhaps needs to be certain suspension of critical thinking. On some level you need to believe it’s real so you can enjoy it without thoughts like “Is she really enjoying that? Was that a fake orgasm? Would a plumber really be that easily seduced on the job?” Admittedly this might be easier with some porn that others! But it isn’t real, and part of the appeal is just that, it’s the sex you wish you were having, perhaps removed from inhibitions and other barriers, the women you wish you were having sex with, it’s the enactment of fantasies. Porn also provides gratification without any of the effortful interaction with another person. So people know it isn’t real yet they still enjoy it.

But how is it that you understand that porn isn’t real? I’d guess this is mostly a process of comparison, having enough experience of real-life men and women and sex to be able to identify which aspects of porn are less than realistic. And some people might be in a better position to engage in this kind of critique than others. If you have limited experience of sex (e.g. young people who may not yet be sexually active or people who are quite socially isolated) you might not have much of a basis to discriminate. Certain complex cognitive skills might also be necessary in order to discriminate between porn and reality and consider that what porn shows to be ‘true’ may not be so for others. If someone has cognitive abilities that are impaired or not fully developed (such as a child), this process might be a lot more difficult. Ideally good quality sex education would help someone to learn the discrepancies between porn and real-life sex, but this may not always be available in a timely and detailed manner. For some people, porn may be the only way they learn about sex. If this is the case, family and school have really let them down, and it makes sense that they might develop some more distorted views about sex and women.

More on ‘rape-porn’ and links to risk under cut…

Continue reading

Doctors stole my baby! The curious phenomena of the phantom pregnancy

A7GEAW_2378638b

This morning newspapers carried the story of a young Brazilian woman who is taking legal action against a hospital, claiming they have stolen her baby, or covered up its death. She entered the hospital visibly pregnant, complaining of abdominal pain and vaginal bleeding. She was anaesthetised for an emergency c-section, but woke up without a baby. The hospital are claiming that this was a case of ‘phantom pregnancy‘.

V.S. Ramachandran describes the bizarre phenomena of pseudocyesis or ‘hysterical pregnancy’ in his book ‘Phantoms In The Brain‘. The body develops many of the physical signs of pregnancy, accompanied by a strong belief that the individual truly is pregnant. Individuals may experience swelling in the abdomen, changes in menstruation, depositing of fat around the belly and lactation, amongst other symptoms. Often it will only take an in-depth examination from a medical professional to discern that a foetus is not present.

In some mammals such as cats and dogs, pseudo-pregnancy is more common and has been linked to the continued presence of the corpus luteum, which causes the signs of pregnancy. In humans the condition is believed to be psychological in origin and to relate to an overwhelming desire to have a child. Pseudocyesis is however, rare today. In the late 1700s, one in 200 pregnancies were believed to be ‘phantoms’. Now the incidence is closer to one in 10,000. This has been linked to changes over time in the pressures on women to conceive and give offspring, as well as advances in scanning techniques. In the modern age, an ultrasound can easy confirm a pregnancy. In previous centuries women might receive little education on pregnancy and childbirth and would have had little way of confirming a pregnancy other than going on outward physical signs. Many would have had little contact with a midwife prior to the birth. Indeed, often presenting the women with the ‘evidence’ of her (un)pregnancy is enough to resolve the condition. The pregnancy is not staged by the woman (though many people have lied about a pregnancy for secondary gain, few are actually capable of manipulating their own hormonal levels or altering the position of their spine). Men too have been seen to develop some phsyical symptoms in a ‘sympathic pregnancy’ (otherwise known as Couvade Syndrome), although this tends not to be accompanied with the same strong belief of pregnancy.

Pseudocyesis appears quite strange, although it has some similarities with the better known ‘placebo effect’ (when individuals’ health improves when they believe they are receiving treatment, regardless of whether the treatment is active), offers a fascinating insight into the way our minds can control our bodies, seemingly beyond our conscious awareness.

Layane Santos displays her visibly swollen belly

So what is happening in the case of Layane Santos? If, as she states, she had previously had an ultrasound that confirmed the birth, this would be convincing evidence that she really was pregnant.The hospital claims to have run tests before the ‘delivery’ that showed she was not carrying a baby. It is therefore a little questionable as to why they are not revealing these results, or why indeed they chose to anaesthetise Santos at all. If she was indeed not pregnant, the evidence of such should be straight-forward.

Undoubtedly the couple very much wanted a child and were quite invested in the pregnancy (as many couples are). A Brazilian newspaper claims that they had “already named their daughter Sofia, moved to a bigger house and had spent $3000 on clothes and furniture for their first child“. In pseudocyesis, although the pregnancy is not ‘real’, the news that one will not have a baby is obviously very distressing and there may be disbelief, given the many physical symptoms, that they were not pregnant.

It seems unlikely that a hospital would ‘steal’ a child, but while the hospital withhold details of their tests, it cannot be confirmed that Ms Santos was not pregnant. I shall be watching this case with interest…

(Images from GoogleImages)

Layane Santos

25 Years Later: A psychologist in the end of days

The Road.
What does it take for the human spirit to survive?

Recently I was asked to contribute to an article on where I saw myself and my profession in 25 years. This seemed a very daunting prospect. Though I’ve known for a long time that I wanted to train as a psychologist, for much of my educational and working life I’ve been very focused on my next steps, the next couple of years, just finishing this qualification, getting the next job. 25 years on feels almost unimaginable.

And there’s another issue. Some people say that in the coming years the NHS might not exist. I’ve got greater concerns. I can’t say I’m overly convinced that in 25 years the world, as we know it today, will really exist. Maybe I’ve watched too many zombie films and read a bit too much post-apocalyptic fiction, but you only have to turn on the news to hear daily about nuclear weapons, natural disasters and outbreaks of disease – things aren’t going well. And in 25 years… I fully expect that those of us that are left will be living in bunkers underground, following some kind of large-scale disaster that will wipe out the world’s cities and most of the population.

So our modern world is probably coming to an end. But I think I’ll be ok. I may be rather lacking in survival and combat skills, I’m not sure I could decapitate a Triffid or shoot a zombie, but I think as a psychologist (I’ll be qualified by then, not that it’ll matter a lot when universities, the BPS and the Healthcare Professionals Council cease to be) I’ll have some essential skills to help in rebuilding a shell-shocked world.

Professional Identity

Given everything that’s gone down, some of the niceties of the professional will probably be going out the window. I’ll be taking psychology out to the people as and when it’s needed, so I’ll be out of the clinic and getting a bit grubby. Smart trousers and sensible shoes will be out; I see myself as dressing somewhere between Tank Girl and a character from Fallout. Probably carrying some kind of weapon. There’ll be a bit of scrambling around. As a psychologist, I’m used to working in a team and taking on a variety of roles and being a spokesperson for mental health, personal development and identity. Now I’ll also be taking on roles as something of an educator, communicator, mediator and support worker.

Trauma, adaptation and survival

Living in a post-apocalyptic society, loss and death will be even more a part of our lives than they are now. I think I’ll be taking a key role in helping people in the community to come to terms with thing, accepting what has happened and adapting to a new way of life. There are likely to have been a lot of individuals who have had traumatic experiences and complicated bereavement and there will be a place for education and individual and group-based targeted interventions. People may have to live with some longer-term medical conditions (inc neurological conditions) and difficulties that there won’t be the resources to support, as there once was. We’ll all need to adapt to survive. This might sound like a lot of misery, but I think there’ll actually be a lot of room for post-traumatic growth and developing resilience. Many people will have shared difficult experiences and I think this could bring people closer together in supporting each other and overcoming adversity. Sometimes these kind of experiences can really shake people up, but also make you appreciate what you have and give you a refreshed perspective on life. In a world where money and material possessions hold less weight, I think people might actually find themselves happier living a simpler kind of life and taking up meaningful occupation in supporting the community. It might be useful to think about the level of depression (and PTSD-type symptoms) in communities around the world where death, disaster and poverty are common-place; people find a way to live through and grow despite extreme adversity. Viktor Frankl will be essential reading for everyone.

Continue reading

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.