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?

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

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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

EDAW’13: Now that I don’t have an eating disorder…

Cake: Something I enjoy.

Cake: Much tastier without a side of guilt and self-loathing.

So today’s the last day of this year’s Eating Disorder Awareness Week. I’ve read the blog-posts, the newspaper articles and watched the campaign videos – there’s been some fantastic stuff this year. And I’ve spent quite a bit of the week thinking about what my offering would be. Last year I wrote this post about how difficult it is to spot someone suffering from an eating disorder.

The days ticked on. And I realised that maybe the reason I’m struggling to engage with this topic is that, really, I don’t have an eating disorder.

I used to. I had an eating disorder for 6 years and recovery, like the onset, has snuck insidiously into my life. At first it was all big steps, exceptions and firsts. Challenges and a lot of tears. But slowly, it started becoming more and more everyday until I reached a point where I don’t really remember the last time I engaged in some typically ‘eating disordered’ behaviour. Every time I eat a typical meal or don’t beat myself up about gaining a couple of pounds, it’s not ‘a step in recovery‘, it’s just ‘living‘.

It’s taken a long time and a lot of work to get here, and I don’t want to lose track of that. I’ve done a whole lot of treatment (thank you NHS!) and I’ve had some brilliant support from my long-suffering friends, family and partners. It didn’t ‘just happen’, but then, suddenly, here I am. I have off-days and times when I get down about my body, but they’re not extreme and they don’t restrict my life. So I thought this year I’d reflect on some of the quiet achievements of recovery and living in (relative) balance with food and my body. I’d like to encourage others still stuck in ED-hell that recovery, though not easy, really is possible. And life on the other side is rather good.

Now that I don’t have an eating disorder…

  • I go out to dinner, to parties and events. I don’t have to live in fear of a buffet being suddenly sprung on me! And these events don’t revolve around the food, I can focus on being together with others.
  • I have no ‘forbidden’ foods. I eat all sorts of food. Sometimes I go for a very indulgent meal or eat a whole packet of biscuits and I don’t really care because everyone does that and one day of indulgence will not make me balloon-out. 
  • I don’t cry when I go clothes shopping. I go get another size. Or just shop online.
  • Sometimes I gain weight. And sometimes I lose weight. It doesn’t have a huge impact on my day/week/month. I actually rarely weigh myself.
  • There are things about my appearance I’m not so keen on. I still have hang-ups and insecurities. But I don’t think anyone has a 100% positive body-image. However, looking in the mirror and not liking how I look doesn’t stop me going out and doing the things I want to do.
  • When someone tells me I look ‘well’ or ‘healthy’ I don’t automatically assume that they mean I’ve put on weight. I can actually take a compliment now!
  • I don’t get into ‘diet talks’. They really bore me. Diets have had enough of my life already.
  • I can think about things other than food, weight, body sizes and the massive long lists of numbers (calories, time in the gym, km run, inches round the waist) that an eating disorder can involve. There’s so much space inside my head now to think so many different things.

So well done to everyone involved in the week raising awareness, there’s still so much more to do but every year I feel like people are becoming more sensitive and understanding of eating disorders.

Unmentionables: Talking about sex in the healthcare setting

'The Sessions', in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life

‘The Sessions’, in which a disabled man sees a sex worker, draws attention to the desire for individuals with disabilities to enjoy a sex-life just as much as the able-bodied.

Doctors, psychologists and other healthcare professionals, both in mental and physical health, are used to talking about difficult subjects. Bowel movements, terminal diagnoses, suicide and self-harm, tricky topics are a standard part of the job. Yet somehow when it comes to sex, many struggle to find the words or avoid the topic all together.

Sex, whether defined by sexual acts, more generally as intimacy or in many other ways, is an important human need. It contributes highly to individuals’ quality of life. On Maslow’s famous Hierarchy of Needs it comes only after physiological and safety needs in terms of importance. I think I can go as far as to say that changes or difficulties relating to sex are common to the majority both physical and mental health problems, whether they relate directly to the symptoms (e.g. impact of pain and limb weakness on sex positions, hypersexuality in mania) or are secondary to medication used to treat the problem or further consequences (such as impact of taking on a sick/carer role, self-consciousness relating to skin conditions). Anti-depressants are very widely prescribed, yet often information on the (common) sexual side-effects is left to be read in the small print. I’m reminded of a quote from Ben Goldacre on SSRIs,

“ I’m trying to phrase this as neutrally as possible, I really enjoy the sensation of orgasm. It’s important to me, and everything I experience in the world tells me that this sensation is important to other people too. Wars have been fought, essentially, for the sensation of orgasm.”

Stroke for example, is a condition where sexual dysfunction has been well documented. Yet in research speaking to rehab staff, they rarely brought the topic up with clients and on the occasion when it was brought up, staff often felt embarrassed and uninformed (McLaughlin & Cregan, 2005). Reasons given for staff not approaching the topic also included fear of upsetting clients and there has been other research suggesting that (often unconscious) stereotypes relating to sex, relationships, illness and disability, play a role in this silence. Although sex problems have been particularly highlighted in stroke, there is evidence that these staff attitudes and difficulties exist in a variety of settings and in relation to many other conditions. Whilst working in a clinic for Chronic Fatigue, I approached staff about the possibility of including sex and relationships as a topic to include in a psycho-education group, and was met with quite a dismissive response. It was too sensitive, and time was needed for other important areas. However, a friend with the condition informed me that on a service-user forum, the sections relating to questions and advice about sex were by far the most used. Service-users often have to go and seek out their own information because professionals fail to provide it.

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Speak Your Mind – Al Shep’s Typographical Art

Today’s unexpected find is Manchester-based artist Al Shep. His work is type based and often involves words and phrases stensilled onto the back of cardboard packaging. His messages can be found around the town on stickers, posters, spray paint and stensils cut into wood, dirt and even ice.

Mental health seems to be a big focus of his art. Phrases from diagnostic criteria and patient-information leaflets are presented out of context, seeming to ridicule their reductionism and detachment. Other pieces use bold, simple phrases that seem to capture the experience of the sufferer so acutely that you want to hold up his signs and say ‘that’s it, exactly’.

As with many street artists, he’s rather illusive and I haven’t been able to find much in terms of information on him. Find him on flickr here.

Eating Disorder Awareness Week – Can you spot a sufferer?

Yesterday began the UK’s Eating Disorder Awarreness Week, flagged up by charity B-eat. the year is littered with various ‘awareness’ and appreciation days, weeks and months, making them all too easy to meet. Why should we pay attention to this one? Do eating disorders really need more awareness? Arguably they’re one of the most sensationalised mental health problems, providing women’s weeklies and gossip rags an endless supply of material, along with photographs of emaciated beings. There’s an argument that this publicity does more harm than good, teaching young people that throwing up and skipping meals is a viable way of losing weight. When you think of eating disorders, what kind of image comes to mind? Nicole Richie? Mary-Kate Olsen? Red-carpet shots of protruding ribs or an image of a supermodel nibbling on a lettuce leaf?

For the majority, this is not the true face of eating disorders, and this is what needs greater awareness. An eating disorder may exist in a stereotypical teenage girl who aspires to look like a model and goes on a starvation diet, but they could also be a middle-aged single mother, binging after her children are asleep and then overdosing on diet drugs and laxatives. Body-image campaigners Body Gossip have spoken about this far better than I could, so I’ll leave you with a few links to some fantatastic websites and a few stats.

  • The stereotype of eating disorders is a teenager/young woman, white, heterosexual, middle-class, wanting to lose weight. But eating disorders occur in men and women of all ages and backgrounds. Suffers may have no obvious outward signs of their disorder and may be very successful in other areas of their lives, so the problem goes unnoticed. Not all sufferers want to lose weight, be thinner or be more attractive, the disorder can begin for many different reasons. Some sufferers may actively want to make themselves less attractive. 
  • The majority of individuals with eating disorders will be of ‘normal’ weight, or overweight. Many cases of obesity are due to a binge-eating disorder. Services for individuals who are not at a ‘dangerous’ weight can be very limited, adding to the stigma that one must be underweight to have an eating disorder and be ‘worthy’ of help. Ilona Burton’s fantastic article ‘But you don’t LOOK anorexic’ is well-worth reading.
  • Anorexia is probably the best-known eating disorder, but only accounts for about 10% of cases. 40% have bulimia and the remaining 50% are often categorised as ‘Eating disorder not-otherwise specified’. These are disorders that do not meet the AN or BN criteria and may include: all symptoms of anorexia but being a ‘normal’ weight, binging and purging less often, abuse of diet-drugs, eating non-food items, purging without binging, binging without compensatory behaviour, eating a very selective diet such as avoidance or fear of a particular food/group, difficulties relating to swallowing.
  • All eating disorders, regardless of the individual’s weight, are dangerous. Binging, purging, over-exercising, use of laxatives and diet-drugs can have very serious physical effects including electrolyte imbalance, risk of diabetes, fainting, osteoporosis, obesity, tooth damage amongst others. Sufferers of eating disorders are also at high risk of suicide, self-harm and problematic drug and alcohol use.
  • Eating disorders have been seen in children of 6 and adults above pension age. Often these conditions are misdiagnosed or not picked up. Although age of onset is often between 15 and 30, many sufferers may take the disorder with them through their lives.
  • An estimated 10-15% of eating disorder suffers are male, though the real figure may be greater as many do not come forward for treatment due to the stigma attached. Check out the wonderful MGET for more details.
  • There is often overlap with Body Dysmorphic Disorder, where individuals have a distorted view of their body and may go to frantic and obsessive lengths to change or conceal it. Recently more attention is being given to Muscle Dysmorphia, a condition where individuals believe they are weak and ‘puny’ and may abuse steroids and over-exercise in attempts to build up muscle. This condition is seen more frequently in men than women.
  • Eating disorders can be beaten! It often takes a lot of time, support, patience and determination from both the sufferer and the people around them. There will be set-backs and relapses, but recovery is very much possible and worth it.

More facts and figures at B-eat. 

So there’s my bit! Don’t forget, the Re-Capture exhibition (which features one of my photos) launched today in Edinburgh and will be on at Scottish Parliament on the 27th February – 2nd March, in the Garden Lobby. More on the project here. You can also see my article on body image distortions and obsessions in our culture here.

Ordinary Obsessions

When I left eating disorder treatment I wanted to love myself and my body. Love, not just like. Not just tolerate, put up with, make-do. I wanted to look in the mirror and smile at the person standing there, feel that that was someone worth being. Turn around, do a twirl, and love the me-ness reflecting out.

I was 18 and I’d been in out-patient treatment for a year. I’d been to countless assessments and therapy sessions, cried in front of various stern professionals, and grudgingly, bite by painful bite, I’d put the weight back on. I was crawling back to wellness. But it had been worth it. When my body had enough energy to power it, the world didn’t feel like quite such a fearful place. I began to venture out, to open my mouth, smile and rekindle the friendships my illness had tossed aside.  Something warm began to grow in me.

When the clasps of this monster started to loosen, I felt like I could finally see the full extent of the horror I’d led myself into. The scars on my limbs, the downy hair that now grows permanently from my cheeks, my back and chest.  The dull ache in my fragile, calcium-deficient bones. The feeling of grief for the younger-me began to turn into an anger. Why had being thin, being ‘beautiful’ been so important that I had risked my life and hurt so many others for it? I felt desperately sad for everyone else still stuck in the pain I had felt. I wanted to lash out at the world that had planted such ideas in my head. I was a born-again body-confidence evangelist. Working Saturdays in a local book-shop I felt a surge of rage at the shelves in the ‘health’ section.  Filled with tones of empty promises for the perfect figure and the perfect life; through a few simple dietary instructions. Why should we sell so many of these ugly things, when we didn’t have a single copy of ‘Lolita’, or ‘Oranges Are Not The Only Fruit’? But there was a demand that kept the books in stock.

At the eating disorder clinic, there were no fashion or gossip magazines in the waiting room. Only rather dull publications on gardening, interior design and current affairs. At the time I found this rather patronising, that they feared that a photo of a supermodel would be so wretchedly triggering that I wouldn’t be able to bare it. But looking back on it, I think about how they’d tried to keep the clinic a safe space, away from the blare of the appearance-obsessed media. A rare haven away from the storm. It was a token-effort, but I can appreciate it.

In treatment you learn that ‘normal’ people do not keep their bodies at an unhealthy weight, or go to such extremes to lose and maintain weight. The dietician gave me a plan of ‘normal’ eating, with three balanced meals a day, plus snacks in between. ‘Normal’ people feel hunger, and then they eat. And they’re able to stop eating when they’re full. And then they carry on with their day. ‘Normal’ people do not wake up in the middle of the night sweating because they dreamt they went downstairs and ate everything in the fridge. ‘Normal’ people do not burst into tears when trying on jeans in Topshop.

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