Meeting Time, Ethical Issues in Psychiatry

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I am heading to the annual meeting of the Association of Healthcare Journalists, have been occupied with paying work for a change, and cannot do the usual detailed post I do here. In the meantime, it’s worth flagging some recent health news that patients might want to think about.

Ethical Issues in Psychiatry

Last week, I was proud to post Martha Roberts’ excellent post titled “Mental health medication: is it always A Bad Thing?” She made a persuasive argument for life-saving mental health medications. Too often, anti-psych medication zealots, especially when it comes to psych meds, go overboard in questioning the need for mental health meds. Let’s not throw the baby out with the bath water.

Side Effects (2013) Poster

I’ll admit it is tempting, particularly when you see and recognize #badpharma in regards to clinical trials conduct and safety, psychiatrists’ shilling for the drug companies, and manipulation and release of incomplete data. We’ve seen a lot of this in psychiatry and perhaps because the whole field and medication world revolves around the mind, we find it especially repugnant.

Our antennas go up higher than say, when bad ethics are involved in say, pushing a blockbuster heart failure drug, rheumatoid arthritis biologic drug therapy, or an anti-rejection transplant medication. It’s far easier to relate to a problem with our moods.

A few weeks ago I saw the movie, Side Effects (spoiler alert so don’t look at the link if you plan to see the movie), which I reckon accurately reflects some of the more sinister sides of the pharmaceutical industry in marketing psych drugs and saving its hide. However you feel about the plot line, the psychiatrists in the movie, the pharma folks, and the legal teams, are reprehensible. It’s worth watching.

Then, yesterday, ProPublica released another Dollars for Docs report, implicating psychiatrists more than any other doctor group, spotlighting some who make more than $500K per year in payments from big pharma. People can look up their doctors on the ProPublica site; some may be astounded at the dollars big pharma spends on doctors. Maybe they will look elsewhere.

Surely, these stories are worrisome and things will only change with the public insisting regulators look at this and put policies in place to try to get a grip.

But is that tantamount to all psychiatrists being unethical, psych drugs being thrown at people willy-nilly by anyone you are likely to see, or your very own doctor most certainly being unacceptably on the till, I doubt it. I think we ought to tread very carefully.

What do you think is a reasonable follow-up to this news?

Mental health medication: is it always A Bad Thing?

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THIS is a guest post written by Martha Roberts, a journalist and mental health blogger in the UK, who writes the blog, Mentalhealthwise. Martha is on twitter @martharoberts01. Thank you, Martha.

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‘So when can you come off your medication, now you’re feeling so much better?’, someone asked me recently.
‘Well…um, never,’ I replied.
‘It’d be good if you could come off it at some point,’ they said.
‘But I’ll always have bipolar – why would I want to do that?’ I said, trying hard to keep my cool.

I know such questions are asked out of concern and kindness – with a bit of misunderstanding thrown in – but they still get me thinking, ‘Will I always have to explain this?’

pills for bipolar disorder.

pills for bipolar disorder.

Such conversations remind me of how people with conditions like mine (I have mixed affective state, a type of bipolar) still have so much further to go to proper understanding. And one of the big areas that needs to be talked about is medication.

Jennifer Lawrence, who won Best Actress at the Oscars for her role in Silver Linings Playbook (a film about bipolar and mental health), recently said: “It’s just so bizarre how in this world if you have asthma, you take asthma medication. If you have diabetes, you take diabetes medication. But as soon as you have to take medicine for your mind, it’s such a stigma behind it.”

I think I might write this on a postcard, laminate it and dole it out when I’m spent for explanations and ready to tear my hair out.

I think I’ll be handing it out a lot, and it’ll have to be laminated because I’m sure some people will want to tear it up in front of me as I warble on about why I agree with this view. That’s if responses to Rachel Whitehead’s recent article are anything to go by.

Rachel, who works in the Rethink Mental Illness press office, wrote a thought-provoking article in The Independent recently about the demonization of mental health medication.

“What I find worrying,” she says, “is the automatic assumption that a rise in prescriptions, or someone taking medication for a number of years, is necessarily A Bad Thing.

“Medication for mental illness can save lives and give people the stability they need to survive. That may be for a few months, it may be years. While no one wants to be on any kind of medication unnecessarily, for some people, it’s the best option.”

It seems her article has opened floodgates, with one person accusing her of proffering a ‘pro disease model and pro the pharmaceutical industry’, saying that psychiatry, which prescribes these drugs, is based on ‘fear, fraud and force’ rather than ‘health or ‘cures”.

However, others agree with her. One says, ‘I’m so fed up [with] the anti-medication brigade out there’ and another concurs, saying, ‘This medication works for me…I have struggled with this diagnosis for the best part of my life and there were many people telling me not to take [it]…It’s easy to talk for those who have no idea of the suffering of the condition.’

I agree with this. I went on meds after years of ‘talking therapies’ failed to do the trick. Talking therapies definitely have their place – few people seem to dispute that. But drugs have their place, too.

For me, these drugs have been truly health-restoring and life-changing. Of course, these are my views and my experiences. I completely accept that others probably have different ones.

However, it seems to me that if mental health drugs work for you it’s verboden to say so. I want to challenge that (and no, I am not being funded by the pharmaceutical industry) – the enduring view that psychiatric drugs are all ‘bad’ is the stuff that stigma is made of.

It seems it’s permissible to stand up and say, ‘These drugs gave me hideous side-effects and didn’t work for me’, but somehow contemptible and collusive (and suggestive of being ‘in the hands’ of the pharmaceutical companies) to say the opposite, to say, ‘They really helped’.

Why not be allowed to say medication has worked for you without it being implied you’re some kind of misguided prescription junkie?

Listen, I’m not saying mental health drugs are always appropriate – for example, they may be more helpful where there’s a clearcut biological basis like bipolar or psychosis than for other mental health issues.

And I’m not saying my drugs are perfect. How can they be? I would imagine there are very few drugs that have no side-effects. Mine have plenty.

For starters, I now live a ‘Cinderella life’. Every day at 7pm, without fail, an alarm goes off on my mobile and the word ‘Meds’ flashes up, and I know that within two hours of taking said medication, I have to drop what I’m doing and run before I hit the decks (the drugs make me so drowsy you could poke me in the eye with a stick and I think I’d just roll over and snore).

If friends say, ‘Let’s meet up’, I’ll generally vote for an early rendezvous (note: mornings and afternoons are great…). If I take my drugs any later, I get a supreme ‘hangover’ the next day and feel like I’m wading through treacle until sunset allows me to sleep again.

I recently read that Carrie Fisher, actress and fellow bipolar gal, said of her daily drugs regime: “This constantly puts me in touch with the illness I have. I’m never quite allowed to be free of that for a day.”

This is how I feel, too. No matter what I’m doing, no matter how ‘normal’ the task or action I’m in the middle of, the alarm is like a bump back down to earth, reminding me that there’s something different about how I now live my life.

If I don’t take the drugs at all, I feel fine (presumably they have a half-life) but immediately have a shocking night’s sleep where my mind races and my fingers fidget with imaginary touch-typing or piano-playing. In other words, how it always was before meds.

I then worry this will set me on track for what I call a bipolar depressive ‘wobble’ (my drugs have also made me realise how I spent years sleeping fitfully, despite regular attempts at ‘sleep hygiene’).

The drugs also mean I’ve put on a bit of weight, and I can’t drink, smoke or have caffeine. I have to have quarterly ECGs because the drugs could cause prolonged QT intervals in my heart which could lead to my heart just stopping. I also have to have regular blood tests because the drugs are known to raise blood cholesterol which could put me at risk of heart disease. Oh, and I may get cataracts. Great.

I guess this is where the pharma critics find their fodder – ‘How can it be good that this woman is subject to all these side-effects?!’ I understand the anxiety. I also understand that prescribing can be about trial and error, and I can see why people – doctors as well as patients – find this unacceptable.

It’s true to say, too, that psychiatric meds have acquired something of a bad reputation over the years, partly due, it’s true, to inappropriate or indiscriminate use; for example, mass use of benzodiazepines in the 1970s, leading to addiction. Many people also feel that ADHD medications have been over-used in children, especially in the US.

As Dr Ian Drever, consultant psychiatrist at The Priory Woking, tells me: “In time-pressured NHS environments, prescribing a medication may be an easier and more readily-available solution than providing long-term and resource-heavy psychological work. So against that background, it’s possible to see how many people are wary of medication, and see any proponents of medication as being ‘in the pocket’ of big pharma.”

Last year Dr Ben Goldacre, author of The Guardian’s ‘Bad Science’ column, published Bad Pharma, a book in which he describes how there are serious ongoing problems in the pharmaceutical industry, in particular with clinical trials. He says important information from them is still being withheld from doctors and patients and that patients experience avoidable suffering and death as a consequence.

It goes without saying that this needs to change. Thank goodness Ben Goldacre, with his influential voice and dogged determination, is campaigning to do something about it.

But whilst it appears that challenging pharma companies in this way is vital for patient health and safety, it shouldn’t detract from the fact that some people, like me, appear to need medication and seem to benefit from it greatly.

I acknowledge that I was lucky that I found a medication and dose that appears to work for me pretty much straight away (I know many others aren’t so fortunate and take forever to get there, if at all). I’m also aware that the side-effects may come back to bite me in years to come.

In an ideal world it would be marvellous to find a drug that was side-effect free. And maybe, over the next few years, with more R&D by pharma companies who are well-placed to fund this, I may end up with one.

In the meantime, I feel it’s important to acknowledge, where appropriate, that for some people like me the drugs have affected me positively, too.

Before the drugs, I was up and down within the same day, or more precisely, within the same minute within the same hour within the same day. Mostly I was hideously depressed. I was sick and sad whilst also trying to mother, to work, to be a friend and to deal with difficult times. I feel I barely managed it. I don’t think it’s any exaggeration to say I felt like I was hurtling towards my own demise because I felt so unable to function effectively. I felt fractured and with no way of getting fixed, no matter how hard I tried.

And so, I may now be at risk of living a shorter life because of heart problems or other iatrogenic issues, but I’m hoping I’ll live longer than I would have done before meds because I am no longer feeling ill and broken.

It also means that I am better able to utilise therapy appointments because they are now constructive, working towards better ways of managing my condition – before, they were more about crisis intervention, with little space for true change.

Dr Drever, who specialises in depression, anxiety and addictions, says medication can “help to improve mood, or diminish anxiety, thus creating a foundation on which the psychological work can take place to maximum effect.” I agree – my meds and talking therapies are something of a ‘team’, facilitating wellness where talking alone was unsuccessful.

Even my daily 7pm alarm cry has started to become a welcomed interruption. It may be a reminder of my illness but it’s also a reminder of my wellness. It is constant proof that I have a diagnosis and am able to do something about it.

I’m actually one of the lucky ones, not a ‘poor sod’ who has been ‘dumped on medication’. I now have more constancy and stability in my life as a result of medication. In Rachel Whitehead’s words, meds for me haven’t been A Bad Thing.

If more people realised that they might just be a good thing, then maybe people would feel less freaked out by them and the stigma would start to fall away.

Now, where’s my laminating machine? I think I’m going to be busy…

Mental Health and the Patient Point of View:
More High-Quality Stories Needed

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I am thrilled that later today, Martha Roberts’ post on her own experience taking medication for mental illness, will run here. I first came across her post through a tweet from Ben Goldacre, author of Bad Pharma. It’s nice to know that he has not oversimplified the “bad pharma” argument into this meme: all drugs are inevitably bad for mental illness, overused, and inappropriate. Yes, there are huge problems with selective publishing of clinical trials data, withholding negative drug trials, and more. But mental health and mental illness are a lot more nuanced than a simple meme.

A lot more ink needs to be written about mental illnesses from the patient point of view, that show the real-life hurdles of people unfairly stigmatized, unemployed, or under-employed. I hope that this upcoming post (I’ll link to it here) is the first of many more.

If you have something to say about this, use the comments, or if you have a longer contribution, email me at patientpov “at” gmail dot com.

Mental Health for the 99% Following Hurricane Sandy

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Two weeks after Hurricane Sandy and a Nor’Easter that left thousands of New Yorkers without light, heat, and power for weeks, many New Yorkers were understandably shaken. Some had endured 911 and the disruption, though of an entirely different cause, elicited an anniversary stress reaction. Deaths, drownings, and unacceptable losses happened here and in many other areas.

In New York, I tried assisting a friend get psychiatric help who was traumatized after 911. She feared that she’d sink into the morass that she did following 911.
Here’s the picture that emerged:

>Many psychiatrists in New York City take no insurance. For many people, this means 100% out of pocket, or possibly a small reimbursement.
>Trauma and post-traumatic stress disorder are not something primary care physicians (PCPs) want to deal with, nor is it appropriate for them. Let’s hope health plans don’t think it is within their purview.
>Many PCPs in New York City have no psychiatric referrals to offer patients that are in network.
>Many major academic medical centers in the 5 boroughs have no participating psychiatrists at all in the largest health plans in the area. How can that be?
>Listings of participating psychiatrists in health plan networks are enormously inaccurate: psychiatrists tell you that they have not been on these plans for years.
>One friend in need got two off-network psychiatrists to consult with: the first offered a first visit for two hours at $695, followed by repeat visits of $350.
>She reached that one after ten calls to psychiatrists off list.

I know that this is not unique to New York, nor is it unique to mental health. What do you think should be done to change this? Are there more equitable ways to be sure mental health services serve people most in need?

Conflict of Interest, Health Advocacy Organizations, and Patients

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As a follow-up to my post yesterday addressing disclosure and health advocacy groups and nonprofits, I have looked into this further online.  And it is not that I think that advocates or advocacy groups are corrupt: I think advocates are important. I just think we ought to know if a pain group has huge dollars from Medtronic, Eli Lilly gives to mental health advocacy, or electronic health record suppliers are giving dollars to advocacy organizations or advocates pressing for them. Then, we can listen, keeping that in mind.

I have turned to advocacy organizations for advice sorting out health problems for myself, family, and friends. I’d rather not be caught by surprise that someone might be promoting a treatment, a facility, or a medical device, only to learn later that they have stock options or receive dollars for touting them. I want to see this up front. And it is not so much that I want a pure situation. I am not sure that this is possible. It turns out that I am not the only one out there who has flagged this as worrisome.

In January, Sheila Rothman and coauthors from Columbia University, wrote an article about mental health advocacy groups’ relationships with Eli Lilly in the American Journal of Public Health. Rothman raises important questions about variation in disclosure in relation to mental health advocacy groups. In health policy, we talk about variation as a problem, with overuse, underuse, and appropriate use of science-based practices. It’s a key concept among health reformers who are trying to make medical care based on the best available concept. Variation in disclosure practices needs to be examined and standardized practices need to be adopted for the public’s health

What Rothman reports is that 161 health advocacy groups received $3.2 million in payments from Eli Lilly, yet only one-quarter of those groups disclosed it at all on public websites that we turn to daily in a Google search. Further, only 1 in 10 identified Lilly as a sponsor; not a single one revealed the amount of dollars received. Like Rothman, I am not saying taking money is corrupt, but there should be a transparent way to see the exact dollars that the nonprofit, health advocacy group or patient advocate gets, so that the public and government can decide for themselves.

Rothman is not the only one to raise this issue. You can find articles in the medical literature on this, dating back years. Some bloggers have been critical as well.

My heart goes out to people who have terrible diseases or conditions. I admire people who devote themselves to outreach and organizing stellar programs for patients like them. In the course of caring for themselves, some have started nonprofits dedicated to advancing care. I am not entirely certain, though, that parents or family members can simply say that they are not affected by grants by the drug and device manufacturers.

I am raising this because it is an important issue as I continue blogging. I’ll undoubtedly return to this issue. I am interested in your views on this situation.