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‘Writing about Beethoven helped me come to terms with my own hearing loss’

As someone who makes a living as both a soprano and a playwright, I should find Beethoven an obvious subject of interest. Even more so now, as 18 months ago I was diagnosed with a hearing loss condition called acoustic neuroma or vestibular schwannoma, which will eventually lead to complete hearing loss in my right ear. I already often sleep through my alarm if I have my good ear jammed into my pillow.

One in six people suffer some form of hearing loss. There is no reason to suppose musicians are magically exempt from that statistic. Yet you wouldn’t know it. That fear of admitting to hearing loss hasn’t changed since Beethoven’s day. It is still simply too risky. Hearing is an essential tool for a musician, and human beings are not very good at understanding subtleties: that it is possible to have hearing loss, yet still hear enough to continue being a musician.

But I almost certainly wouldn’t have chosen to write a play about Beethoven were it not for Krysia Osostowicz, leader of the Dante Quartet. We met shortly after my diagnosis, ostensibly to discuss fundraising for the quartet’s tour of Japan. But instead we ended up talking about their plans to perform the entire cycle of Beethoven’s 16 or 17 string quartets (depending on how you count them) over six concerts. Krysia had ideas for combining the quartets with readings and narrative. I told her about the positive reactions to my work with the Marian Consort for their performances of my concert-cum-play Breaking the Rules, about 16th-century composer and murderer Carlo Gesualdo.

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The Marian Consort perform Breaking the Rules

“Would you be interested in writing a narrative for Beethoven to accompany the series?” Krysia asks.

I hesitate. One of the reasons I hadn’t considered writing about Beethoven is that in some ways it felt too personal. The one thing everyone knows about Beethoven is that he was deaf. It would be impossible to write a piece without tackling his hearing loss, and that would mean looking at my own journey full in the face. I wasn’t sure I was ready for it.

For a start, my hearing loss wasn’t common knowledge. I was careful who I told at first. I had always been complimented by other musicians on my intonation, and it was a source of pride. I was desperate to hang on to that skill and mostly, so far, I have learned to adapt, making good use of my left ear.

soprano Clare Norburn.


Challenge … soprano Clare Norburn. Photograph: Robert Piwko

Practising on my own is easy. Working with other musicians – for me the true joy of being a musician – is more challenging. It’s because you hear both inwardly and outwardly when you work with others. In your inner ear you are loudest of all, and when half of the source of your information from the outside world (about how to blend, tune and balance) is by degrees cut off, it’s hard.

But mostly it’s about fear – of what others will think. And this is an experience that I clearly share with Beethoven, although his deafness was so much more devastating than mine. And his response to deafness is simply extraordinary – an inspiration.

It was in summer 1801, when he was 30, that Beethoven first admitted in a letter to his increasing deafness. A year later came his “dark night of the soul” moment. Beethoven suffered not only from increasing deafness but from what specialists think may have been hyperacusis – a rare condition where pain is caused by loud noises, accompanied by hearing loss. His physician suggested he move from the noise of the city to give his ears a rest. So the composer went to Heiligenstadt, a village now on the outskirts of Vienna. There he penned his Heiligenstadt Testament, in which he wrote frankly about the effect of his increasing deafness. He admitted how isolated he felt, how he had withdrawn from society because he could not hear, and how, as Vienna’s foremost pianist and composer, he could not admit to his deafness.

He admitted to considering suicide. “Only my art, that is all that held me back,” he wrote. And from that moment of true despair came an extraordinary hope, an artistic commitment: “It was impossible for me to leave this world until I had brought forth everything that was within me.”

This really resonated with me. As I have come to terms with my hearing loss, it too has ultimately been a call to action. Today suddenly has such potency. Who knows what I will be able to hear tomorrow? I must write, must sing, now. No more putting things that matter on hold for an uncertain future.

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The Dante Quartet perform Beethoven’s String Quartet No. 16

So I said yes to Krysia and the Dante Quartet. And, as I wrote a funding application to Arts Council England and researched Beethoven’s life, I realised that making this a first-person narrative was an opportunity to shine a light on some of those hearing loss nuances, and to shout loud about Beethoven’s extraordinary achievements.

The words I put into Beethoven’s mouth speak for me, for all musicians who silently suffer hearing loss: I’d always been gauche at those society soirees. So imagine me now. I mean, there’s a limit to how many times I can ask people to repeat themselves without giving myself away.

“I am a musician, a composer. Hearing is all – it defines me. The pricking of my skin shows me the future. Society is unthinking. There is black and there is white. Hearing. Deafness. And nothing in between.

“But the truth is sometimes grey. I have not lost my critical faculties overnight. I can still hear when the tenor is flat, when the horn comes in a beat late.

“Yet I fear that the great and good of Vienna will think: poor Beethoven. He has lost his edge.”

The extraordinary thing about Beethoven’s hearing loss journey is that he found a way forward at every stage. Once he accepted his deafness at Heiligenstadt, it was no longer a source of shame, and he was open about it from then onwards. Even for the last 10 years of his life, when he could hear nothing, he kept composing. Many people will know the story of his conducting what seems to be an orchestra in his head at the premiere of his 9th Symphony. Eyes still shut, he had to be stopped and shown the smiling musicians, the appreciative audience applauding.

He had clearly found a way of hearing in an inner soundscape, which gave me an idea for a way into my series of six concert-plays for the Beethoven Quartet Journey. Dante are the string quartet Beethoven hears in his head. My Beethoven explains this to the audience: The music in my head. It’s flawless. Perfectly in tune. Each articulation lifted clean off the page.

David Timson as Beethoven in Clare Norburn’s Beethoven Quartet Journey.


David Timson as Beethoven in Clare Norburn’s Beethoven Quartet Journey. Photograph: Nick Harries

“My very own imaginary quartet … they play newly minted movements perfectly.

“And they are blessedly silent. None of that moaning that my music is unplayable!

The narrative is about much more than Beethoven’s hearing loss. Writing six concert-plays means a big canvas, and I wanted to balance the script to cover both the man and his music. One of the most enjoyable aspects of the collaboration with the quartet has been finding ways to provide an accessible and lively narrative, to explain what Beethoven does musically in a way that makes the works understandable for non-musicians, but also brings insights even for those who know the quartets well.

Ultimately, I learn from Beethoven that I am lucky. He shows me that hearing loss in one ear is nothing, even for a musician. “Find your own way,” he tells me. “And keep finding it. The time is not tomorrow. The time for action is now.”

I worried about working in psychiatry but one patient taught me how to listen

In medicine, psychiatry isn’t seen as glamorous. As a student and while training, you fight with your colleagues for the sexy jobs in cardiology, intensive care or on the frontline. When the crash call goes off, it’s dramatic; chest compressions, ventilation, trying to be the hero you see depicted on television. A job in psychiatry wasn’t my first choice, if there was a crisis, what would I do? Come running with my pen and notebook? Not exactly Oscar-winning stuff.

I had my reservations as I was about to embark on 91 days as a doctor in an adult inpatient psychiatric unit.

My first patient was a middle-aged woman with chronic depression and schizophrenia. Sandra* greeted me with a look of suspicion. Abused as a child, she had lived on the streets for most of her adult life, during which time she’d been through harrowing experiences. My first task was to take bloods from her. With every attempt over the next four months, I was met with the resistance of a combat warrior.

In my interactions with patients I wondered whether I was talking a different language. I had never been rejected by so many patients so much – the common answer to most of my questions being met with a firm “No!”.

After weeks of failing at any kind of meaningful interaction with patients, I decided to change tack. I stopped being the doctor in the white coat and softened my somewhat rigid attitude. Rather than judging their resistance towards me I decided to dig beneath their exterior. Connecting with my patients on an even playing field was going to be my biggest asset – but more importantly it was going to change my understanding. With Sandra, meanwhile, I had to earn her trust. Slowly, over the weeks, I learned more about what made her the person she was and the experiences that had shaped her life. She was letting me into her world, and with time she would give me her arm to take those bloods.

At first I was perhaps too naïve. I soon began to realise that if a patient was suffering from a manic episode and running around the ward naked, it wasn’t funny, but undignified. Psychotic symptoms were no longer just a list I had memorised for my medical finals exams, but instead a detachment from reality which gave patients the powers to feel like a God – indestructible. They would jump out of a window because they believed they were a superhero. I was fighting to keep them alive and protect them from the dangers of the outside world – imaginary wings will not make you fly. They will bring you crashing down to earth, hard and fast.

I started to see beyond patients’ bizarre delusions, wild disinhibition and somewhat entertaining personalities. Instead what I saw in front of me were people whose lives were consumed by the cruel fate of mental health problems. I was seeing how such a distressing illness could leave them as an empty shadow of their former self. Disabled by these crippling illnesses, their vulnerability and risk put their lives in my hands more than ever.

One day on the ward, my bleep (or, technically, in this setting, a personal protection alarm) began sounding like a siren to draw my attention to an urgent incident. Sandra lay slumped with blood pouring out from her wrists. Self harm and suicide is talked about almost too readily in the news. Seeing it in front of you is a whole different ball game.

A lone junior medic in a psychiatric hospital, I was the most senior (year two out of medical school) and experienced medical doctor. I longed for a team to come running to my aid – as is the norm in a hospital when those alarms sound. With little equipment and assistance we were able to stabilise her and wait for the bleeding to stop. Although Sandra’s wounds in time would heal, her psychological scars remained etched even deeper.

People like Sandra have taught me a lot about myself. I’m walking out with invaluable experience.

In its own right, psychiatry is a complex integration of theories and experience. No physical test will give you an explanation for the patient in front of you. Maybe that’s why the rest of the medical profession remains baffled – as a cohort we like to work with numbers and hard evidence. Instead, with mental health you must talk, listen and observe – skills that take years to acquire.

*Not her real name and some details have been changed

  • In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

If you would like to contribute to our Blood, sweat and tears series about memorable moments in a healthcare career, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

I worried about working in psychiatry but one patient taught me how to listen

In medicine, psychiatry isn’t seen as glamorous. As a student and while training, you fight with your colleagues for the sexy jobs in cardiology, intensive care or on the frontline. When the crash call goes off, it’s dramatic; chest compressions, ventilation, trying to be the hero you see depicted on television. A job in psychiatry wasn’t my first choice, if there was a crisis, what would I do? Come running with my pen and notebook? Not exactly Oscar-winning stuff.

I had my reservations as I was about to embark on 91 days as a doctor in an adult inpatient psychiatric unit.

My first patient was a middle-aged woman with chronic depression and schizophrenia. Sandra* greeted me with a look of suspicion. Abused as a child, she had lived on the streets for most of her adult life, during which time she’d been through harrowing experiences. My first task was to take bloods from her. With every attempt over the next four months, I was met with the resistance of a combat warrior.

In my interactions with patients I wondered whether I was talking a different language. I had never been rejected by so many patients so much – the common answer to most of my questions being met with a firm “No!”.

After weeks of failing at any kind of meaningful interaction with patients, I decided to change tack. I stopped being the doctor in the white coat and softened my somewhat rigid attitude. Rather than judging their resistance towards me I decided to dig beneath their exterior. Connecting with my patients on an even playing field was going to be my biggest asset – but more importantly it was going to change my understanding. With Sandra, meanwhile, I had to earn her trust. Slowly, over the weeks, I learned more about what made her the person she was and the experiences that had shaped her life. She was letting me into her world, and with time she would give me her arm to take those bloods.

At first I was perhaps too naïve. I soon began to realise that if a patient was suffering from a manic episode and running around the ward naked, it wasn’t funny, but undignified. Psychotic symptoms were no longer just a list I had memorised for my medical finals exams, but instead a detachment from reality which gave patients the powers to feel like a God – indestructible. They would jump out of a window because they believed they were a superhero. I was fighting to keep them alive and protect them from the dangers of the outside world – imaginary wings will not make you fly. They will bring you crashing down to earth, hard and fast.

I started to see beyond patients’ bizarre delusions, wild disinhibition and somewhat entertaining personalities. Instead what I saw in front of me were people whose lives were consumed by the cruel fate of mental health problems. I was seeing how such a distressing illness could leave them as an empty shadow of their former self. Disabled by these crippling illnesses, their vulnerability and risk put their lives in my hands more than ever.

One day on the ward, my bleep (or, technically, in this setting, a personal protection alarm) began sounding like a siren to draw my attention to an urgent incident. Sandra lay slumped with blood pouring out from her wrists. Self harm and suicide is talked about almost too readily in the news. Seeing it in front of you is a whole different ball game.

A lone junior medic in a psychiatric hospital, I was the most senior (year two out of medical school) and experienced medical doctor. I longed for a team to come running to my aid – as is the norm in a hospital when those alarms sound. With little equipment and assistance we were able to stabilise her and wait for the bleeding to stop. Although Sandra’s wounds in time would heal, her psychological scars remained etched even deeper.

People like Sandra have taught me a lot about myself. I’m walking out with invaluable experience.

In its own right, psychiatry is a complex integration of theories and experience. No physical test will give you an explanation for the patient in front of you. Maybe that’s why the rest of the medical profession remains baffled – as a cohort we like to work with numbers and hard evidence. Instead, with mental health you must talk, listen and observe – skills that take years to acquire.

*Not her real name and some details have been changed

  • In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Hotline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Hotlines in other countries can be found here

If you would like to contribute to our Blood, sweat and tears series about memorable moments in a healthcare career, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.

Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.

We need to open up about mental health in the workplace | Sue Baker

Looking after the wellbeing of employees benefits everyone – no matter your role, seniority, and whether you have a mental health problem, or not.

Working with employers over the past six years means we have a good indication of what works to ensure a mentally healthy workplace. Those elements are incorporated into the Time to Change employer pledge, which gives organisations the opportunity to demonstrate their commitment to opening up the conversation about mental health. More than 500 organisations have made that commitment.

There are multiple things employers can do to create a more open working environment. Senior leaders have a pivotal role to play in leading by example – being open about their own mental health experiences sends the strong message that this isn’t a sign of weakness and doesn’t limit your ambition or aspiration. Employees at all levels talking honestly and openly about their experiences has contributed hugely to a cultural shift in how we think about the topic.

When employees feel their work is meaningful and they are valued and supported, they tend to have higher wellbeing levels. We often talk about a three-pronged approach that employers can adopt: promoting wellbeing for all staff; tackling the causes of work-related mental health problems; and supporting staff who are experiencing mental health problems.

We’ve made a conscious effort in recent years to target male-dominated workplaces, such as construction. Our research shows that men still don’t consider mental health relevant to them. Men try to be self-sufficient, keeping problems to themselves. But mental health problems don’t discriminate – they can affect anyone.

Many of the biggest UK construction firms have signed our pledge, and they tell us that for them it has been crucial to have people “on the ground” in the form of employee champions who challenge workplace stigma, normalise conversations about mental health and encourage those who need help to feel comfortable asking for it.

With the right support from those around them, people with mental health problems can recover and have equal opportunities in all areas of life – including work.

Sue Baker is director of Time to Change, the anti-stigma Movement run by charities Mind and Rethink Mental Illness.

E-cigarette companies fined over false claims about toxic chemicals

Australia’s competition regulator has become the first in the world to successfully take legal action against e-cigarette companies for making false and misleading claims about the carcinogens in their products.

Federal court Justice John Gilmour ordered three online e-cigarette retailers – The Joystick Company Pty Ltd, Social-Lites Pty Ltd and Elusion Australia Ltd – and their individual CEOs and directors to pay penalties for breaching consumer law.

In separate proceedings the court found each of the companies had claimed their products did not contain harmful carcinogens and toxins, when this was not the case. It also found that the directors of Joystick and Elusion, and the CEO of Social-Lites, were knowingly involved in this deception.

Joystick and Social-Lites have been ordered to pay a penalty of $ 50,000, while the company heads have been ordered to pay $ 10,000. Elusion has been ordered to pay $ 40,000 and its director $ 15,000.

All three retailers admitted the conduct alleged by the ACCC and consented to the amounts of the penalties.

According to the case brought by the Australian Competition and Consumer Commission (ACCC), statements on the company websites led consumers to believe they would not be exposed to the harmful chemicals found in ordinary cigarettes.

However independent testing commissioned by the ACCC identified the presence of carcinogens and toxic chemicals, such as formaldehyde, acetaldehyde and acrolein in the products of Joystick, Social-Lites and Elusion, as well as acetone in Social-Lites’ products.

Formaldehyde is classified by the World Health Organisation International Agency for Research on Cancer as a Group 1A carcinogen, meaning it causes cancer, while acetaldehyde is classified as possibly carcinogenic. Acrolein is classified as a toxic chemical.

Dr Becky Freeman, a tobacco control researcher with the University of Sydney’s school of public health, said some consumers thought e-cigarette companies were “small artisan companies interested in improving health” when in fact most were owned by big tobacco.

Many advertisements for e-cigarettes and related products claimed they were less toxic and therefore less harmful than tobacco, she said. “But I’d challenge you to find something that isn’t less toxic than tobacco,” Freeman said. “We have no long-term data on e-cigarettes to show that they’ve help people quit for good or that they’re safe.”

The federal court ruling was “enormously significant”, said Simon Chapman, an emeritus professor of public health. He was aware that other complaints about e-cigarette advertising have been made to the ACCC. “These are by no means isolated examples,” Chapman said.

“Tobacco companies want to walk on both sides of the street. They try to argue that e-cigarettes are simply an ordinary consumer product and not a therapeutic device and therefore shouldn’t be subject to the same regulations, yet they often make statements that these things are excellent ways of quitting.”

He said it was “insulting to science” to claim the products were harmless or safe given the lack of evidence about long-term effects.

“Of course they don’t have all the products of combustion that tobacco products have, as they are vaporised and not burned. So while they’re likely to be less harmful, we do not yet know the magnitude of their harm, we just have no accurate way of estimating that yet,” said Chapman.

The ACCC’s acting chair, Delia Rickard, said businesses, including those online, must ensure they provide accurate information to customers and have a reasonable basis for making any claims. “This is particularly important for products that may cause harm to the health of consumers,” she said.

‘I don’t know who I am without it’: the truth about long-term antidepressant use

Sarah never planned to take antidepressants for 14 years. Three years after she began taking them, when she was 21, she went to her GP and asked to stop: 20mg of Seroxat a day had helped her live with anxiety and panic attacks, but she began to feel uncomfortable about being on medication all the time. Her doctor advised her to taper down her medication carefully.

At once, “I was a mess,” she says. “I thought I was losing my mind. My appetite completely went. I lost the best part of two stone. I was anxious constantly. My mouth was dry. It was difficult to sit and be calm.” She became withdrawn, refusing to see friends, and remembers asking her mother to get her a couple of boxes of paracetamol, thinking, “I’m going to have to take all these tablets, because I can’t live like this.”

Sarah’s doctor encouraged her to go back up to 20mg. “Within a week, I was much better. I feel anger when I look back. That wasn’t me relapsing, that was withdrawal. But I was so unwell, I didn’t stop to think, ‘I’ve never had this before.’ I truly thought it was me. Now the only reason I am on the drug is because I am dependent upon it. And that is not good enough.”

Prescriptions of SSRIs (selective serotonin reuptake inhibitors), the most common type of antidepressant, have doubled in the past decade. There are now more than 70m prescriptions dispensed in the UK in a year, the “greatest rise” of any drug in the last year, according to NHS research. But while the side-effects of starting and then withdrawing from these drugs are reasonably well known (the patient information leaflet accompanying the SSRI Seroxat is six pages long), there is very little research into the long-term effects of using antidepressants.

Last year, an all-party parliamentary group began hearing evidence as to whether there is a link between a measurable rise in mental health disability claims – 103% between 1995 and 2014 – and that in antidepressant prescriptions. (Claims for other conditions fell by 35% in the same period.) “We need to have a serious rethink about current levels of prescribing, because it may well be that the drugs are in fact contributing to the disability burden,” Dr Joanna Moncrieff, a consultant psychiatrist and senior lecturer at University College London, told the committee.

Reports both anecdotal and clinical have included side-effects such as constant pain, an altered sense of smell, taste or hearing, visual problems, burning hands and feet; food or drug intolerances and akathisia (the medical term for a deep inner restlessness). When a patient begins tapering down their dosage, these effects are generally ascribed to the drug leaving their system; if it is long after withdrawal is supposed to be over, however, patients are often disbelieved (according to the drug companies, withdrawal should take just two weeks for most people, though they acknowledge that for some it can be months).

Professor David Healy, director of the department of psychological medicine at Cardiff University and author of 22 books on psychopharmacology, believes that antidepressants are overprescribed. “If you go into your average doctor – if you’ve been off the drug for half a year or more – and you complain [of a range of symptoms] and say, ‘I think it’s caused by this pill I was on’, he or she would say, ‘It’s been out of your body for months. You’re neurotic, you’re depressed. All we need to do is put you on another pill.’”

GPs, Healy says, are “relying on your word, and if it’s a choice between believing what you say and relying on what drug companies say to them, they [tend to] believe the drug companies”. Healy, who has been a consultant for, and expert witness against, most of the major pharmaceutical companies, has long argued that long-term side-effects are routinely ignored or misunderstood.

But many experts believe these drugs do more good than harm. “Most of the people I see who have moderate to severe depression benefit from them,” says Daniel Smith, a professor of psychiatry and researcher into bipolar disorder at the University of Glasgow. For some, medication can be no less than “transformative. It can get them through a really critical period of their life.”

However, when it comes to long-term impact, especially after a person stops taking SSRIs, Smith says it can be hard to work out which symptoms relate to the drug use and which to the underlying conditions. “There’s obviously an issue of cause and effect. How can we be certain the SSRI caused it? Depression affects libido and sexual interest. How much [of the reported effects] is depression and/or anxiety symptoms coming back?”

A Seroxat box and pills


By 2003, worldwide sales of Seroxat, manufactured by GlaxoSmithKline, were worth £2.7bn. Photograph: Alamy

SSRIs have been around for more than 40 years, but grew in popularity in the late 1980s and 90s after pharmaceutical company Eli Lilly launched fluoxetine, otherwise known as Prozac. Time magazine put the drug on its cover twice, asking, “Is Freud finished?” and describing SSRIs as “mental health’s greatest success story”. In 2001, a landmark report on a clinical trial into paroxetine (sold as Seroxat in North America and Paxil in the UK), called Study 329, concluded that it demonstrated “remarkable efficacy and safety”. Study 329 led directly to a massive increase in prescriptions: by 2003, worldwide sales of Seroxat (manufactured by GlaxoSmithKline) were worth £2.7bn.

But concerns were raised about the study –the US food and drug administration (FDA) officer who reviewed the data disagreed with the findings, calling it a failed trial – and in 2015 the British Medical Journal published a re-evaluation. Seven authors went through as many of the thousands of individual case reports as they could, and found not only that “the efficacy of paroxetine… was not statistically or clinically different from placebo”, but that “there were clinically significant increases in harms, including suicidal ideation and behaviour”. The original study reported 265 adverse reactions; the BMJ found 481. The re-evaluation also found that psychiatric responses were grouped together with “dizziness” and “headaches”, rather than given their own category. In 2003, the UK banned the use of Seroxat by anyone under 18; and in 2004 the FDA required a “black box warning” on all antidepressants, its strictest level of patient warning.

“Patient safety is our number one priority,” a GlaxoSmithKline (GSK) spokesperson tells me. “We believe we acted responsibly in researching paroxetine, monitoring its safety once it was approved and updating its labelling as new information became available.”


It’s more reliably predictable that they’re going to get rid of sexual function than get rid of depression

Many SSRI users report blunted emotions, even long after they have ceased taking pills, and an impact on sexual function. “They should be called anti-sex drugs rather than antidepressant drugs,” says Jon Jureidini, a child psychiatrist of 30 years’ standing, a professor of psychiatry and paediatrics at the University of Adelaide and co-author of the BMJ study, “It’s more reliably predictable that they’re going to get rid of sexual function than it is that they’re going to get rid of depression.” Again, some people find this persists long after they cease taking the drug. One person I spoke to, Kevin, had taken Prozac for six months when he was 18; now 38, he hasn’t had an erection since.

Last September, Healy and colleagues published a further examination of the data gathered for Study 329. This data followed the trial participants for six months after they started taking paroxetine (the “continuation phase”) and while they were tapered off it. GSK, which in 2004 published a clinical study report, had argued that “the long-term safety profile of paroxetine in adolescents appears similar to that reported following short-term dosing”. Healy and co, however, concluded that the “continuation phase did not offer support for longer-term efficacy”. More alarmingly, they found that the taper phase, when patients were being taken off the drugs, was the riskiest of all, showing a “higher proportion of severe adverse events per week of exposure”. This, they said, opens up the risk of a “prescribing cascade”, whereby drug side-effects are thought to be symptoms, so are treated with further drugs, causing further side-effects and further prescriptions – thus increasing the risk of long-term prescription drug-dependency.

In October, the British Medical Association published its response to a two-year fact-finding exercise into long-term use of psychoactive drugs. It noted that while benzodiazepines, z-drugs, opioid and antidepressants are “a key therapeutic tool”, that their use can “often lead to a patient becoming dependent or suffering withdrawal symptoms… the evidence and insight presented to us by many charity and support groups… shows us that the ‘lived experience’ of patients using these medications is too often associated with devastating health and social harms”; it was therefore, the report concluded, a “significant public health issue”.

The BMA made three key recommendations: first, and most urgently, that the UK government establish a 24-hour helpline for prescribed drug dependence; second, that it establish well-resourced specialist support units; and third, that there should be clear guidance on prescription, tapering and withdrawal management (they found the current approach to antidepressants, in particular, to be inconsistent: too many patients were suffering “significant harm”). There are also increasingly urgent calls for studies into long-term effects that are not funded by drug companies, because, Moncrieff says: “We don’t have very much data. This research is really important, but hasn’t been done. It’s a massive blind spot. It’s extraordinary – or maybe, given the pressures and interests at work, not extraordinary at all – that it hasn’t been filled.”

In March this year, members of the BMA, along with MPs and researchers from Roehampton University, went to parliament to lobby Public Health England, armed with research estimating that there are 770,000 long-term users of antidepressants in England alone, at a cost of £44m to the NHS per year (a figure that does not account for the cost of GP appointments, or the impact of side-effects, withdrawal effects and disability payments).

“I think you have to adopt a very conservative approach,” says psychiatrist Jon Jureidini. “These are brain-altering drugs, and our overall experience with brain-altering drugs of all kinds is that they tend to have a detrimental effect on some proportion of people who take them long term. All we know about the benefits is from short-term symptom-reduction studies. The careful prescriber needs to say, ‘Well, in balancing the likely benefits and harms, I need to be very cautious about how much benefit I’m expecting, and I need to be very generous about the possibility that the harms might be more than they appear to be.’”

Quite a few long-term users, such as those I spoke to below (and who wished to be anonymous), would agree.

‘Tapering off is the hardest thing I’ve ever done’: Sarah, 32; has taken Seroxat for 14 years

I was prescribed Seroxat when I was 18, the year I started university. I grew up with a disabled sister, so things at home were very stressful, and I had a history of anxiety and panic attacks. I had counselling, but the problems persisted, so I went back to the GP. I don’t remember everything that was said, but there was no conversation about side-effects.

Within the first two weeks of starting Seroxat, I remember I was sitting in the front room watching TV when out of nowhere I had this intense feeling of heat, like an electric shock. It started in my hands, went all the way up my arms and through to my head.

The GP said it was probably just my body getting used to the drug. And after a few weeks the weird sensations did ease off. I had a fabulous time at university. I still had panic attacks, and there were certain situations I would avoid – as I still do – so it wasn’t a wonder drug, but there were no major problems.

But in 2006 I tried to come off it. There were a couple of Panorama documentaries about the side-effects and I was starting to become concerned. The GP said, “That’s fine, but do it gradually, over three weeks.”


I thought I was losing my mind. I was going to work, but it was difficult to get through the day. My mouth was so dry

I immediately became incredibly unwell. I thought I was losing my mind. I was going to work, but it was difficult to get through the day. My mouth was so dry, I was constantly drinking water. I had bizarre thoughts – not hallucinations – that were frightening or distressing. I had a strong sense of detachment from reality.

Eventually, the doctor said, “Look, you coming off is obviously not working: we need to get you back to 20mg.” Within a week I was much better.

A few years later, when I realised my mental health was getting worse, even though I was on the medication, I started to do some research, reading case studies about withdrawal. I find it so offensive when a GP says, “This is who you are.” I didn’t have these symptoms 10 years ago. I didn’t have this sense of detachment. I saw various psychiatrists. They just kept saying, “The drug is safe, you need to be on it.” A couple of others told me the reason I was having these problems was because I wasn’t taking enough. Another said, “If you were diabetic, you’d take insulin and you wouldn’t have an issue. Why are you so bothered about taking this drug?”

I’ve been on it since I was 18, so I don’t know who I am without it, as an adult. Who knows? I might have all kinds of problems, but I need to know I’ve tried. Tapering off is the hardest thing I’ve ever done. It’s taken me three years just to get from 20mg to 5mg. I’m no longer with my partner – we were together for six years. I believe Seroxat has played a part: it affected my moods, it made my anxiety worse and, by necessity, I’ve had to be selfish, really. I don’t want to say all my problems are to do with Seroxat, because they’re not. But I do believe that it has caused me harm.

‘I don’t have much of an interest in interacting romantically or physically with the opposite sex’: Jake, 24; took SSRIs for eight years

I had been dealing with symptoms of OCD and anxiety for a lot of my childhood. It’s in my family, affecting two siblings and one parent. I was prescribed Zoloft when I was 12; I took a variety of SSRIs, Zoloft to Prozac to Lexapro, and then two others, for eight years.

Did they help? You know, I can’t really tell you, because I got through school. I got high marks, I had a lot of friends. So, in that sense, they must have helped. That’s the thing: for people with major depression, it’s easy to say, this has a measurable effect. But I kept taking them just because that’s what I’ve always done.

I went to university right out of school. I did very poorly. I had a bit of a breakdown, isolating myself, not sleeping. I was still on medication. I came home and enrolled at a community college. That was my worst period – I was very depressed. And I started to think, “I’ve been on these medications a long time. I’m not doing well – why not get off them?” I don’t recommend this at all to anyone, but I stopped going to a psychiatrist and took myself off.

prozac


Prozac. Photograph: Getty Images

For months I had trouble sleeping. I was jittery. I had brain zaps. My anxiety was pretty ramped up. I would feel numbness in my extremities – generally my arms. My psychiatrist told me these were just normal withdrawal symptoms, and they’d be gone in four to six weeks: “Anything you feel beyond that is your anxiety and depression returning.” Basically, if you still feel anything beyond this window that the medical community has established, it’s all in your head.

Eventually I went back to school full-time, and I remember doing OK, feeling somewhat better.

I’ve now been drug-free for four years. What’s lasted are the sexual side-effects. They were definitely worse in withdrawal than they had been on the drug, even though I didn’t really realise or understand it at the time, primarily because I started to take SSRIs at 12. While my brother took the same medicine over the same period and had a normal sexual life, I had a lack of sexual interest. I had erections, and I have regularly masturbated my entire life. But I don’t have much of an interest in interacting romantically or physically with the opposite sex.

I didn’t even start thinking about sex until a couple of years ago. It’s almost like I woke up one day and thought, “OK!” I started getting these windows – days or weeks – when normal sexual feelings would appear. But they’re new to me and I don’t know what to do about them. And because I don’t know what to do, I get anxious, and the anxiety kills any feeling – and then I’m anxious because I’ve lost all my feeling.

Online, I’ve come across a big asexual community. Some also took antidepressants; I think there are a lot of people like me out there. I’d like to think that if I keep going to counselling and sleeping and eating properly, I can rectify these things.

In the end, it’s about pros and cons. If you’re lying in bed and can’t get up, is it better to function? If it was up to me, I’d say that, barring extreme circumstances, nobody under 18 should be prescribed these things. Your brain develops around them. Drug companies should be thinking of the long-term effect on people who can’t even consent.

‘If I missed a dose, I’d get shocks down the side of my body’: Chris, 43; has been taking Seroxat for 26 years

I was originally prescribed Seroxat for mild anxiety about my GCSEs. It was 1991, about the time GlaxoSmithKline released Seroxat. I was one of the first people to be given it.

I was prescribed 20mg, the basic dose, to start with. It helped me: I got through school, I went to uni, I went to work. But I had side-effects from the off: profuse sweating, low libido. I’m quite a placid person, but I became aggressive. I never suffered, in the beginning, with the suicidal thoughts that people talk about now, but what I did notice was that if I missed a dose – especially after eight years of taking it – I’d get shocks down the side of my body. I’d be nauseous, my limbs would become weak. I’d be in a constant state of confusion and was very impatient. I couldn’t communicate well with people. I said this to the doctor, and he said, “We’ll up the dose to 40mg.” That was 1998.


I tried to go back to 20mg, but my words became slurry, so the doctor put me back up to 60mg

The 10 years after that weren’t too bad. I managed to work, as a sales rep, for 18-20 years. But by 2012, by which time I was up to 60mg, I had tried on numerous occasions to withdraw. I tried to go back to 20mg, but my words became slurry, so the doctor put me back up to 60mg.

By the time I was 38, even that wasn’t enough. I tried to take my life. The doctor wouldn’t prescribe a higher dose. I couldn’t do my job, I couldn’t concentrate, I couldn’t drive. A psychiatrist once said to me that coming off Seroxat is harder than quitting heroin. That really hit home.

I have now been unable to work for four years. I’m still seeing a psychiatrist. I’ve also been diagnosed with fibromyalgia: constant tiredness, aches in the neck, and in the lower back and lower limbs. I’m 43 and still live with my mum and dad.

I also have no libido. Since the age of 30, I have had no feelings in that regard whatsoever. I have had relationships, but they’ve all failed. I haven’t been in a relationship for 10 years, which is a long time to go without sex, but I just don’t get the urge.

I don’t really have emotions, to tell you the truth. The drug takes your emotions away. I’m sort of existing, not living.

And when the drugs do work…

‘I wanted to be able to feel good when good things were happening, bad when bad things were happening’

By Simon Hattenstone

I suppose I was a depression snob. A purist. Why should I take antidepressants? Yes, there was something rubbish about crying all the time, not functioning, being unable to answer simple questions because of the fug in my head. But, hey, at least I was true to myself.

My depression went back to my late teens. I didn’t like to think of myself as depressive, because depressives were losers. And I didn’t think I fitted the bill: I was pretty funny and able, and I could get girlfriends. I guess most depressives don’t think they fit the bill.

It might have been genetic. My dad had paralysing depression, and so did his father. As a young boy, I’d spent three years off school with encephalitis – an inflammation of the brain that is often fatal. Survivors are often left with depression.

I remember as a teenager being on holiday in Greece with friends. The weather was gorgeous, and I thought, “Why can’t it piss down, because then at least I’d have a reason to feel this way?”

That is what I always craved – objectivity. To be able to feel good when good things were happening, to feel bad when bad things were happening. I hated the fact that my feelings rarely correlated to what was going on in my outer world.

In my 20s, I got by. I held down a good job, fell in love, had kids, made friends, had a pretty good life. But things came to a head when my best friend killed herself. I’d find myself weaving in between traffic wondering what the impact would be like. I took a period off work and gratefully accepted my Prozac prescription.

Things had changed since I first rejected them. Prozac looked cool (lovely green-and-white pills) and rock bands wrote great songs about it (even if REM’s Shiny Happy People was supposed to be dystopic). After telling people I was off work with depression, I ended up feeling like a priest at confessional. It turned out that virtually everybody I knew was a depressive and pilling their way out of it; now it was “our secret”.


I would try to come off the pills and felt rubbish again – not more rubbish than before, but the same. So I returned

Initially, Prozac made me feel sick. And then magically, after a couple of weeks, I felt lighter, as if something had been lifted. I could hear questions properly, answer logically, enjoy a sunny day.

My partner said I was transformed. Occasionally, I would try to come off the pills and felt rubbish again – not more rubbish than I had before, but the same. So I returned, and after a while, I thought, “What’s the point of even thinking about coming off the pills if they make life work for me?”

There are times now when I wonder if I weep and fret and withdraw too much, and whether I’m becoming immune to the Prozac. But on balance I think not, because life is still so much better than it was.

If Prozac was no longer working for me, would I stop taking it? Probably. Would I stop taking antidepressants full stop? I doubt it. I’d simply look for another super pill.

Are you a long-term user of antidepressants? Tell us about your experiences

  • If you are affected by the issues raised in this piece, contact the Samaritans here.

Are you a long-term user of antidepressants? Tell us about your experiences

In the past decade there has been a doubling in the number of prescriptions written for selective serotonin reuptake inhibitors (SRRIs) – the most common antidepressant. NHS research shows there are now more than 70m prescriptions dispensed in the UK in a year, the “greatest rise” of any drug in the last year.

But while the short-term side effects of taking this medication are well-known, there has been less exploration into the longer-term impact of them. In an article for Guardian Weekend magazine, Aida Edemariam spoke to people who had been taking the drugs for many years. She found that many SSRI users report blunted emotions and an impact on sexual function, with the effect lasting long after people have stopped taking pills.

Those attempting to come off these drugs also face withdrawal symptoms. This can include feeling heightened anxiety or depression, with some going back onto the drugs believing their mental health problems have returned.

That is not to say that these drugs are not helpful. They can prove life-saving in terms of helping them cope and live with mental health problems. The Guardian’s Simon Hattenstone said: “If Prozac was no longer working for me, would I stop taking it? Probably. Would I stop taking antidepressants full stop? I doubt it. I’d simply look for another super pill.”

Share your experiences

We want to hear from our readers about long-term antidepressant use. Have you been on medication for a long time and struggled to come off it? Do you want to? Do you feel these drugs are overprescribed? Should more be done to warn patients about long-term side effects before they take them? Or do you feel you would never have coped without them? Share your stories.

What can sci-fi teach us about the future of health? | Ara Darzi

In State of Wonder, the American writer Ann Patchett imagined the discovery made by a charismatic but despotic professor, Dr Annick Swenson, who travelled deep into the Amazon basin and found a tribe in which the women went on bearing children until the end of their lives. While their bodies aged as normal, their reproductive systems stayed daisy-fresh.

Membership Event: Ann Patchett in conversation

“This is the end of IVF. No more expense, no more shots that don’t work, no more donor eggs and surrogates. This is ovum in perpetuity, menstruation everlasting …”

A miracle fertility drug, taken in this case from the bark of an endemic jungle tree, is one of science’s most enduring dreams. Miniature robots designed to prowl the bloodstream when injected through a vein seeking out and destroying undesirable micro-organisms is another. And there are many darker visions of monsters, plagues and organ trading.

Dreaming is what we should be doing, in science, in medicine and in life. If we do not imagine the future, how can we invent (or prevent) it? That is why I welcome what is described as the world’s largest health science-fiction prize, which seeks to unlock an array of hypothetical futures.

“Writing the Future” is open to writers of any nationality who are asked to submit a story of up to 3,000 words about the state of health and healthcare in the UK in the year 2100. The winner, to be announced in October, will take home £10,000.

As director of the Institute of Global Health Innovation at Imperial College London, I spend a lot of time debating the future of medicine. But change is hard to predict, and it doesn’t help if you spend much of your time with healthcare insiders, as I do, trying to solve the problems created in the past.

So why not ask people more familiar with conjuring dreams to help us out? The aim with this prize, for which we have provided a small sum in sponsorship, is to attract outsiders who can bring a fresh perspective with a story that displays ingenuity and insight, as well as being a cracking good read.

Thinking about the state of our health 83 years from now is vital if we are to continue delivering the best possible care. Looking back 83 years to the 1930s, the NHS was yet to be founded and penicillin existed only on Alexander Fleming’s petri dish. Of every 1,000 babies born, 63 died in infancy. Yet just 40 years later, babies were being conceived in test tubes.


The big gains are likely to come from innovations in the general purpose technologies that have transformed our world

The health industry has actually been remarkably good at innovation. Some advances have been the result of technical wizardry, such as in-vitro fertilisation, organ transplants and CT scanning for cancer. Others have transformed the outlook for whole populations, such as antibiotics, vaccination, and the contraceptive pill.

Asked to think about future innovations in health, most people might mention a new HIV vaccine, a cure for Alzheimer’s disease – or a drug to confer long-lasting fertility. These would certainly be blockbuster gains for humanity but with the rising cost and diminishing returns from drug development, there are likely to be few such silver bullets in the next decade.

The big gains are likely to come from innovations in general-purpose technologies – smartphones, computing, bio-engineering – that have already transformed our world. Until 1998 there were no online bookstores. Yet today, Amazon has 40% of the books market. Until a dozen years ago few people banked online. Today 60% do. Mobile phones may play as significant a role in healthcare in this century as the stethoscope did in the last.

So what is next? We have made astonishing progress in the last eight decades. More of us survive childbirth and infancy, our lives are longer and there is more that medicine can do to help when we are sick.

We have made enormous strides against the major killers of the past such as smallpox, tuberculosis and diphtheria. The new challenge comes from the chronic conditions that blight so many lives in the modern world – diabetes, cancer and heart disease. Here, advances in genomic medicine could help us to identify individuals at risk and allow us to intervene earlier.

Entrants for Writing the Future may have very different visions of what is to come. Social enterprise Kaleidoscope Health and Care, which conceived the prize, has its own ideas about how to encourage innovative thinking in health.

Established in 2016 by Richard Taunt, a former civil servant and director of policy at the Health Foundation thinktank, its 10 staff include clinicians and managers who have seen the problems from the inside and want to “change the conversation” by attracting talent that can see beyond the limits of budgets and hospital walls.

One way they do this is by offering envelopes containing £100 in cash to selected individuals to spend in any way they like – on coffees, a lunch, or a train ticket – as long as it is in the cause of having an unexpected conversation about health and care that they can blog about afterwards.

We need innovative thinking in healthcare now more than ever. There is substantial interest in Writing the Future from leading science fiction writers around the world. We should all expect to be excited, enlightened and entertained.

What novels reveal about our brains | Daniel Glaser

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Psychological thrillers are a great way of understanding the skewed perception of first-person consciousness

With the hotly anticipated Into The Water by Paula Hawkins out next month, the interest in psychological thrillers isn’t going away. The genre’s preoccupations are shared with neuroscience – in particular, how we process memory. But it’s not recent breakthroughs within neuroscience and psychology that make it such a rich seam for novelists.

In fact, there haven’t really been any, although much new data about the brain is available, thanks to imaging techniques, neuroscience projects and interest from venture capitalists into artificial intelligence, our basic view of it is not that different to what it was 20 years ago. Now novels offer the most realistic accounts of first-person consciousness, particularly psychological thrillers that rely on skewed perception and unreliable narrators. This style, suggesting that what we experience isn’t objective reality but rather a story we tell ourselves, is closer to the truth than most psychological theories. When we can finally explain how the brain works, perhaps scientific representations will be more accurate. But for now, the novel is the real story.

Continue reading…

Talking about feelings does not make you a snowflake | Deborah Orr

Prince Harry spoke over the weekend about the emotional cost of suppressing his grief over his mother’s death when he was 12 years old. Prince William followed up by saying that his work as an air ambulance pilot made him aware of the large number of people, mainly men, who attempt suicide. The two of them, along with the Duchess of Cambridge, have launched an awareness campaign that aims to highlight the dearth of good mental health provision in Britain.

For some, all this means is that – disappointingly – the royals have joined the “snowflake generation” of young people who are simply too sensitive to little things like “feelings”. For others, including myself, their Heads Together initiative is admirable, not least because in itself it calls attention to the ludicrously basic level at which the building of “awareness” needs to begin.

Imagine how weird it would be if this trio were sticking their necks out to raise awareness of physical health, pointing out that you don’t just carry on, yelling that it’s only a flesh wound if you’ve made a gash in your hand. Clean it, at the very least. Put on a plaster. If it won’t stop bleeding, see a doctor. These are things everyone is nowadays expected to know. Yet, not so long ago, humans had no understanding at all of the implications of leaving a physical wound untreated.

We’re not far beyond that point with “mental health”. For a start, this is a huge, catch-all term. In Harry’s case, normal emotional distress was left untreated, and festered into something more serious. And yet … expressing his distress? Having it addressed? That, in some people’s eyes, would have made Harry a snowflake. This dangerous attitude is particularly fostered in men and boys. It’s not masculine to show your emotions – though they tend to show in other ways, in anger, aggression, self-harm or depression. I daresay that in at least some of the cases to which William refers, men bottled up their distress until it became overwhelming.

Very often a “mental health problem” starts out as mere emotional distress, a natural, healthy part of life. It’s when that distress isn’t sensibly addressed that it can grow into something that can be labelled a problem. Simply being aware of one’s emotions is the first step towards regulating them. Telling a whole generation that they’re “snowflakes” for having such awareness is actually an awful thing to do.

Which is not to say that every manifestation of emotional distress should be indulged or validated. That, I think, is what makes people talk of “emotional incontinence”. There’s a tendency among some to start believing that if a view or opinion upsets them then it is wrong. On the contrary, that’s usually a sign that the distressed person has difficulty handling conflict. What’s really going on with the “snowflake generation” is that people are becoming more aware of their feelings and needs, but don’t have the knowledge or experience to understand what those reactions are telling them about themselves.

In January this year, Theresa May announced that schoolchildren will be given greater access to NHS mental health workers. She has also praised Prince Harry for helping to “smash the stigma” around mental health and reassuring people that they are “not alone”. (She’s also called a snap general election, of course, which isn’t going to help anyone’s mental health.)

But this too is evidence of the crudity of our thinking. What is actually needed is far more sophisticated emotional awareness, so that people can recognise and manage their own emotions and, just as importantly, interactions with others who may have unhealthy or abusive emotional agendas themselves.

The good news is that all this is not actually as difficult or complex as it may appear. Emotional awareness could easily be taught in schools. It should be seen as just as necessary as PE. Already people are doing amazing and cost-effective work that can have a huge impact in helping people understand and care for themselves and those around them. Last week, for instance, I took part in a conflict workshop run by youth charity Leap. Around 20 adults who had never met before became fairly emotionally intimate with each other over just a couple of hours.


Emotional awareness should be taught in schools, and seen as just as necessary as PE

Some declared they’d achieved insights that they were going to apply within their marriages. Someone who’d worked for years with the most troubled young people announced she was “blown away”. Yet the room was full of people who didn’t even know that conflict was a problem in their lives.

And that’s the thing. People soldier on, unaware they have a problem. Worse, that problem becomes familiar; it feels safe, even comfortable, because it’s what they know. It’s why people make the same mistakes again and again, abusing others or allowing themselves to be abused without even knowing this behaviour isn’t “normal”.

There’s a tendency to see the “snowflake generation” as narcissistic, demanding constant attention and validation, wrapped up in their own needs and unaware of those of others, refusing to take responsibility for their choices or mistakes, playing the victim. Yet these critics are themselves being typically narcissistic in denying that the youngsters they berate have any right to their own feelings and perceptions, let alone might need or deserve some help in untangling them.

If anything, I believe, this generation is suffering because generations before it were as narcissistic as any that ever lived. If you think that’s far-fetched, take a look at Donald Trump, elected King of the Baby Boomers.

Talking of kings, there’s not a lot that’s more narcissistic than the concept of monarchy. When the youth of that institution say there’s a problem, then you really, really know there is. And that it’s a big one.