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We need to rethink how we classify mental illness | Tamara Kayali Browne

How do we decide what emotions, thoughts and behaviours are normal, abnormal or pathological?

This is essentially what a select group of psychiatrists decide each time they revise the Diagnostic and Statistical Manual of Mental Disorders (DSM), a bible for mental health professionals worldwide.

Questions like these are unavoidable and cannot be answered by science alone. This point was famously demonstrated when homosexuality was declassified as a mental illness in the DSM in 1973 by a simple vote.

The DSM was first published by the American Psychiatric Association in 1952 to create a common language and standard criteria for the way we classify mental disorders. It’s now used around the world by clinicians, researchers, insurance and pharmaceutical companies, the legal system, health regulators and policy makers, to name a few.

Now in its fifth edition, revisions have gradually expanded the number of mental disorders, while also removing some as understanding or values change. Over the years many of these amendments have courted controversy.

These days, criticisms of the DSM are that it medicalises normal behaviour such as fidgetiness, noisiness and shyness.

Currently, three temper tantrums a week, negativity, irritability and anger would qualify a child to be labelled with disruptive mood dysregulation disorder. The label assumes first that the child is suffering from a problem, and second that the problem is pathological. Yet one may also question why it is the child who must be labelled and not the parents. For example, why do we not have a diagnosis called inability to discipline one’s child disorder?

What the “problem” is and who is judged to be the party “suffering” from it are value judgments which carry with them the cultural biases and assumptions of the individuals making those judgments. If we don’t examine value judgments properly, we risk making judgments that are discriminatory or harmful.

For example, although hysteria has now disappeared from official psychiatric diagnosis, there are elements of it present within other psychiatric diagnoses, most notably premenstrual dysphoric disorder (PMDD).

Commonly described as a more severe form of premenstrual stress (PMS), PMDD has been accused of labelling as a mental disorder normal and understandable reactions to the sort of stressful circumstances that disproportionately affect women in a modern society that still has not achieved gender equality.

In this way, psychiatric diagnosis could act as a way of brushing aside indicators of social injustices.

Likewise, sadness and changes in sleep, eating and so on can be normal and understandable reactions to loss (e.g. in the case of bereavement), not necessarily indicators of mental illness. In fact, behaviours like these can act as a positive sign that something is wrong, functioning as a catalyst for changing one’s situation for the better.

But the DSM only focuses on these “symptoms” and does not take into account the individual’s context. This in itself is a value judgment.

This is why our process of classifying mental illnesses should involve experts for whom examining value judgments is their bread and butter – philosophers. Bioethicists and philosophers of psychiatry are trained in bringing value judgments to light and analysing them in depth.

The way we classify mental illnesses also has broad implications for those diagnosed and for society – something that sociologists would be well placed to consider.

We could make good use of these experts by requiring each revision of the DSM to pass through an ethics assessment by an independent panel made up of philosophers, sociologists and ethicists.

Philosophers could identify and deliberate the value issues, sociologists could present the possible social consequences of proposed changes, and ethicists could make the complex harm/benefit analyses and ethical trade-offs that will inevitably be involved.

The panel also needs to have “teeth”, so it should have the power to veto or modify a category.

This might sound like a provocative proposal, but it is similar to the procedure we already have for scientific studies. Just as these studies must gain ethics approval before they go ahead in order to mitigate harm to participants and the community, having an ethics review panel would be an extra step of “checks and balances” for the DSM.

While those involved in making the DSM come from a variety of backgrounds – primarily psychiatrists, psychologists, social workers and clinicians – none have been primarily ethicists or philosophers.

And while some psychiatrists might have the training and experience that enables them to examine value judgments, it would be unreasonable to expect that to be the case, just as it would be unreasonable to expect ethicists and philosophers to be able to evaluate scientific judgments.

The solution I propose is based on the idea that psychiatric diagnosis should serve an ethical purpose – relieving certain forms of suffering and disease.

In light of this ethical purpose, we must do our utmost to consider value judgments that can cloud our view of “illness” and how it should be treated. I believe establishing an ethics review panel for the DSM can go a significant way towards achieving that goal.

We need to rethink how we classify mental illness | Tamara Kayali Browne

How do we decide what emotions, thoughts and behaviours are normal, abnormal or pathological?

This is essentially what a select group of psychiatrists decide each time they revise the Diagnostic and Statistical Manual of Mental Disorders (DSM), a bible for mental health professionals worldwide.

Questions like these are unavoidable and cannot be answered by science alone. This point was famously demonstrated when homosexuality was declassified as a mental illness in the DSM in 1973 by a simple vote.

The DSM was first published by the American Psychiatric Association in 1952 to create a common language and standard criteria for the way we classify mental disorders. It’s now used around the world by clinicians, researchers, insurance and pharmaceutical companies, the legal system, health regulators and policy makers, to name a few.

Now in its fifth edition, revisions have gradually expanded the number of mental disorders, while also removing some as understanding or values change. Over the years many of these amendments have courted controversy.

These days, criticisms of the DSM are that it medicalises normal behaviour such as fidgetiness, noisiness and shyness.

Currently, three temper tantrums a week, negativity, irritability and anger would qualify a child to be labelled with disruptive mood dysregulation disorder. The label assumes first that the child is suffering from a problem, and second that the problem is pathological. Yet one may also question why it is the child who must be labelled and not the parents. For example, why do we not have a diagnosis called inability to discipline one’s child disorder?

What the “problem” is and who is judged to be the party “suffering” from it are value judgments which carry with them the cultural biases and assumptions of the individuals making those judgments. If we don’t examine value judgments properly, we risk making judgments that are discriminatory or harmful.

For example, although hysteria has now disappeared from official psychiatric diagnosis, there are elements of it present within other psychiatric diagnoses, most notably premenstrual dysphoric disorder (PMDD).

Commonly described as a more severe form of premenstrual stress (PMS), PMDD has been accused of labelling as a mental disorder normal and understandable reactions to the sort of stressful circumstances that disproportionately affect women in a modern society that still has not achieved gender equality.

In this way, psychiatric diagnosis could act as a way of brushing aside indicators of social injustices.

Likewise, sadness and changes in sleep, eating and so on can be normal and understandable reactions to loss (e.g. in the case of bereavement), not necessarily indicators of mental illness. In fact, behaviours like these can act as a positive sign that something is wrong, functioning as a catalyst for changing one’s situation for the better.

But the DSM only focuses on these “symptoms” and does not take into account the individual’s context. This in itself is a value judgment.

This is why our process of classifying mental illnesses should involve experts for whom examining value judgments is their bread and butter – philosophers. Bioethicists and philosophers of psychiatry are trained in bringing value judgments to light and analysing them in depth.

The way we classify mental illnesses also has broad implications for those diagnosed and for society – something that sociologists would be well placed to consider.

We could make good use of these experts by requiring each revision of the DSM to pass through an ethics assessment by an independent panel made up of philosophers, sociologists and ethicists.

Philosophers could identify and deliberate the value issues, sociologists could present the possible social consequences of proposed changes, and ethicists could make the complex harm/benefit analyses and ethical trade-offs that will inevitably be involved.

The panel also needs to have “teeth”, so it should have the power to veto or modify a category.

This might sound like a provocative proposal, but it is similar to the procedure we already have for scientific studies. Just as these studies must gain ethics approval before they go ahead in order to mitigate harm to participants and the community, having an ethics review panel would be an extra step of “checks and balances” for the DSM.

While those involved in making the DSM come from a variety of backgrounds – primarily psychiatrists, psychologists, social workers and clinicians – none have been primarily ethicists or philosophers.

And while some psychiatrists might have the training and experience that enables them to examine value judgments, it would be unreasonable to expect that to be the case, just as it would be unreasonable to expect ethicists and philosophers to be able to evaluate scientific judgments.

The solution I propose is based on the idea that psychiatric diagnosis should serve an ethical purpose – relieving certain forms of suffering and disease.

In light of this ethical purpose, we must do our utmost to consider value judgments that can cloud our view of “illness” and how it should be treated. I believe establishing an ethics review panel for the DSM can go a significant way towards achieving that goal.

We need to rethink how we classify mental illness | Tamara Kayali Browne

How do we decide what emotions, thoughts and behaviours are normal, abnormal or pathological?

This is essentially what a select group of psychiatrists decide each time they revise the Diagnostic and Statistical Manual of Mental Disorders (DSM), a bible for mental health professionals worldwide.

Questions like these are unavoidable and cannot be answered by science alone. This point was famously demonstrated when homosexuality was declassified as a mental illness in the DSM in 1973 by a simple vote.

The DSM was first published by the American Psychiatric Association in 1952 to create a common language and standard criteria for the way we classify mental disorders. It’s now used around the world by clinicians, researchers, insurance and pharmaceutical companies, the legal system, health regulators and policy makers, to name a few.

Now in its fifth edition, revisions have gradually expanded the number of mental disorders, while also removing some as understanding or values change. Over the years many of these amendments have courted controversy.

These days, criticisms of the DSM are that it medicalises normal behaviour such as fidgetiness, noisiness and shyness.

Currently, three temper tantrums a week, negativity, irritability and anger would qualify a child to be labelled with disruptive mood dysregulation disorder. The label assumes first that the child is suffering from a problem, and second that the problem is pathological. Yet one may also question why it is the child who must be labelled and not the parents. For example, why do we not have a diagnosis called inability to discipline one’s child disorder?

What the “problem” is and who is judged to be the party “suffering” from it are value judgments which carry with them the cultural biases and assumptions of the individuals making those judgments. If we don’t examine value judgments properly, we risk making judgments that are discriminatory or harmful.

For example, although hysteria has now disappeared from official psychiatric diagnosis, there are elements of it present within other psychiatric diagnoses, most notably premenstrual dysphoric disorder (PMDD).

Commonly described as a more severe form of premenstrual stress (PMS), PMDD has been accused of labelling as a mental disorder normal and understandable reactions to the sort of stressful circumstances that disproportionately affect women in a modern society that still has not achieved gender equality.

In this way, psychiatric diagnosis could act as a way of brushing aside indicators of social injustices.

Likewise, sadness and changes in sleep, eating and so on can be normal and understandable reactions to loss (e.g. in the case of bereavement), not necessarily indicators of mental illness. In fact, behaviours like these can act as a positive sign that something is wrong, functioning as a catalyst for changing one’s situation for the better.

But the DSM only focuses on these “symptoms” and does not take into account the individual’s context. This in itself is a value judgment.

This is why our process of classifying mental illnesses should involve experts for whom examining value judgments is their bread and butter – philosophers. Bioethicists and philosophers of psychiatry are trained in bringing value judgments to light and analysing them in depth.

The way we classify mental illnesses also has broad implications for those diagnosed and for society – something that sociologists would be well placed to consider.

We could make good use of these experts by requiring each revision of the DSM to pass through an ethics assessment by an independent panel made up of philosophers, sociologists and ethicists.

Philosophers could identify and deliberate the value issues, sociologists could present the possible social consequences of proposed changes, and ethicists could make the complex harm/benefit analyses and ethical trade-offs that will inevitably be involved.

The panel also needs to have “teeth”, so it should have the power to veto or modify a category.

This might sound like a provocative proposal, but it is similar to the procedure we already have for scientific studies. Just as these studies must gain ethics approval before they go ahead in order to mitigate harm to participants and the community, having an ethics review panel would be an extra step of “checks and balances” for the DSM.

While those involved in making the DSM come from a variety of backgrounds – primarily psychiatrists, psychologists, social workers and clinicians – none have been primarily ethicists or philosophers.

And while some psychiatrists might have the training and experience that enables them to examine value judgments, it would be unreasonable to expect that to be the case, just as it would be unreasonable to expect ethicists and philosophers to be able to evaluate scientific judgments.

The solution I propose is based on the idea that psychiatric diagnosis should serve an ethical purpose – relieving certain forms of suffering and disease.

In light of this ethical purpose, we must do our utmost to consider value judgments that can cloud our view of “illness” and how it should be treated. I believe establishing an ethics review panel for the DSM can go a significant way towards achieving that goal.

We need to rethink how we classify mental illness | Tamara Kayali Browne

How do we decide what emotions, thoughts and behaviours are normal, abnormal or pathological?

This is essentially what a select group of psychiatrists decide each time they revise the Diagnostic and Statistical Manual of Mental Disorders (DSM), a bible for mental health professionals worldwide.

Questions like these are unavoidable and cannot be answered by science alone. This point was famously demonstrated when homosexuality was declassified as a mental illness in the DSM in 1973 by a simple vote.

The DSM was first published by the American Psychiatric Association in 1952 to create a common language and standard criteria for the way we classify mental disorders. It’s now used around the world by clinicians, researchers, insurance and pharmaceutical companies, the legal system, health regulators and policy makers, to name a few.

Now in its fifth edition, revisions have gradually expanded the number of mental disorders, while also removing some as understanding or values change. Over the years many of these amendments have courted controversy.

These days, criticisms of the DSM are that it medicalises normal behaviour such as fidgetiness, noisiness and shyness.

Currently, three temper tantrums a week, negativity, irritability and anger would qualify a child to be labelled with disruptive mood dysregulation disorder. The label assumes first that the child is suffering from a problem, and second that the problem is pathological. Yet one may also question why it is the child who must be labelled and not the parents. For example, why do we not have a diagnosis called inability to discipline one’s child disorder?

What the “problem” is and who is judged to be the party “suffering” from it are value judgments which carry with them the cultural biases and assumptions of the individuals making those judgments. If we don’t examine value judgments properly, we risk making judgments that are discriminatory or harmful.

For example, although hysteria has now disappeared from official psychiatric diagnosis, there are elements of it present within other psychiatric diagnoses, most notably premenstrual dysphoric disorder (PMDD).

Commonly described as a more severe form of premenstrual stress (PMS), PMDD has been accused of labelling as a mental disorder normal and understandable reactions to the sort of stressful circumstances that disproportionately affect women in a modern society that still has not achieved gender equality.

In this way, psychiatric diagnosis could act as a way of brushing aside indicators of social injustices.

Likewise, sadness and changes in sleep, eating and so on can be normal and understandable reactions to loss (e.g. in the case of bereavement), not necessarily indicators of mental illness. In fact, behaviours like these can act as a positive sign that something is wrong, functioning as a catalyst for changing one’s situation for the better.

But the DSM only focuses on these “symptoms” and does not take into account the individual’s context. This in itself is a value judgment.

This is why our process of classifying mental illnesses should involve experts for whom examining value judgments is their bread and butter – philosophers. Bioethicists and philosophers of psychiatry are trained in bringing value judgments to light and analysing them in depth.

The way we classify mental illnesses also has broad implications for those diagnosed and for society – something that sociologists would be well placed to consider.

We could make good use of these experts by requiring each revision of the DSM to pass through an ethics assessment by an independent panel made up of philosophers, sociologists and ethicists.

Philosophers could identify and deliberate the value issues, sociologists could present the possible social consequences of proposed changes, and ethicists could make the complex harm/benefit analyses and ethical trade-offs that will inevitably be involved.

The panel also needs to have “teeth”, so it should have the power to veto or modify a category.

This might sound like a provocative proposal, but it is similar to the procedure we already have for scientific studies. Just as these studies must gain ethics approval before they go ahead in order to mitigate harm to participants and the community, having an ethics review panel would be an extra step of “checks and balances” for the DSM.

While those involved in making the DSM come from a variety of backgrounds – primarily psychiatrists, psychologists, social workers and clinicians – none have been primarily ethicists or philosophers.

And while some psychiatrists might have the training and experience that enables them to examine value judgments, it would be unreasonable to expect that to be the case, just as it would be unreasonable to expect ethicists and philosophers to be able to evaluate scientific judgments.

The solution I propose is based on the idea that psychiatric diagnosis should serve an ethical purpose – relieving certain forms of suffering and disease.

In light of this ethical purpose, we must do our utmost to consider value judgments that can cloud our view of “illness” and how it should be treated. I believe establishing an ethics review panel for the DSM can go a significant way towards achieving that goal.

Older people don’t need to suffer depression or anxiety in silence | Ann Robinson

Nearly half of all adults surveyed for AgeUK say they have experienced depression or anxiety, but many feel they have to keep a stiff upper lip and soldier on rather than seek help. There has been some great work in raising awareness and tackling the stigma of mental health problems, spearheaded by the glamorous young royals, but it tends to be aimed at young people, with little or no emphasis on elderly people. For them it’s a triple whammy: they are less likely to seek help, GPs may not recognise the signs, and society may expect depression to be a natural consequence of ageing, loss and loneliness.

NHS England is encouraging GPs to look out for mental health problems in older patients, and offer interventions – talking therapies or medication – as appropriate. But is it true that depression is an inevitable part of ageing? Is the older generation more stoical? Are the young more flaky? And how can you tell if you have depression yourself, or if an older friend or relative is suffering unnecessarily?


Research has found older people respond extremely well to talking therapies

It is true that older people may have to put up with bereavement, pain, financial concerns, loneliness and ill health – and all of those can trigger depression and anxiety if you’re susceptible. But it’s not inevitable; people in the UK report being at their happiest between the ages of 65-79 (though happiness levels plummet after the age of 90). In the AgeUK survey, 21% of the people who reported suffering from anxiety or depression said their symptoms had worsened with time – but that left nearly 80% who didn’t feel their mental health had worsened.

Looking at suicide rates – arguably the most extreme expression of unbearable mental distress – the group at greatest risk are men aged 40 to 44. People are less likely to take their own life in their 60s than in their 30s but, of course, every suicide can be seen as a potentially preventable tragedy and there is no room for complacency at any age. The need to identify those individuals at any age who are most at risk and in need of expert intervention, is a priority for all healthcare professionals.

Mental health problems can be tricky – it is hard to know if a relative or elderly friend is sinking gradually into severe depression, or becoming paralysed by debilitating anxiety. It’s even hard to know yourself: when does feeling fed up, sad and a bit socially isolated tip into depression? When does fretting about grandkids, money and the state of the world become unmanageable anxiety? And even with all the training, time and sensitivity in the world, any GP can miss the signs if a person is determined to present a positive front.

The mood self-assessment quiz on the NHS Choices website is a good starting point. GPs also use a range of screening tools, but the simplest version consists of just two questions: over the past two weeks, have you felt little interest or pleasure in doing things? And: have you felt down, depressed or hopeless? You don’t need to be a doctor to ask yourself, a friend or an elderly relative these questions, and see a GP if the answers are a resounding “yes”.

The NHS primer for GPs says an interesting thing; how a patient makes the GP feel is often a good reflection of how that person is feeling. “A person who consistently annoys you could well be depressed or have a personality disorder, and a person who perplexes you might be psychotic.” Specific questions can help, such as: “Do you enjoy seeing your grandchildren?”

And it’s such a shame to miss the signs of poor mental wellbeing because there is help out there. Research has found older people respond extremely well to talking therapies, and medication may be safe and effective. Nearly three-quarters of the people in the AgeUK survey felt that having more opportunities to connect with other people, such as joining local activity groups, would be positive.

The message is clear: depression and anxiety are not an inevitable part of ageing. Older people don’t need to suffer in silence. There’s help out there. We all have a role to play in making sure that anyone who needs it, speaks up. Stoicism and resilience are fine qualities, but you get no prizes for mental anguish that could, potentially, be assuaged.

Ann Robinson has been a GP for 16 years

In the UK, Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international suicide helplines can be found at www.befrienders.org

I was sexually assaulted in the back of my ambulance. Frontline staff need protecting

As an ambulance technician for many years, I have learnt to cope with the many difficult situations and challenges thrown at you in the line of duty.

But a night shift in the centre of town can be tough at the best of times. And I remember this particular night shift as though it happened yesterday.

In March last year my colleague and I were sent on a call to help a man who was drunk and doubly incontinent in the town centre. Patients can present challenges like this, but we are here to help those in need because that’s our duty of care. I dialled in to check with our control centre whether this man was a known patient and whether he posed a known risk. I heard nothing back to sound alarm bells, or even raise slight concern.

When my junior colleague and I went to provide him with assistance, he spat at us. He became verbally abusive. After calming him and transporting him to the ambulance, that’s when it happened. He waited until he had me alone. And then he touched me.

I’ll never forget the look in his eyes. He seized my leg, he grabbed my right breast. Tears come to my eyes now just reliving the shock – and the violation I felt.

It later transpired that this man was a notorious sexual predator and had breached a criminal behaviour order four times. The police and the local hospital had instructions on how to deal with him and ensure he was never left alone with a woman.

But for all the “zero tolerance” stickers displayed in my ambulance, I was put into a dangerous situation that should have been flagged. Only it wasn’t, for the simple reason that there is no formal communication between the services – they just don’t talk to each other. And they aren’t required to.

To this day, services do not work together properly to flag danger to workers. It’s clear something more needs to be done to better protect emergency workers. That’s why, together with my trade union, GMB, we are backing a private members’ bill in parliament, sponsored by Labour MP Chris Bryant, to make assaults against all emergency services staff an aggravated offence.

The bill also calls for a duty of care for employers to ensure that they act to protect frontline emergency workers properly. At this moment in time, there is still no legal protection for paramedics, doctors or nurses. My case shows it is badly needed.

In my own local ambulance trust, there have been more than 1,500 reports of physical and verbal abuse against medics over the past three years. But that’s just the tip of the iceberg. These incidents are happening nationwide with alarming frequency.

That night, the man who assaulted me engineered a situation to ensure he had me alone – and I realise now it was a clever game played by someone who had done all this before. The trauma was made worse by the knowledge that it could have been prevented if services spoke to each other and exercised a duty of care. Even after what I went through, steps just weren’t taken to ensure it could not happen again. I felt so let down and alone and I took several months off work.

My perpetrator was eventually sentenced to 39 months in prison – 18 months of that sentence were for the sexual assault on me. But he is due for release before Christmas and I feel sick at the prospect of seeing him again.

I also fear that another frontline worker could be forced to endure what I have unless the law changes. I’m determined that we do something to stop that from happening – and properly protect our protectors.

This series aims to give a voice to the staff behind the public services that are hit by mounting cuts and rising demand, and so often denigrated by the press, politicians and public. If you would like to write an article for the series, contact kirstie.brewer@theguardian.com

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Cancer patients need more than survival | Fay Schopen

The horror of a cancer diagnosis is unforgettable. It is the grimmest and most personal bad news. The solemnness of the doctor; the loaded pause as the nurse asks: “Is anyone with you today?”; the strategically placed box of tissues.

But this, of course, is just the beginning. People often refer to cancer as a journey, something I have no truck with whatsoever. Six years after my own run-in with the solemn doctor, the nurse and the tissues, I still haven’t come up with a glib phrase to describe my experience. Don’t get me started on battles. But it is certainly a long, gruelling process, fraught with fear and disappointment. And drugs.

Drugs to hinder the cancer; and then drugs to hinder the side effects of those drugs. Painkillers. Anti-emetics (none of them worked for me, by the way, so you may want to save yourself the bother). Injections. Antibiotics. Sleeping pills. On goes the list, until you can barely shut the doors of your medicine cabinet. Side effects are noted carefully, prescriptions are dispensed. The pharmacist is your new best friend.

So the news that the majority of new cancer drugs in Europe do not prolong life or boost the wellbeing of patients is yet another bitter pill to swallow (or not), another obstacle in a long line of cancer-related setbacks.

The study, published in the British Medical Journal, looked at drugs approved by the European Medicines Agency between 2009 and 2013. Researchers found that overall 57% came with no conclusive evidence that they improved either survival or quality of life by the time they entered the market. In almost two-thirds of cases, there was no conclusive evidence that they improved survival rates, and in only 10% of uses did the drugs improve quality of life.

If you’re surprised by what seems to be a devastating failure of medical research, so are scientists. Carl Heneghan, professor of evidence-based medicine at the University of Oxford, said it was “hard to understand why half the drugs were approved in the first place if they provide no clinically meaningful benefit”.

I was lucky, in that sense. The treatment for my breast cancer was standard. Surgery first; then chemotherapy. The old slash and burn. I didn’t spend my time Googling drug trials; chasing stories about the latest miracle cures, contacting far-flung hospitals and begging consultants to be given a chance. I didn’t try to understand immunotherapy, or wish that I had private health insurance so I could access drugs not available on the NHS. Plenty of people do, especially with rarer cancers.

Even so, unpicking these issues is not simple. Large trials that examine survival rates are expensive and lengthy. When it comes to research on rare cancers, robust evidence is hard to gather. Then there’s selectivism – we invariably only hear about the successes; the drugs that make the grade, not the thousands that didn’t.

We have, perhaps, a skewed sense of how medical research works, and what clinical trials are for. Mainstream science reporting has never done well with grey areas. Plug “wonder drug” and “cancer” into the search engine of Mail Online, for example, and page after page of results pop up. Breast, prostate and pancreatic cancer can all, it seems, be halted in their tracks by “phenomenal” “miracle cures”, with one “wonder drug” apparently “melting cancer cells”.


I didn’t spend my time Googling drug trials, chasing stories about the latest miracle cures

Of course, these cures aren’t all they’re cracked up to be. There was a small, telling and heartbreaking sentence in the BMJ report: “Most drugs (90%) were approved for use in a non-curative setting.” The authors express concern that new drugs and treatments are often discussed and promoted as “breakthroughs” even though they may not be clinically meaningful to patients. Then there’s the often considerable cost.

So perhaps the stark statistics in the report are not something to cry over, but to consider in the wider context: this is what’s behind the curtain; this is how medical research works, more or less. Whether or not this is a good or desirable thing is arguable.

To me – and to the report’s authors – the major flaw in the clinical trials reviewed is the lack of emphasis on quality of life. Huseyin Naci, one of the report’s co-authors, said it was “very surprising … that not very many studies are looking at overall survival or quality of life as their [primary] objective”.

There are many things cancer patients are supposed to accept simply because medical professionals expect you to: chronic nausea due to chemotherapy, for example. It makes life unbearable, and that’s added to the headaches, the exhaustion, and the existential stress of not knowing if you’re going to live or die. That is why, whatever drugs come down the pipeline in the next few years, quality of life should underpin any and all medical research. For what is the point of simply surviving – not living – if your existence is a painful, feeble and miserable one?

Fay Schopen is a freelance journalist

Cancer patients need more than survival | Fay Schopen

The horror of a cancer diagnosis is unforgettable. It is the grimmest and most personal bad news. The solemnness of the doctor; the loaded pause as the nurse asks: “Is anyone with you today?”; the strategically placed box of tissues.

But this, of course, is just the beginning. People often refer to cancer as a journey, something I have no truck with whatsoever. Six years after my own run-in with the solemn doctor, the nurse and the tissues, I still haven’t come up with a glib phrase to describe my experience. Don’t get me started on battles. But it is certainly a long, gruelling process, fraught with fear and disappointment. And drugs.

Drugs to hinder the cancer; and then drugs to hinder the side effects of those drugs. Painkillers. Anti-emetics (none of them worked for me, by the way, so you may want to save yourself the bother). Injections. Antibiotics. Sleeping pills. On goes the list, until you can barely shut the doors of your medicine cabinet. Side effects are noted carefully, prescriptions are dispensed. The pharmacist is your new best friend.

So the news that the majority of new cancer drugs in Europe do not prolong life or boost the wellbeing of patients is yet another bitter pill to swallow (or not), another obstacle in a long line of cancer-related setbacks.

The study, published in the British Medical Journal, looked at drugs approved by the European Medicines Agency between 2009 and 2013. Researchers found that overall 57% came with no conclusive evidence that they improved either survival or quality of life by the time they entered the market. In almost two-thirds of cases, there was no conclusive evidence that they improved survival rates, and in only 10% of uses did the drugs improve quality of life.

If you’re surprised by what seems to be a devastating failure of medical research, so are scientists. Carl Heneghan, professor of evidence-based medicine at the University of Oxford, said it was “hard to understand why half the drugs were approved in the first place if they provide no clinically meaningful benefit”.

I was lucky, in that sense. The treatment for my breast cancer was standard. Surgery first; then chemotherapy. The old slash and burn. I didn’t spend my time Googling drug trials; chasing stories about the latest miracle cures, contacting far-flung hospitals and begging consultants to be given a chance. I didn’t try to understand immunotherapy, or wish that I had private health insurance so I could access drugs not available on the NHS. Plenty of people do, especially with rarer cancers.

Even so, unpicking these issues is not simple. Large trials that examine survival rates are expensive and lengthy. When it comes to research on rare cancers, robust evidence is hard to gather. Then there’s selectivism – we invariably only hear about the successes; the drugs that make the grade, not the thousands that didn’t.

We have, perhaps, a skewed sense of how medical research works, and what clinical trials are for. Mainstream science reporting has never done well with grey areas. Plug “wonder drug” and “cancer” into the search engine of Mail Online, for example, and page after page of results pop up. Breast, prostate and pancreatic cancer can all, it seems, be halted in their tracks by “phenomenal” “miracle cures”, with one “wonder drug” apparently “melting cancer cells”.


I didn’t spend my time Googling drug trials, chasing stories about the latest miracle cures

Of course, these cures aren’t all they’re cracked up to be. There was a small, telling and heartbreaking sentence in the BMJ report: “Most drugs (90%) were approved for use in a non-curative setting.” The authors express concern that new drugs and treatments are often discussed and promoted as “breakthroughs” even though they may not be clinically meaningful to patients. Then there’s the often considerable cost.

So perhaps the stark statistics in the report are not something to cry over, but to consider in the wider context: this is what’s behind the curtain; this is how medical research works, more or less. Whether or not this is a good or desirable thing is arguable.

To me – and to the report’s authors – the major flaw in the clinical trials reviewed is the lack of emphasis on quality of life. Huseyin Naci, one of the report’s co-authors, said it was “very surprising … that not very many studies are looking at overall survival or quality of life as their [primary] objective”.

There are many things cancer patients are supposed to accept simply because medical professionals expect you to: chronic nausea due to chemotherapy, for example. It makes life unbearable, and that’s added to the headaches, the exhaustion, and the existential stress of not knowing if you’re going to live or die. That is why, whatever drugs come down the pipeline in the next few years, quality of life should underpin any and all medical research. For what is the point of simply surviving – not living – if your existence is a painful, feeble and miserable one?

Fay Schopen is a freelance journalist

Cancer patients need more than survival | Fay Schopen

The horror of a cancer diagnosis is unforgettable. It is the grimmest and most personal bad news. The solemnness of the doctor; the loaded pause as the nurse asks: “Is anyone with you today?”; the strategically placed box of tissues.

But this, of course, is just the beginning. People often refer to cancer as a journey, something I have no truck with whatsoever. Six years after my own run-in with the solemn doctor, the nurse and the tissues, I still haven’t come up with a glib phrase to describe my experience. Don’t get me started on battles. But it is certainly a long, gruelling process, fraught with fear and disappointment. And drugs.

Drugs to hinder the cancer; and then drugs to hinder the side effects of those drugs. Painkillers. Anti-emetics (none of them worked for me, by the way, so you may want to save yourself the bother). Injections. Antibiotics. Sleeping pills. On goes the list, until you can barely shut the doors of your medicine cabinet. Side effects are noted carefully, prescriptions are dispensed. The pharmacist is your new best friend.

So the news that the majority of new cancer drugs in Europe do not prolong life or boost the wellbeing of patients is yet another bitter pill to swallow (or not), another obstacle in a long line of cancer-related setbacks.

The study, published in the British Medical Journal, looked at drugs approved by the European Medicines Agency between 2009 and 2013. Researchers found that overall 57% came with no conclusive evidence that they improved either survival or quality of life by the time they entered the market. In almost two-thirds of cases, there was no conclusive evidence that they improved survival rates, and in only 10% of uses did the drugs improve quality of life.

If you’re surprised by what seems to be a devastating failure of medical research, so are scientists. Carl Heneghan, professor of evidence-based medicine at the University of Oxford, said it was “hard to understand why half the drugs were approved in the first place if they provide no clinically meaningful benefit”.

I was lucky, in that sense. The treatment for my breast cancer was standard. Surgery first; then chemotherapy. The old slash and burn. I didn’t spend my time Googling drug trials; chasing stories about the latest miracle cures, contacting far-flung hospitals and begging consultants to be given a chance. I didn’t try to understand immunotherapy, or wish that I had private health insurance so I could access drugs not available on the NHS. Plenty of people do, especially with rarer cancers.

Even so, unpicking these issues is not simple. Large trials that examine survival rates are expensive and lengthy. When it comes to research on rare cancers, robust evidence is hard to gather. Then there’s selectivism – we invariably only hear about the successes; the drugs that make the grade, not the thousands that didn’t.

We have, perhaps, a skewed sense of how medical research works, and what clinical trials are for. Mainstream science reporting has never done well with grey areas. Plug “wonder drug” and “cancer” into the search engine of Mail Online, for example, and page after page of results pop up. Breast, prostate and pancreatic cancer can all, it seems, be halted in their tracks by “phenomenal” “miracle cures”, with one “wonder drug” apparently “melting cancer cells”.


I didn’t spend my time Googling drug trials, chasing stories about the latest miracle cures

Of course, these cures aren’t all they’re cracked up to be. There was a small, telling and heartbreaking sentence in the BMJ report: “Most drugs (90%) were approved for use in a non-curative setting.” The authors express concern that new drugs and treatments are often discussed and promoted as “breakthroughs” even though they may not be clinically meaningful to patients. Then there’s the often considerable cost.

So perhaps the stark statistics in the report are not something to cry over, but to consider in the wider context: this is what’s behind the curtain; this is how medical research works, more or less. Whether or not this is a good or desirable thing is arguable.

To me – and to the report’s authors – the major flaw in the clinical trials reviewed is the lack of emphasis on quality of life. Huseyin Naci, one of the report’s co-authors, said it was “very surprising … that not very many studies are looking at overall survival or quality of life as their [primary] objective”.

There are many things cancer patients are supposed to accept simply because medical professionals expect you to: chronic nausea due to chemotherapy, for example. It makes life unbearable, and that’s added to the headaches, the exhaustion, and the existential stress of not knowing if you’re going to live or die. That is why, whatever drugs come down the pipeline in the next few years, quality of life should underpin any and all medical research. For what is the point of simply surviving – not living – if your existence is a painful, feeble and miserable one?

Fay Schopen is a freelance journalist

Cancer patients need more than survival | Fay Schopen

The horror of a cancer diagnosis is unforgettable. It is the grimmest and most personal bad news. The solemnness of the doctor; the loaded pause as the nurse asks: “Is anyone with you today?”; the strategically placed box of tissues.

But this, of course, is just the beginning. People often refer to cancer as a journey, something I have no truck with whatsoever. Six years after my own run-in with the solemn doctor, the nurse and the tissues, I still haven’t come up with a glib phrase to describe my experience. Don’t get me started on battles. But it is certainly a long, gruelling process, fraught with fear and disappointment. And drugs.

Drugs to hinder the cancer; and then drugs to hinder the side effects of those drugs. Painkillers. Anti-emetics (none of them worked for me, by the way, so you may want to save yourself the bother). Injections. Antibiotics. Sleeping pills. On goes the list, until you can barely shut the doors of your medicine cabinet. Side effects are noted carefully, prescriptions are dispensed. The pharmacist is your new best friend.

So the news that the majority of new cancer drugs in Europe do not prolong life or boost the wellbeing of patients is yet another bitter pill to swallow (or not), another obstacle in a long line of cancer-related setbacks.

The study, published in the British Medical Journal, looked at drugs approved by the European Medicines Agency between 2009 and 2013. Researchers found that overall 57% came with no conclusive evidence that they improved either survival or quality of life by the time they entered the market. In almost two-thirds of cases, there was no conclusive evidence that they improved survival rates, and in only 10% of uses did the drugs improve quality of life.

If you’re surprised by what seems to be a devastating failure of medical research, so are scientists. Carl Heneghan, professor of evidence-based medicine at the University of Oxford, said it was “hard to understand why half the drugs were approved in the first place if they provide no clinically meaningful benefit”.

I was lucky, in that sense. The treatment for my breast cancer was standard. Surgery first; then chemotherapy. The old slash and burn. I didn’t spend my time Googling drug trials; chasing stories about the latest miracle cures, contacting far-flung hospitals and begging consultants to be given a chance. I didn’t try to understand immunotherapy, or wish that I had private health insurance so I could access drugs not available on the NHS. Plenty of people do, especially with rarer cancers.

Even so, unpicking these issues is not simple. Large trials that examine survival rates are expensive and lengthy. When it comes to research on rare cancers, robust evidence is hard to gather. Then there’s selectivism – we invariably only hear about the successes; the drugs that make the grade, not the thousands that didn’t.

We have, perhaps, a skewed sense of how medical research works, and what clinical trials are for. Mainstream science reporting has never done well with grey areas. Plug “wonder drug” and “cancer” into the search engine of Mail Online, for example, and page after page of results pop up. Breast, prostate and pancreatic cancer can all, it seems, be halted in their tracks by “phenomenal” “miracle cures”, with one “wonder drug” apparently “melting cancer cells”.


I didn’t spend my time Googling drug trials, chasing stories about the latest miracle cures

Of course, these cures aren’t all they’re cracked up to be. There was a small, telling and heartbreaking sentence in the BMJ report: “Most drugs (90%) were approved for use in a non-curative setting.” The authors express concern that new drugs and treatments are often discussed and promoted as “breakthroughs” even though they may not be clinically meaningful to patients. Then there’s the often considerable cost.

So perhaps the stark statistics in the report are not something to cry over, but to consider in the wider context: this is what’s behind the curtain; this is how medical research works, more or less. Whether or not this is a good or desirable thing is arguable.

To me – and to the report’s authors – the major flaw in the clinical trials reviewed is the lack of emphasis on quality of life. Huseyin Naci, one of the report’s co-authors, said it was “very surprising … that not very many studies are looking at overall survival or quality of life as their [primary] objective”.

There are many things cancer patients are supposed to accept simply because medical professionals expect you to: chronic nausea due to chemotherapy, for example. It makes life unbearable, and that’s added to the headaches, the exhaustion, and the existential stress of not knowing if you’re going to live or die. That is why, whatever drugs come down the pipeline in the next few years, quality of life should underpin any and all medical research. For what is the point of simply surviving – not living – if your existence is a painful, feeble and miserable one?

Fay Schopen is a freelance journalist