Health secretary Jeremy Hunt. Photo: Getty
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Diagnosing cancer: why shaming and blaming GPs isn’t about improving patient safety

Cancer very often presents in ways we don’t expect. Creating a culture of fear around diagnosis isn’t a good thing.

“What do you think this is, doc?”

Mike opened his mouth as wide as possible and pointed to his right tonsil.

It was about the size of a conker and grey. I’d never seen anything like it.

“I’ve never seen anything like it” I said. “But I really don’t like the look of it.”

“So what could it be?” he asked.

“Mike, I’ve never seen tonsil cancer before, but I really think we should find out what that is as soon as possible.”

“Thanks doc, what do we do now?”

I referred him to the local ENT specialist and 2 weeks later he was diagnosed with cancer of his tonsil.


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“Could you sign my insurance form please?”

Aimee had been seeing a private physiotherapist for her back pain which started a month ago while she was gardening.

“Is the physio helping?” I asked. Aimee was a fit-looking 32 year old who worked for a city bank.

“Not much yet,” she said. “I’m still taking pain-killers and doing the exercises though.”

I’m not sure I examined her, she was in a rush, I was running late and she looked well.

Three months later I discovered that she had metastatic breast cancer. The back pain started when one of the vertebrae (bones) in her back fractured because the cancer had metastasised (spread) there. She saw three other doctors before one of them arranged for blood tests which showed signs of inflammation, then a bone-scan showed the metastatic spread and further tests revealed the breast cancer.

Both Mike and Aimee died last year.

I see about 2-3 new cases of cancer a year. Some are like Mike, some are like Aimee.

The secretary of state for health, Jeremy Hunt has announced, to cheering headlines from the Mail and the Mirror, that GPs who are slower than average to diagnose cancer will be “named and shamed”. If I have two patients like Mike I’ll be fine, two like Aimee and I’ll be named and shamed. One year green for good, the next year red for dangerous. If you want to wait until I’ve seen enough patients with cancer to be statistically significant, you might have to wait another 20 years.

Another problem is about which of the three GPs, one A&E doctor and two physiotherapists is responsible. I only saw her once. Guidelines recommend that we start investigating when a new episode of back pain hasn’t resolved by six weeks, but she had only had it for a month when she saw me.

After Aimee’s diagnosis our practice arranged a meeting with all the doctors and trainees to discuss how we could have helped her sooner. I reviewed all the literature I could find on back pain and breast cancer and presented a summary to the other doctors. We read the hospital reports and discussed Aimees concerns and opinions. We instituted a policy of every patient having a usual doctor, because one factor in the delay was seeing different doctors who were more likely to watch and wait than a doctor who had already made their own assessment and done that once. We also made a decision to discuss every patient who was diagnosed with cancer, whether or not their diagnosis is delayed, like Joan who didn’t see a GP until her breast was covered with a giant cancerous ulcer.

I don’t know if it has made a difference, because as a practice of 12,000 patients we only see about 20 new cases of cancer a year. But we haven’t had any significant delays in cancer diagnoses since then and all of us really appreciate learning from the cases. Cancer very often presents in ways we don’t expect.
 

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Shame is never useful. The natural response to shame is to hide, oneself or one’s actions or both. Another response might be to refer every patient who might possibly have cancer so that someone else, anyone else is responsible, but not you. That would be a disaster. Shame and blame are the last things you want if you’re looking for a culture of openness and safe patient care. The Francis and Berwick reports after Mid Staffs, both pointed to the dangers of a culture of fear,

Honest failure is something that needs to be protected otherwise people will continue to live in fear. (Francis)

Abandon blame as a tool and trust the goodwill and good intentions of NHS staff.  (Berwick)

According to airline and patient safety expert Sidney Dekker,

Accountability is the willingness to share accounts.

Fear is a grave risk to patient safety.

Shame as a policy satisfies our desire for a simple explanation, a bad doctor for example. This is an ancient myth we tell our children and ourselves; if we can identify the bogeymen, in this case the bad doctors, then we’ll be safe. Shame is also the product of a desire for retribution. Behind policies designed to shame people are not simply newspaper editors looking for headlines, or politicians looking for simple answers to complex problems, but aggrieved relatives, policy-makers or journalists trying to cope with a delayed diagnosis or a medical error.

Their concerns deserve to be taken seriously, very seriously indeed.

But if shame continues to shape policy, it will be a disaster for patient safety.

Of course, this policy may have nothing whatsoever to do with patient safety. It has always been a fantasy of Tim Kelsey (who Paul Nuki from NHS Choices said might be behind this idea) and other policy makers that patients should act more like consumers. In order to do that, the bond between patients and their GPs who they know and trust (but may be a little slower than average in diagnosing cancer) needs to be broken. One might even wonder if the constant denigration of GPs is part of this project. Then with alarming headlines and league tables patients will be scared (enabled) to choose another GP…. (thanks to Richardblogger for pointing this out here).

Further reading/watching:

Patient safety and quality: An evidence-based handbook for nurses. Chapter 35 Error reporting and disclosure.

Patient safety depends on NHS staff feeling valued, respected, engaged and supported: Culture and behaviour in the English NHS. Mary Dixon-Woods

Referring patients. Doctors’ anxiety has a lot to do with it.

Narrative, listening and forgiveness.  How the process of grieving can lead to forgiveness

Shame – and how it presents in clinical encounters.

The emotional labour of care. Health care is emotional labour.

 

Sidney Dekker – airline and patient safety expert and brilliant speaker. Lecture on Just Culture, short version:

Full version:

 

This article first appeared on abetternhs.wordpress.com and is crossposted here with permission.

ILONA WELLMANN/MILLENNIUM IMAGES, UK
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How the internet has democratised pornography

With people now free to circumvent the big studios, different bodies, tastes and even pubic hair styles are being represented online.

Our opinions and tastes are influenced by the media we consume: that much is obvious. But although it’s easy to have that conversation if the medium we are discussing is “safe for work”, pornography carries so much stigma that we only engage with it on simple terms. Porn is either “good” or “bad”: a magical tool for ­empowerment or a destructive influence on society. Many “pro-porn” campaigners shy away from nuanced critique, fearing it could lead to censorship. “Anti-porn” campaigners, convinced that porn is harmful by definition, need look no further than the mainstream tube sites – essentially, aggregators of clips from elsewhere – to gather examples that will back them up.

When we talk about the influence of porn, the emphasis is usually on a particular type of video – hardcore sex scenes featuring mostly slim, pubic-hairless women and faceless men: porn made for men about women. This kind of porn is credited with everything from the pornification of pop music to changing what we actually do in bed. Last year the UK government released a policy note that suggested porn was responsible for a rise in the number of young people trying anal sex. Although the original researcher, Cicely Marston, pointed out that there was no clear link between the two, the note prompted a broad debate about the impact of porn. But in doing so, we have already lost – by accepting a definition of “porn” shaped less by our desires than by the dominant players in the industry.

On the day you read this, one single site, PornHub, will get somewhere between four and five million visits from within the UK. Millions more will visit YouPorn, Tube8, Redtube or similar sites. It’s clear that they’re influential. Perhaps less clear is that they are not unbiased aggregators: they don’t just reflect our tastes, they shape what we think and how we live. We can see this even in simple editorial decisions such as categorisation: PornHub offers 14 categories by default, including anal, threesome and milf (“mum I’d like to f***”), and then “For Women” as a separate category. So standard is it for mainstream sites to assume their audience is straight and male that “point of view” porn has become synonymous with “top-down view of a man getting a blow job”. Tropes that have entered everyday life – such as shaved pubic hair – abound here.

Alongside categories and tags, tube sites also decide what you see at the top of their results and on the home page. Hence the videos you see at the top tend towards escalation to get clicks: biggest gang bang ever. Dirtiest slut. Horniest milf. To find porn that doesn’t fit this mould you must go out of your way to search for it. Few people do, of course, so the clickbait gets promoted more frequently, and this in turn shapes what we click on next time. Is it any wonder we’ve ended up with such a narrow definition of porn? In reality, the front page of PornHub reflects our desires about as accurately as the Daily Mail “sidebar of shame” reflects Kim Kardashian.

Perhaps what we need is more competition? All the sites I have mentioned are owned by the same company – MindGeek. Besides porn tube sites, MindGeek has a stake in other adult websites and production companies: Brazzers, Digital Playground, Twistys, PornMD and many more. Even tube sites not owned by MindGeek, such as Xhamster, usually follow the same model: lots of free content, plus algorithms that chase page views aggressively, so tending towards hardcore clickbait.

Because porn is increasingly defined by these sites, steps taken to tackle its spread often end up doing the opposite of what was intended. For instance, the British government’s Digital Economy Bill aims to reduce the influence of porn on young people by forcing porn sites to age-verify users, but will in fact hand more power to large companies. The big players have the resources to implement age verification easily, and even to use legislation as a way to expand further into the market. MindGeek is already developing age-verification software that can be licensed to other websites; so it’s likely that, when the bill’s rules come in, small porn producers will either go out of business or be compelled to license software from the big players.

There are glimmers of hope for the ethical porn consumer. Tube sites may dominate search results, but the internet has also helped revolutionise porn production. Aspiring producers and performers no longer need a contract with a studio – all that’s required is a camera and a platform to distribute their work. That platform might be their own website, a dedicated cam site, or even something as simple as Snapchat.

This democratisation of porn has had positive effects. There’s more diversity of body shape, sexual taste and even pubic hair style on a cam site than on the home page of PornHub. Pleasure takes a more central role, too: one of the most popular “games” on the webcam site Chaturbate is for performers to hook up sex toys to the website, with users paying to try to give them an orgasm. Crucially, without a studio, performers can set their own boundaries.

Kelly Pierce, a performer who now works mostly on cam, told me that one of the main benefits of working independently is a sense of security. “As long as you put time in you know you are going to make money doing it,” she said. “You don’t spend your time searching for shoots, but actually working towards monetary gain.” She also has more freedom in her work: “You have nobody to answer to but yourself, and obviously your fans. Sometimes politics comes into play when you work for others than yourself.”

Cam sites are also big business, and the next logical step in the trickle-down of power is for performers to have their own distribution platforms. Unfortunately, no matter how well-meaning your indie porn project, the “Adult” label makes it most likely you’ll fail. Mainstream payment providers won’t work with adult businesses, and specialist providers take a huge cut of revenue. Major ad networks avoid porn, so the only advertising option is to sign up to an “adult” network, which is probably owned by a large porn company and will fill your site with bouncing-boob gifs and hot milfs “in your area”: exactly the kind of thing you’re trying to fight against. Those who are trying to take on the might of Big Porn need not just to change what we watch, but challenge what we think porn is, too.

The internet has given the porn industry a huge boost – cheaper production and distribution, the potential for more variety, and an influence that it would be ridiculous to ignore. But in our failure properly to analyse the industry, we are accepting a definition of porn that has been handed to us by the dominant players in the market.

Girl on the Net writes one of the UK’s most popular sex blogs: girlonthenet.com

This article first appeared in the 16 February 2017 issue of the New Statesman, The New Times