On Tuesday 2nd February a strange thing happened on Twitter. Thousands of people began saying the unsayable: that they suffered from a mental illness. From depression, to anxiety, to personality disorders, celebrities and the common man alike were telling the Twittersphere all about the most taboo area of their lives. The originator of the breathtaking new trend was Rebecca Front, actress and star of The Thick of It. She tweeted “Hey well known Twitterers. Fancy taking the stigma out of mental illness? I’ll start: I’m Rebecca Front & I’ve had panic attacks. #whatstigma?” And thus the ‘WhatStigma?’ hashtag was born. Minutes later it was trending nationally, with Ruby Wax’s and Sue Perkins’ amongst the earliest replies. “The mad dog [depression] has got its teeth in and won’t let go. #whatstigma?” tweeted one of Front’s followers, while another added the succinct “I’m a One In Four. #whatstigma?”
What Stigma?
I spoke to Rebecca Front about the hashtag, and she was modest about the part she played: “I just opened a door,” she told me. “People started saying all these wonderful things, but it was nothing to do with me!”
The same day, Nick Clegg pledged to deliver £400m to the treatment of mental illnesses, in a bid to put mental health on a par with physical. “This is four hundred million pounds,” declared Clegg. “It’s new money, it’s extra money, and it’s money that could lead to the 1.2 million people that don’t have access, having access to talking therapies.” Joy at the announcement was short-lived. It was soon learnt that the deputy Prime Minister had not been altogether honest about the funds, and that this ‘new’ money was anything but; on February 3rd the Health Service Journal announced that the money would, in fact, be drawn from existing health budgets.
Whether or not the funding is new, however, this February is an exciting month in the world of mental illness. As many as 70,000 patients may be able to return to work thanks to Clegg’s budget allocation; ‘No Health Without Mental Health’ is the government’s new campaign slogan. Alastair Campbell will finally have his way when section 141 of the 1983 Mental Health Act, which allows MPs sectioned for more than six months to be removed from office, is repealed.
The question that ought to be asked, however, is: will this be enough? An increase in funds is always a good thing, and changes to the Mental Health Act are long overdue, but is it really much more than coins and catchphrases? Shouldn’t we be thinking more like Rebecca Front, and breaking down the very barriers that prevent us from truly understanding the life of the mother who fights to get out of bed every morning while battling depression, or the young man whose future is marred because no one wants to employ someone with a personality disorder? Must we not endeavour to find out what social construct it is that allows us to discuss freely physical afflictions, yet seals our lips when it comes to what’s going on in our minds? I don’t know the answers to these questions, so to try to find out, I took a trip to The Retreat.
The Retreat
Founded in 1792 and sitting close to the University campus at the far east end of Heslington Road, The Retreat is a mental health care provider, and plays a big part in the history of moral psychiatric treatment. Before pioneering institutions such as this, individuals suspected of mental ill-health could expect to be chained to the floor with manacles, subjected to freezing cold baths and generally treated like wild animals. The Retreat had an altogether different approach: its Quaker founder William Tuke believed, for the first time, that mental patients were capable of recovery. Built on the city’s highest ground to benefit from purer air, patients could stroll around the extensive grounds between talking therapies and rest.
Today, the buildings still stand in gardens that wouldn’t look out of place at a stately home, and the interiors are no less impressive. As I was shown round the facility by Louise Clarke, the marketing manager, I was blown away by how staggeringly idyllic and serene it felt. At the bottom of the rolling lawns and past the manicured flower beds (“We’re re-building the rose gardens,” Clarke tells me, “so soon the patients will have those to enjoy, too.”) is the Quaker Cemetery. Joseph Rowntree is buried here, but it would take a long search to find his plot. Every headstone in each of the neat rows is identical to its neighbours; plain and modest. No marble angels or lengthy inscriptions – in death, Quakers preserve the same values they do in life, and the same values that inspire the care at The Retreat: that everyone ought to be treated with equal dignity and respect.
Today, The Retreat is staffed by Quakers only at its top level, but the principles are still evident in its day-to-day running. As I marvel at the sheer un-clinical feeling of the place, Clarke says simply, “this is how it must be. We have to ask ourselves, ‘Would you want to live here?’ Our patients deserve the same standards in here as they would desire outside.”
Hearing these things about The Retreat was uplifting; this was an open and honest place where patients could escape judgement, have access to superb facilities, and see their consultants regularly.
I had a feeling, though, that this wasn’t a universal experience – what did patients who weren’t lucky enough to be referred to the Retreat (or somewhere like it) go through, and what was their experience of the our country’s treatment of the mentally ill? Were they optimistic for the future or did they, as my nagging doubts suggested, see through what were empty attempts by the government to placate them?
Mental Health Forum
To hear directly from patients who suffered from mental illness, I went to the Mental Health Forum to seek out anyone who was willing to tell me about their experiences. The response I received was overwhelming; voices of those with mental illness are usually ignored, if not actively feared, and the chance to put across their story without being judged was an appealing one. Michael* is in his late thirties and is schizophrenic. He describes the responses he’s had to this news as “abominable,” saying he faces “daily trivialisation, denial and lack of acknowledgement.” He believes he has been badly let down by the National Health Service, having received only ten sessions with a psychologist in over twenty years. Sectioned on three occasions and hospitalised on four, he was aggrieved at the quality of care he received, telling me that “treatment consisted of being heavily drugged.” He also claims to have been sexually abused by hospital staff the first time he was sectioned, at the age of seventeen.
Michael sees ample room for improvement in the health services, and believes that the key to helping patients is to “stop labelling, and then drugging them up.” Perhaps the new money to fund talking therapies will be of benefit then, as Michael tells me that “a lot more should be done to address people’s confusion and distress with more holistic, therapeutic, understanding and humane models of recovery.” But the onus is not just on the health services to change, but also on the public, as he also reveals that “the stigma and discrimination faced by people [with mental illness] is rife and endemic.”
Claire*, 58, has a unique perspective on the treatment of people with mental illness as, growing up, she watched her schizophrenic mother undergo electroconvulsive therapy (in which electronically induced seizures are applied) and sectioning. Despite being acutely aware that she needed medical help after her first suicide attempt at the age of just thirteen, Claire avoided the healthcare system due to these memories. Her current diagnoses are Borderline Personality Disorder, Dissociative Identity Disorder, Post-Traumatic Stress Disorder, Agoraphobia and rapid cycling Bipolar Disorder. Claire has previously been married and has a son, and has under- and post-graduate degrees. She worked in teaching for most of her life, until what she describes as a “total collapse” ten years ago forced her to stop. She credits Dialectic Behaviour Therapy with allowing her to recover from the break-down. DBT is a treatment that combines techniques for emotion regulation and distress tolerance. It has roots in Buddhism, and has shown to be effective in patients with Borderline Personality Disorders.
Medication Versus Talking Therapies
Claire does not currently take any medication, and as a result lives in sheltered accommodation where carers can check on her if she’s feeling vulnerable. She doesn’t, however, advocate a blanket ‘no medication’ approach. “I was medicated for 18 months while I did Dialectic Behaviour Therapy,” she tells me, “and I was pleased to have the help of the meds. It was a personal choice to come off them once I felt I had some skill available to cope with intense emotional turmoil.” This being said, Claire goes on to tell me that she now avoids seeing a psychiatrist as she feels they will push medication on her; “it is particularly so in relation to the Dissociative Identity Disorder, which I think could be pretty much medicated out of me, but I would be so stupefied that I’d be incapable.” The broadness of the mental-illness spectrum convinces Claire that there can be no general approach when it comes to medicative or non-medicative treatments, and she believes that they can be especially effective when used together.
Claire has a positive opinion of some aspects of the modern health service’s treatment of mental patients, telling me she has witnessed “a vast change in the past thirty years.” A move away from oppressive medication, and one towards behavioural therapies has meant “less chemical straight-jacketing, more open wards, more humane treatment in general.” The medications themselves, meanwhile, have dramatically improved in quality, and allow mental patients to find solace from their illnesses without numbing their ability to function normally.
Treatment still has a long way to go, however, and Claire tells me about the frustration people in her situation feel in having decisions about their treatment taken away from them. “There is still a pervading attitude that we, the ill, are not to be trusted to know what we need,” she explains. Yet must there not be some reasoning behind allowing a learned professional to decide the treatment for a patient who, after all, may not be fully in command of their faculties? But as Claire explains, “a junior doctor, who may be on their first psychiatric rotation, is given more authority over decisions affecting me than I am myself, and can actually choose to go directly against my stated wishes.”
She has witnessed a range of reactions from others upon finding out that she has a personality disorder. “Most people are a bit afraid, and ask me ‘What does that mean you do?’” ‘She has found that the most common response is fear that she will become violent, or be a danger to herself. One of the worst reactions she ever faced was, sadly, from nurses on a surgical ward where she was recovering from a knee operation. “One leaned away from the bed as though I was liable to eat her if she came within reach,” she admits, while another told Claire during a hallucination that “all this psychology stuff is ridiculous.”
Claire recently became a trainer of new therapists recruited for the Improving Access to Psychological Therapies programme, and was astounded by the extent of ignorance even within this system. “The lack of understanding, awareness and empathy among them has taken my breath away,” she tells me. There are evidently some serious misconceptions about mental illness in the health sector itself: “I’ve been told personality disorder is just an excuse for bad behaviour,” she says, “or not really a mental illness at all, untreatable, incurable.” No stranger to accusations about the hidden motives of mental patients, Claire tells me about the attitudes she’s known that people who self-harm or attempt suicide are “manipulative and attention seeking, that we are all addicted, or have addictive personalities.”
Despite the constant battle of living with mental illness, Claire is positive about the future. She believes treatment will continue to improve, that the services are on the right track with their new implementation of talking therapies. She tells me that she still struggles with “the intense emotionality” of her illnesses, but has had “many positive experiences that have arisen directly from my having a personality disorder.”
One In Four
Michael and Claire’s experiences varied greatly in terms of the care they received, but both had similarly negative experiences when it came to people’s reactions to their mental illness. Still unsure what to think, I contacted Mark Brown, editor of magazine One In Four. Brown was diagnosed with Bipolar II Disorder (a form of manic depression that elicits more deep lows than manic periods) in his 20s and found his education and career trajectory disrupted by his illness. Ten years on, he edits the first lifestyle magazine aimed specifically at those with mental illnesses. He is confident that society is moving in the right direction when it comes to our perception of mental illness: “we are at the beginning of a period of growing public understanding about mental ill health,” he told me “people are feeling more comfortable telling others about their experiences.” He is not, however, without reservations: “discriminatory situations and attitudes still exist…I don’t think there is quite the acceptance of schizophrenia as there is of, say, depression.”
So what can the health services do to improve the experiences of people with mental illnesses? “People need help, support and treatment that works for them, and which they can access when they need it.” This issue of accessing help that might be available is a crucial one for Brown. “It’s a bit like trying to walk on a broken ankle,” he analogises: “you might be able to do it, but without proper treatment it won’t get better.”
So presumably the new budget allocations will be good news, then? Perhaps not. “While any possibility of putting mental health at the centre of health policy is something I support, it’s difficult not to feel that mental health treatment and services aren’t where they should be,” he explains. “It’s hard not to feel that the focus is always on shiny, eye-catching new initiatives rather than day-to-day ways that can help people attempt to get on with their lives.” Moreover, the revelation that the new £400m will come from existing health budgets undermines the significance of prioritising mental patients; “looking after people’s mental health is too important to be robbing Peter to pay Paul. People need the right treatment and support as soon as possible after they seek it.”
Providing extra treatment and support will be of huge benefit, but I had formed the impression from speaking to Michael and Claire that it is our misconceptions and judgemental approaches that can cause the most pain to sufferers. So I asked Brown whether government funding can work symbiotically with grass-roots attitude campaigns like Rebecca Front’s. “Anti-stigma campaigns work to tell people that experiencing mental health difficulties is just something that happens,” he explained. “They promise that getting help early is the best thing you can do. But if services aren’t there to keep that promise of help and support, it’s difficult for people not to feel abandoned or unimportant.”
So while it is essential to challenge our own views, this must be backed up with services delivered by the government. It is difficult to draw many concrete conclusions from my conversations with Michael, Claire and Mark; there are faults in the health service that urgently need addressing, but it does seem to be moving in the right direction. In general, the attitude of the public is poor, and yet there are people keen to break down these barriers and display their support.
It seems odd, trivial even, to measure public attitudes about mental health against 140-character outpourings of emotion on a social networking site. And yet it is exactly such displays of moving truth and honesty like Front’s that have the power to change our own prejudices, one by one, and in turn to reflect on the demands we make of our government to reform health care.
We may not be there yet, or even that close, but if we continue on this track the day might well be in sight that we can legitimately ask, “Stigma? What stigma?”
Names have been changed for confidentiality purposes.