This is how some of the major mental health charities work against the interests of mentally ill people

Today, there was a conference on mental illness. It was addressed by the deputy prime minister, Nick Clegg. The text of his speech is here. Since he was speaking about mental health in public, he inevitably aired a number of clichés and over-familiar memes.

So Mr Clegg repeated, of course, the blatant lie that 1 in 4 people will experience mental illness at some point in their lives. (It’s either way more than that – if you include everyone who experiences short term, self-limiting mental distress – or way fewer than that – if you include only those people with enduring difficulties which severely affect their quality of life.) And he read out a list of the kinds of people who are affected by mental illness –

It’s a dad who is off work with stress; a mum suffering panic attacks; a teenager with an eating disorder or a lonely grandfather coping with depression. It’s a good friend who’s feeling suicidal, a neighbour’s son dealing with schizophrenia or a work colleague managing bi-polar disorder

– which managed the neat trick of sounding very inclusive whilst simultaneously making it clear that us mentalists aren’t part of the collective “we” to whom and for whom he was speaking: note how the mentally ill are people you know rather than you yourself, and how it’s the neighbour’s kid rather than your own who has schizophrenia.

Mr Clegg also paid tribute, as a matter of course, to Stephen Fry and other celebrities who are out about their mental illness. (He even included Frank Bruno in the list, which seems a little odd since Mr Bruno was outed – involuntarily, and in grossly abusive terms – by The Sun, and has at times seemed profoundly reluctant to speak about his mental illness in public). These celebrities are very brave, of course, having revealed something that might damage their careers; the depth of determination revealed by their ability to achieve so much in the face of such difficult odds is also hugely admirable, and worthy of celebration. But in their ability to lead conspicuously successful lives – lives even more successful than those achieved by most people who don’t have to contend with mental illness – they are wholly exceptional, and a sustained focus upon them can be counter-productive.

The final meme Mr Clegg chose to incorporate into his speech – this one at rather greater length – was the theme of stigma. It has become, in recent years, impossible to speak about metal illness without talking about stigma. This is primarily because two of the biggest mental health charities in the UK, Mind and Rethink Mental Illness, have chosen to make it a primary focus of their campaigning, and are in receipt of large amounts of government money to do so. (This naturally has the consequence that much of the national conversation around mental illness focusses on the soft social problem of stigma, rather than the effects of the government’s welfare cuts on the most vulnerable mentally ill people.)

Long-term sufferers readers of this blog will know that I deplore this intensive focus on stigma. They will know that I am of the opinion that mentally ill people need food, shelter and access to the treatments we need, and that the problem of stigma ranks after all of these. This is not to say that stigma is not a problem at all, but it is to say that it is a relatively – I repeat, relatively – minor one.

I am frankly astonished that anyone can take the view that having to deal with insensitive, impolite and ill-informed attitudes amongst family, friends, employers and wider society is a worse problem than being forced into homelessness, or being unable to eat regularly, or not being able to get timely and effective treatment. I am firmly convinced that stigma only looms as the largest problem in the mind of someone who is not having to face anything worse. I am further convinced that these people are in a relatively – relatively – fortunate position, and ought not, in the current climate, be the primary focus of our efforts. The worst problems faced by the least fortunate people: that’s where I believe we should focus our efforts. I am aghast that Mind and Rethink Mental Illness, through their front organisation Time To Change, take a different view.

So it was for this reason that I was pleased to see that Mr Clegg’s speech treated stigma pretty much as preamble and conclusion, with the central section focussing on rather more substantive matters.

There was nothing on the effects of welfare cuts, of course – Mr Clegg and his Liberal Democrat colleagues voted for them in parliament, and presumably therefore consider the deaths and misery that have resulted a good thing, or at least acceptable collateral damage. There was also not much more than fine rhetoric on the problems of chronic underfunding in adult mental health services: much talk of targets and patient-satisfaction surveys, but little word on extra resources to hit those targets and improve patient satisfaction; much deploring of the fact that some people travel 100 miles for a bed, but no talk of the extra money that would be needed to (re)open more beds; and so on. And there was a typically politician-ish enthusiasm for bogus non-solutions like ‘choice’ – how can there possibly be a ‘choice’ for a mentally ill person when only one service-provider in their area can offer them an appointment, and that not for months?

But there was also a solid commitment to transitional arrangements to smooth the passage from teenage to adult mental health services, which has long been too much like falling off a cliff. Some of the problem there, too, is funding – an adult requiring out-patient care has even less spent on them than a young person, meaning that adult services are necessarily less intensive – but some is to do with the different ways of interacting with and accessing services. Transitional arrangements certainly have the potential to help with that second part of the problem.

There was also a commitment to increasing the inspection regime for mental health services, something that is sorely required – getting robust, reliable information on just how bad some services are is the unavoidable first step to improving them. Mental health services are the “cinderella” of the NHS in England, not because they are deliberately starved of money with wicked intent, but because nobody except the people who use them and provide them know how bad they are, and so there is little or no public pressure to make them better. It’s not stigma that’s the problem, but inattention.

You might assume, therefore, that the major mental health charities would have been all over this high-profile intervention by the deputy PM. Annoyed, of course, by the fact that the Rennard affair is sucking up what little interest there is in the actions of the Lib Dems, but still determined to use this as an opportunity to get the serious problems faced by mentally ill people into the news. And you know what, they have. As very prominently reported by the BBC, Time to Change – which is to say, Mind and Rethink Mental Illness – saw this as an opportunity to reveal another press release about, you’ve guessed it, stigma.

The survey – misreported as a poll by the BBC – that forms the basis of the press release isn’t actually worth the pixels it’s displayed with. As the very first footnote explains

1 The Time to Change survey was conducted online using SurveyMonkey between 11 December and 6January 2013 and was completed by a total of 4840 people in the UK with experience of a mental health problem. A link to the survey was distributed via Time to Change Facebook fans and on Twitter.

So that’s a self-selecting sample, which immediately undermines the validity of the finding – people who aren’t particularly bothered about stigma are less likely to voluntarily spend time filling in a questionnaire about stigma than people who agree it’s a problem. What’s worse, the survey was actively promoted to pre-existing social media fans of Time to Change – with the inevitable result that people who agree with that organisation about the pre-eminent importance of stigma will be disproportionately represented among the people taking the survey.

Given all this, the surprise isn’t that 58% of people taking the survey agreed that ‘stigma and discrimination was as bad or worse than the illness itself’. (Please also note that finding could be a mark of the relative mildness of the survey group’s symptoms just as easily as it could a mark of the relative seriousness of stigma.) The real surprise is that – even with a methodology all but guaranteed to overstate the significance of stigma – Time to Change could only persuade a third of their respondents to tell them that they had personally encountered stigma (and an undisclosed proportion of them reported encountering it as infrequently as 12 times a year).

Set aside for now the fact that an organisation which depends for its funding on the perception that stigma is a major problem has contrived to find evidence that stigma is a major problem. Concentrate instead on the fact that this was that rarest of events, a politician speaking seriously and substantively on at least one of the real, material problems that blights the lives of people with mental illness – the difficulty of accessing treatment. This was a chance to get that very real, very serious problem at least somewhere on the news agenda. There was a higher than average chance that people driven to desperate distraction by the impossibility of getting the help they need would be listened to, and taken seriously.

Except that Time to Change intervened.

Now, Time to Change are a lavishly well-funded organisation, to the extent that they can afford to run TV commercials pushing their point of view. Despite this, they evidently felt that they had to exploit this opportunity to waft yet more of the oxygen of publicity into their own lungs. In fact, so keen were they to ensure that news organisations would reflect their agenda, they followed a course of action which ensured those same news organisations would be less likely to talk about other problems that otherwise might have been naturally brought up by Mr Clegg’s comments. You know, problems like actively suicidal people being sent home from A&E without a proper psychiatric assessment, and people with florid psychosis being recommended to take a warm bath by a crisis team that is only contactable by phone, and that intermittently.

These kinds of people are, worse luck for them, at pretty much the bottom of the heap in all sorts of ways. They certainly don’t have TV adverts to express the difficulties they face, nor do they have multi-million-pound funding packages from the Department of Health (and if they did, they’d use them to fund actual services for mentally ill people). All they have is their own voices, and very occasional opportunities to get them heard – but only if they are not megaphoned into silence.

Official You Tube logo for Time to Change's latest ad campaign

Official You Tube logo for Time to Change’s latest ad campaign

One of the reasons people with mental health problems have a hard time of it is that the most vulnerable amongst us are disproportionately dependent on public services that are catastrophically underfunded. And one of the reasons public services for mentally ill people are catastrophically underfunded is that sympathetic but uninformed members of the public have no real idea how bad they are. And one of the reasons the public have no idea how bad they are is that they never get to hear how bad they are. And a major reason they never get to hear about it is that, whenever people with first-hand experience try to talk about it, they are drowned out by luxuriously well-funded anti-stigma campaigners.

Stigma is unpleasant and undesirable, for sure. It’s one of the factors that makes people reluctant to seek help for mental health problems (though it’s far from being the only factor), and it damages both the life chances and quality of life of people with a mental illness. All of this is true, and none of it changes the fact that stigma is a relatively – relatively – minor problem when set against the far greater difficulties faced by people who can’t get access to food, shelter and essential, life-saving treatment. If we are to fix these objectively worse problems, we need public attention to be paid to them, and this is not possible while the public is being incessantly distracted with talk of stigma instead.

This is how the major mental health charities work against the interests of mentally ill people. (Remember that, despite the name, Time to Change is really Mind and Rethink Mental Illness, two of the largest mental health charities in the UK.) I’m prepared to believe that they do what they do with the very best of intentions, motivated by a sincere desire to help those of us with mental illness to feel less alone and marginalised, and to lead richer, fuller lives as a result. But by concentrating on the relatively – relatively – minor problem of stigma, they unavoidably relegate other, worse problems to obscurity, where they fester endlessly on, unobserved.

Start with the worst problems faced by the least fortunate people: that should be our watchword, and it should be the watchword of those charities, too. Sadly, it seems that it is currently the watchword of only one of them, SANE:

There can be no parity between the treatment of mentally and physically ill people while the person taken to hospital suffering from a diabetic coma or physical injury would be found a bed and given treatment, yet a person who may be suffering unendurable mental pain and could be harming themselves or at risk of taking their own life, is not admitted because of the lack of beds and may then have to be driven hundreds of miles across the country to receive treatment or be found the only ‘safe place’ in a police cell.

While we continue to close down psychiatric beds and the need and demand for psychiatric services increases, mentally ill people will remain in the shadows.

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