The chronic underfunding of mental health care is a stigma proving hard to reverse

This article has also been published by Community Care and can be found here.

The pain, incapacity and losses involved in being ill can pose the biggest challenge many of us will ever face, but if your illness happens to be mental, the associated stigma is often what hurts the most.

This discrimination can take many forms. Recent high-profile examples of stigma being peddled by the media and elsewhere show that we’re actually seizing the opportunity to counter attack some forms of discrimination on the public stage.

Tackling high-profile stigma

Take the response to The Sun’s vile ‘1,200 killed by mental patients’ headline. Mental health charities stood on the shoulders of the misleading headline’s bigotry to provide context – that people with mental illness are five times more likely to be assaulted than average and more than 50 times more likely to kill themselves than someone else. Though The Sun’s eventual “apology”, a small clarification buried inside the newspaper, was cowardly, no newspaper will be publishing a similar headline again soon.

Likewise, Tesco and Asda were forced to withdraw offensive ‘mental patient’ fancy dress costumes after triggering a large-scale public backlash which showed that mental illness is not for anyone’s amusement anymore. Overall, that was a good day for mental health.

Granted, the victories aren’t always instant. Thorpe Park showed staggering ineptitude and insensitivity in defying calls to close or rename its offensive ‘Asylum’ attraction (where customers are chased by ‘patients’) despite a petition backed by over 5,000 signatories and a collection of mental health bodies.

Clearly the park is better at building rollercoasters than gauging public opinion, but ultimately, opposition to the attraction will continue to grow exponentially. Eventually I believe the theme park will cede their position along with a significant chunk of their reputation and through their ignorance they will have given mental health some valuable publicity.

The problem of chronic underfunding

These glaring examples are an important sign that superficial shows of stigma perpetrated in the public eye can, ultimately, be used by us to combat discrimination. Yet there is a very different, pervasive factor driving stigma that is proving harder to combat – namely the chronic lack of resources for mental health services that would be an embarrassment in any other area of health and social care.

Mental illness accounts for 23% of the total illness burden in the UK, but receives only 13% of NHS funding (added to the fact that investment in mental health has fallen in real terms for two consecutive years). Services have been so conditioned to receive barely half of what our patients deserve that we don’t even realise what a travesty it is. We’ve just learnt to put up with it.

Couple this with a pressured economic climate that is driving a growing demand for care and you’re left with a widespread crisis.

We learnt recently that nine per cent of all psychiatric beds in the UK have been closed in the past two years – more than 1,700 beds – despite rising demand. These pressures mean that the remaining NHS psychiatric wards are running at 101% occupancy – way above the recommended 85% level, with some individual wards running at up to 138% occupancy.

The pressure on beds means that, daily, doctors like myself and other mental health professionals are forced in desperation to send patients hundreds of miles away from their families to find a bed, often to private hospitals that are making millions of pounds a year from the arrangements. To someone in the depths of crisis, being sent so far from home can feel like exile, not care.

I’ve also heard of patients having to sleep on ward sofas or camp beds due to a lack of beds. Such poor care would be unthinkable in any other branch of the 21st century NHS. Even worse, in some instances, patients in crisis have been turned away from inpatient units to face their illness at home, sometimes with tragic consequences.

A crisis that demands action

In any other speciality this crisis would be worthy of front page media coverage and meaningful action by the government. Instead, all I hear of from colleagues up and down the country is talk of more cuts. This month, frontline staff in Norfolk and Suffolk have started a campaign against planned ‘cost-savings’ that they say will lead to a 20% cut in beds and caseloads rising to levels that will make safe care impossible.

When beds are closed, we’re often told that the cost savings will be invested in community teams. Yet whatever investment in community services is happening, it isn’t stemming the increase in demand for crisis care – Mental Health Act detentions topped 50,000 for the first time in 2012/13. It feels like the pressure on beds is forcing the premature of discharge of patients who simply relapse in the hands of overwhelmed community teams.

The ‘institutional bias’ against mental health in the NHS, as the care minister Norman Lamb eruditely calls it, is no less apparent in outpatient care.

The government didn’t include mental health when they decreed that 18 weeks was the deadline for seeing a consultant, making psychiatric waiting lists a low priority for commissioners. And despite the fact that depression affects two to 10 per cent of us at any one time and costs the UK nine billion pounds a year in lost productivity, access to talking therapies remains limited. Official figures show only a third of areas are meeting their 28 day target, leaving 80,000 people still waiting – many for over a year.

Trying to reduce the stigma surrounding mental illness while grossly underfunding psychiatric services during a time of growing demand is like asking children to play nicely but dressing one of them in rags.

How can we announce that mental illness is worthy of equal respect, care and understanding, when the meagre resources allocated to services by those in control of budgets perpetuate the notion that mental health care is less deserving, an optional extra that can muddle along on a pittance?

If mental health was funded as deservingly as physical health, maybe people would start treating it as such.

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Why mental health bed cuts make me ashamed to work for the NHS

This is a piece I wrote for The Guardian, published earlier this week, about the mental health bed crisis. I’m pleased to say that the piece appears to have kept the issue in the public consciousness for a little while longer – here’s hoping it helps.

You can of course also read it on The Guardian website, here.

Imagine that a family member becomes critically unwell. You anxiously accompany them to A&E and the opinion of the doctor is clear – an emergency hospital admission is needed to avoid potentially devastating consequences. But unfortunately, says the doctor, the hospital happens to be full. And so are all the other local hospitals. So either your relative can take a trip to a private hospital in a town more than 200 miles away for their life-saving treatment, or you can take them home and have a go at nursing them yourself.

Surely if this ever happened, people would notice. But it does happen, every single day. It seems to be acceptable because the illnesses are psychiatric.

The profound suffering of people who attend A&E with psychiatric issues is almost impossible to underestimate. Be it the suicidal despair of depression, the terror of paranoia and hearing persecutory voices or the exhausting disinhibition of mania, mental illness is unconditionally deserving of the same level of comprehensive care as a physical ailment. But when somebody with a mental health problem needs to be admitted, doctors like me have to ring the bed manager and cross our fingers.

Too often my luck is out and I am forced to have a torturous conversation with a patient and their relatives about why they will need to sit in the back of an ambulance for four hours to get a resource as straightforward as a bed when they live 10 minutes from a psychiatric hospital. To go through this would be hard enough if you had a routine medical problem, but to our patients it feels like purgatory. They are at their most vulnerable and need care and attention, but what they actually get is exile. I had never felt ashamed to work for the NHS before I worked in these situations, but now a sense of pride is hard to come by.

A health select committee report published in August gave a clear indication that the lack of beds had become dangerous and that some doctors had started to section patients, who wouldn’t usually be regarded as unwell enough to fulfil the criteria, because that is the only way to force the provision of a bed. And an investigation by the BBC and Community Care magazine last week cast an even more detailed and human light upon the tragedy affecting those who need inpatient psychiatric care. Based on freedom of information requests, the bed occupancy of 28 mental health trusts in England and Wales was found to average 101%, far above the advised level of 85%, with some individual wards found to be running at an astonishing 138% capacity. The root of these startling and seemingly impossible figures is the practice of being forced to admit patients to a ward and into a bed belonging to a patient who is on a short trial period of home leave or, even worse, being forced to admit patients with no bed being available for them at all. It doesn’t take much effort to find someone who has had to sleep on a ward sofa – would this be acceptable for someone with a physical health problem?

The Victorian-style overcrowding sounds bad enough, but the alternative – being turned away – can be even more damaging. One patient, Lucy Bowden, reported how she wandered around the grounds of her emergency department until the police picked her up, locked her in their van and used an emergency section of the Mental Health Act to make finding a bed a legal necessity. Another, Mandy Peck, jumped to her death a day after being told that there were no beds available to ensure her safety. These instances are just the tip of a very disturbing and shaming iceberg.

The parity of esteem between physical and mental health endorsed this summer by this government reflects neither their decisions, nor how we react to them. When Jeremy Hunt drew the downgrading of Lewisham A&E out of his tombola of terrible decisions, there was uproar; televised marches and petitions signed thousand-fold. Yet between 2011 and 2012, we lost at least 1,711 psychiatric beds. That’s roughly 80 individual wards, or 9% of our beds. Astonishingly the closures continue, and our “ringfenced” budget has been cut for a second consecutive year. Yet hardly a whisper.

Reducing the number of psychiatric beds comes with a built-in spin mechanism: “we’re moving further towards care in the community”. What was long ago the laudable endeavour of a new psychiatry, chiming the death knell of the asylums, has since been hijacked as a mitigating tagline for a detrimental and bafflingly flawed reallocation in services. As part of “care in the community”, we somehow manage to pay private hospitals £25m a year by outsourcing psychiatric admissions because our own NHS beds are full – a rise of 32% in the last year alone.

As misguided and reprehensible as the practice of sectioning patients to get a bed may be, the very fact that doctors are endangering their careers to obtain a resource as basic as an admission to hospital should not be lost on those that criticise their professional conduct.

The select committee highlighted that community treatment orders (CTOs), introduced in England and Wales in 2007, appear to have done nothing to ease the pressure on beds. The Department of Health had estimated that 10% of patients on long-term inpatient sections would be diverted to CTOs, allowing them to continue their coercive treatment out of hospital. This was an interesting prediction, considering that a review funded by the DH noted that international research had consistently shown CTOs to be ineffective in preventing readmission to hospital. The number of sections has actually increased from 42,208 in 2008-09 to 44,894 by 2011-12, and a further large research trial of CTOs has all but confirmed their uselessness. CTOs grant psychiatrists just one power, in essence, to order a patient to return to hospital if they stop taking their medication or otherwise deteriorate. In practice this is barely easier than simply sectioning the patient again, so it is not hard to see why a growing band of detractors view CTOs as little more than a toothless appeasement to distract us from bed closures with more “care in the community”. Their administrative upkeep and paternalistic ethos create a futile sinkhole for time, money and, far more importantly, patient liberty.

Let’s be clear about this – psychiatric patients are among the most vulnerable that the NHS sees. They are a soft target for cuts. The very nature of mental illness makes it difficult for our patients to maintain supportive relationships and fight against the theft of the resources they need and deserve. To our discredit, we don’t support them enough to speak up or listen closely enough when they do.

I make no apologies for directly comparing standards of care in physical and mental health. If this were physical health, there would be outrage.

The Casual Stigma Test

We’ve had a lot of very public casual stigma recently. Firstly those hideous fancy dress costumes of “mental patients”, then Miley Cyrus casually dismissing Sinead O’Connor’s heartfelt advice as the result of her mental illness.

Thankfully, the vast majority of folks seem to get why this kind of thing is deeply offensive to people with mental health issues and why it sets us back decades on the road to a parity of esteem with other health problems.

 Unfortunately, some people didn’t get why we were insulted. They either didn’t care or worse, found it funny. To them, I suggest that in future when they’re considering whether something about mental health is in good taste, fair, or accurate, use this rule:

 Replace the mental health word with a word to do with being physically ill or to do with another minority group.

Let’s take those “mental patient” costumes for example. Some thought they were “just a bit of fun”. But if you just replace the word “mental” with something that’s been in the public consciousness as unacceptable to attack for a while, all suddenly becomes clear.

“Gay person costume”

or

“Black person costume”

Not so fun anymore is it? Because we realise that it’s deeply offensive to those groups. And anyway – when has the fact that some people find something fun make it morally okay?

Others said that the costumes were fine because everyone knew that real mental health patients weren’t like that. But that’s the point.  We don’t have costumes of mincing, camp gay people or sugar cane-farming, harmonica playing black people, because those groups find it horrifically insulting to be seen in those denigrating stereotypical ways – they spend their lives fighting against it.

How about the Miley Cyrus debacle? If you’ve not already heard (I needed some education here) Miley Cyrus is a young American singer who stated recently that she’d used one of Sinead O’Connor’s old videos as an inspiration for one of her own. O’Connor sent her an open letter thanking her, but also warning her about being abused by the music industry, based on her own decades of experience and suffering. Cyrus responded by sending a tweet mocking O’Connor’s past struggles with bipolar disorder as if they somehow encompassed everything about her and devalued her advice.

Yet no public outcry or apology. But what if Cyrus had been mocking O’Connor’s past struggles with a physical illness?

“No way I’m listening to your advice – you had cancer”

“Get away from me – you’ve got HIV”

We wouldn’t have been surprised to see her dropped by her record company amid an outpouring of anger. But because it’s just mental illness, nothing happened.

Though mental illness is obviously different to physical illness in many ways, two things that aren’t different are the amount people are to blame for getting it and what it says about their character. So if you’re ever going to cast judgement on someone in those ways, just take a second to check if it passes the test:

“How could they be so selfish and commit suicide?”

“How could a nice guy like him get schizophrenia?”

become:

“How could he be so selfish and die of a stroke?”

“How could a nice guy like him get diabetes?”

My final point is about descriptors. The content of this article in The Telegraph, about homicides in schizophrenia, is very interesting – but I only want to concentrate on its use of the words “psychotics” and “schizophrenics” to describe people with psychotic illnesses.

This easily fails the test of replacing the word with one from another type of minority:

“Gays”

“The disabled”

“Epileptics”

People are more than their mental illness. They should not be defined by it or reduced to it. The degree to which people with mental illness want to identify with it is varied – some are happy to see it as part of themselves – but none are only their illness. This was realised decades ago in other fields and the fact we still have to point it out about mental health says somethiing profound about how far behind we are in terms of equality.

Until casually stigmatising mental illness is as unacceptable as casually stigmatising any other minority or disempowered group, we have some work to do. If something fails the casual stigma test, point it out.

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