Stigma - is enough being done?

I was recently asked to speak in a debate about stigma at a forensic psychiatry event organised by NHS Greater Glasgow and Clyde. The motion that I and long term collaborator and Glasgow champion of mental health improvement, Trevor Lakey, were asked to speak against went something along these lines...

‘The existence of stigma associated with mental health conditions is undeniable and would on the face of it seem an especially problematic issue in forensic mental health populations. However, enough is currently being done to tackle this issue, allowing forensic mental health patients, discharged from hospitals, to enjoy a good quality of life in the communities they live in’.

Thankfully Trevor and I were speaking against this motion because on first reading at least it seems fairly indefensible. There was an initial show of hands which did indeed suggest a large majority of the audience disagreed with the motion. I like to think the fact this majority was drastically by the end of the debate says more about the debating skills of our opponents than our weak arguments!

I can certainly attest to the excellent points made by my colleague Trevor. He reminded us of the need to challenge stigma as a society and to be wary of blaming individuals or organisations for a lack of progress. Stigma and discrimination toward people with mental health problems are so deep seated that we need to genuinely share responsibility for addressing it.

He also drew on evidence from the world of contemporary politics and neuroscience to explain why it might be so difficult to make progress against mental health stigma, a long standing social problem that has proved stubbornly hard to change. In essence facts are not enough to change deeply ingrained attitudes. We can do as much myth busting or reasoning as we like but neuroscience suggests that an inbuilt confirmation bias means humans are especially adept at rejecting information which does not fit our preexisting beliefs.

In my contribution, which I've included in full below, I describe some of the research on stigma in forensic settings and ask whether efforts to reduce public stigma and discrimination have been aimed at the 'low lying fruit', limiting their impact for people in forensic settings who contend with multiple and complex stigmas.

I'm conscious this is difficult territory and that I certainly don't have all the answers so I'd be very interested in any feedback or comments, particularly from people who've been personally affected by stigma.

I’m delighted to have been invited here today to speak against this motion. I am a researcher at the University of Glasgow with interests in recovery, self management, peer support and most relevant to today’s debate, stigma. My PhD was an examination of internal stigma looking specifically at the role of relationships and attachment style in determining responses to stigma. I also bring previous experience of being the Scottish Recovery Network Director for twelve years.

Firstly, I was relieved to have been asked to speak against the motion today because it is one I would struggle to defend. The motion states that ‘on the face’ of it stigma is an obvious challenge for people in receipt of forensic services. I hope to show that we can be a lot more confident in our assertions about the impact of stigma. I do though need to start with a researcher’s caveat (which is perhaps not traditional for a combative debater) and that is the evidence base on stigma in relation to people with experience of forensic services is limited. I would argue though that this in itself may be an iteration of the very problem we are here today to debate - and that is stigma.

I will also argue against the motions proposition that enough is already being done to address stigma to allow people with forensic histories to enjoy a good quality of life in the community. Given the scale of stigma and discrimination related to mental health problems enough is certainly not being done but I hope to show that it is not just a question of scale (that’s the is enough being done bit) but it’s also a question of whether what is being done is directly beneficial to people with experiences of forensic services. People who are, after all, subject to not one set of public stigmas and prejudices but two.

Before I turn to those matters, another aspect of the motion that renders it indefensible is the implication that forensic patients enjoy a good quality of life in the community. Sadly, widespread evidence suggests that people with enduring mental health problems have a significantly poorer quality of life than the general population. They are more prone to loneliness and isolation and at higher risk of suicide and early death. They also experience shocking levels of unemployment and are faced with what the Mental Welfare Commission has characterised as a lack of ambition in service responses. I’d put it more bluntly and suggest some people are little more than being maintained by hard pressed community services, with risk management prioritised over quality of life and recovery.

We must not assume that the ‘community’ is necessarily an oasis of opportunity and tolerance for people leaving inpatient services. In a 2010 Dutch study there was no improvement in nine out of ten indicators of quality of life for a group of forensic patients leaving inpatient services. The researchers also found that those who had a high quality of life scores as inpatients had significantly poorer scores six months later in the community. 

Linked to these findings a number of studies have found that people in inpatient services report less stigma than those in community settings. Margetic and colleagues talk about the micro-environment of the forensic ward - a relatively safe space where people are all to some extent at least ‘in it together.’ What happens when people leave that relatively stigma free environment can be very different.

On stigma

Stigma was originally defined by Erving Goffman as an “attribute that is deeply discrediting” which turns a person from “a whole and usual person to a tainted, discounted one.” It involves, said Goffman, the co-occurrence of labelling, stereotyping and group separation.

Link and Phelan developed Goffman’s conception of stigma showing importantly that it exists in the presence of power imbalances. A salient example of a stigma related power imbalance for this debate is where a group of people are subject to restrictions on their liberty by virtue of the risk they pose to other people or to themselves.

There are three main forms of mental health stigma described in academic literature. Public or societal stigma relates to the stigmatising views and behaviours of the general public towards people affected by mental health problems. Think for example of the rampant nimbyism that rears its ugly head whenever there is a new planning application for secure services. 

Internal or self-stigma has been described as the psychological point of impact of societal stigma. It’s about the extent to which public stigma is internalised by people affected by mental health problems and is associated with a broad range of negative outcomes. It’s where the real damage is done but also potentially where solutions may be found.

Finally, structural stigma relates to the policies and practices of public or private bodies that intentionally or otherwise discriminate against people affected by mental health problems.

As this slide demonstrates public and structural stigma are very much alive and variously shared and generated by our media, major retailers and indeed our very own Westminster government.

Stigma is of course not restricted to mental health. Other marginalised groups are also subject to stigma, including people living in poverty, people with alcohol or drug related problems and people with a history of criminal justice involvement. 

We are also increasingly clear from research that there can be what is known as an intersectionality of stigmas, whereby having a number of different marginalised identities can lead to particularly severe and pernicious forms of exclusion. This compounding effect is of course highly relevant to our discussion today.

Stigma is a relational phenomenon. The content of interpersonal interactions or the anticipation of how other people will behave in those interactions to a large extent determines our experiences of and responses to stigma. If I am exposed to directly stigmatising views or to discrimination on the grounds of my identity then that is likely to affects how I interact with the world. But it’s not just experienced stigma and discrimination which are harmful. We now much more clearly understand that the anticipation of stigma is more common and if anything more damaging than actual experienced stigma and discrimination.

If I try and get involved in this group then they’re all going to know about me and the things I’ve done – it’ll be easier just not to bother. Stigma researcher Pat Corrigan has referred to this vicious cycle of life limiting as the “why try effect.”

But, according to an editorial in Lancet Psychiatry, mental health stigma is not only an interpersonal issue: it is also represents what they describe as “a health crisis.” Individuals with serious mental illness die decades earlier than they should, driven not by increased suicides or injuries but by poor physical health. Here we are back to structural stigma and discrimination. 

I’m thinking of the forensic inpatient denied access to a GP because they have been placed ‘out of area’ (also known as ‘that’s where there were beds’). I’m thinking of the people with serious mental health problems being routinely denied their right to regular and much needed physical health checks. I’m thinking of the terrible take up of potentially lifesaving statins by people in Scotland with serious mental health conditions. I’m also thinking of people whose physical health conditions are ignored because they are essentially not believed (what we euphemistically refer to as diagnostic overshadowing). 

Stigma in forensic settings

But are experiences of stigma qualitatively different between people with experience of serious mental health problems in forensic and non-forensic settings? 

A 2011 Canadian study by Livingston and colleagues was unique in that it compared experiences of internalised stigma between forensic and non-forensic groups (with both groups subject to some form of community treatment order). While internalised stigma was identified as a problem in both groups, counter to expectations, there was no statistically significant difference in stigma levels between the groups.

The qualitative findings suggested a more complex picture and showed the value of applying mixed methods when studying stigma. There were suggestions, for example, that what was described as the "Cadillac forensic service" led to fewer unmet needs and fewer service barriers than faced by those in receipt of standard community services. 

The tricky negotiation of access to community resources may also be more likely to be handled by mental health professionals in forensic settings, rather than by people using services themselves. This can mean those same professionals acting as a buffer against stigmatising attitudes in wider public services. The effect of being a stigma buffer on staff in forensic services is perhaps for a future study. 

The authors conclude that, in line with the intersectionality approach, the forensic label may have an “an interlocking, rather than additive, effect.” A further study also attests to this interlocking of stigmatized identities. 

Michelle West and colleagues found most participants in their study had painful experiences of stigma related to their mental health and forensic histories. They also found that people who a reported a vaguer self-image were more likely to internalise both mental health and criminal justice stigma, hindering recovery. 

Their findings suggested that people who are able to be self-reflective may be more able to protect themselves against the internalisation of multiple stigmatised identities so there are seeming opportunities here for interventions - an attractive proposition given the range of negative outcomes associated with internalising stigma.

However, while there may be real benefits to better identifying people who may be prone to the negative effects of stigma (particularly given we are not all affected in the same way by wider stigma), there are also risks associated with interventions to address stigma at an individual level. We may find ourselves seeking to ‘fix a problem’ in the very people who are victims of public ignorance and prejudice? Something akin to training women to avoid sexual harassment. As stigma researcher Pat Corrigan has stated: “internalised stigma is not a problem that is located within the individual patient but an understandable reaction to a social injustice.”

Stigma is ultimately a societal problem and without the public stereotyping of marginalised groups there would be nothing to internalise. It is therefore imperative that we continue to improve public attitudes towards people affected by mental health problems with a particular focus on intersectionality.

We also need to think more broadly. We know from Scottish research, commissioned by Support in Mind, that family carers of people in forensic services also feel subject to stigma through association. A stigma that was shown to hinder help seeking and to feed social isolation. 

Enough is already being done

I’d like to close by turning to the motions’ suggestion that enough is already being done to challenge stigma.

Firstly, I think it is fair to say that delving into the complexities of mental health problems, risk and violence is not something your average anti-stigma campaign planner relishes. People are, after all, are far more likely to relate to others affected by common mental health problems than they are with the tiny proportions who become involved with compulsory treatments, let alone forensic services.

A google site search of the See Me anti stigma campaigns website, using the the search term ‘forensic’ shows us that with the exception of sharing reports on rights based work at the State Hospital the word is only really used as an adjective. I’m certainly not having a dig at ‘see me’ here, a similar search on the ‘Time to change’ website was only slightly more productive. This is really tricky stuff to factor into anti stigma work. I do though wonder if in focusing on certain aspects of mental distress and its consequences whether we unwittingly allow doubts to linger in the minds of the public about the sincerity of messages being conveyed. 

How do public stigma messages that seek to debunk ‘mental health myths’ of violence and dangerousness play in the context of forensic services. While we know that people with a schizophrenia diagnosis, for example, are more likely to be victims of violence than to be perpetrators, we also know that they are in fact also more likely to be violent than the general population. From the general public’s perspective if there is a need for forensic services to exist then surely there must be something in all this stuff about mental health problems and dangerousness? Doubts and questions linger.

These are challenging areas to communicate to the public but I’d argue that we run the risk of causing confusion if in our attempts to debunk myths we only share part of the story. Honestly and openly discussing the fact that some people are a risk to themselves or to other people as a result of their mental health is part of having a public that is fully mental health literate. 

Simplistic soundbites won’t cut it if we are to have this more fully formed public discussion. Enough of mental illness as an illness like any other. Enough of just reach out and talk to someone – just reach out and ask for help. 

Let’s move to a more honest and fuller narrative. 

• Let’s acknowledge that mental distress is a complex and messy business and that we actually know very little about the causes and cures.
• Let’s acknowledge that living with mental health problems is massively debilitating and that its effects are widespread.
• Let’s acknowledge that there are risks, that people get hurt in all this. 

But let’s also acknowledge the deep seated shame people often experience as a result of the things they have done and said to other people, about the dark thoughts they have harboured about those closest to them. In short let’s acknowledge this is NOT an illness like any other.

At the same time though we must remember that there are things we can all do as a society to help people experiencing mental distress. Our attitudes towards other people and our ability to be compassionate matter deeply.

And finally, let’s acknowledge above all else that people can and do recover from even the most serious mental health problems and that we must never lose hope for recovery.

In conclusion I agree with Pat Corrigan’s assessment that mental health stigma is a social justice issue. As such real change must be led and informed by the people who are subject to that injustice, fuelled by a good dose of righteous anger. 

While we have made great strides in reducing stigma and raising mental health awareness there is a still a considerable way to go. We may have been picking the proverbial low-lying fruit. It’s now time now to really open up. Yes it’s good to talk but that means telling the whole story.