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Sapphire research programme

Talking to Prof Graham Thornicroft

What led you to become interested in stigma and discrimination?

It began with a growing awareness that working in mental health is not the same as, for example, working in the area of diabetes medicine or hypertension. There is a type of embarrassment, sometimes a reluctance to seek help, a type of shame that attaches itself to a lot of aspects of mental healthcare, and that these affect many people with mental health problems, often in serious ways that exclude people from society.  So I wanted to understand that better and to be in a position to reduce stigma and discrimination based on evidence of what works.

You have used the terms stigma and discrimination, what do you mean by these terms?

I find stigma a rather unhelpful word, first because it is quite vague, second because it doesn’t directly lead us to action.  I think of stigma as a general term containing three different things: first the problem of knowledge, meaning that many people in the general public have relatively little knowledge about mental health problems and quite a lot of that knowledge is wrong. So that is a mixture of ignorance and misinformation. Second is the problem of emotions in that many of us have strong and often negative feelings towards people with mental health problems, namely prejudice. Third is our behaviour, in that we reject and exclude people with mental illness, and that is discrimination.

The term discrimination is increasingly being used—why is this?

Well, of the three parts of stigma I think that discrimination is the most important because it is this that keeps people out of work, it is this that often means that people with mental health problems are socially rejected, become socially isolated, lose confidence and self-esteem and are marginalised in society.

Why did SAPPHIRE investigate access to mental health care?

One of the implications of stigma and discrimination is, understandably, that people who think they may have mental health difficulties are reluctant to seek help because they fear being given a diagnosis that would damage their reputation.  So they may believe that even if treatment is available, it would not be worth it, because they would not want to be known as a person with mental health problems.  So I think this is a major barrier to people getting help and treatment. People often choose not to go for help when they begin to have mental health problems, or even sometimes after having these problems for years. They still actively avoid going for help for the reasons I have just mentioned.

And why employment?

We know from research that employment is one area of life where people with mental health problems face considerable discrimination. For example, we have just finished a big study of nearly 800 people in 27 countries to ask people with schizophrenia about discrimination, and one of the most common areas in which people feel they are treated unfairly is in getting and keeping work.

SAPPHIRE also looked at the provision of physical healthcare—do you think that people with mental illness lose out here?

Undoubtedly.  There is now strong evidence for something that is often called ‘diagnostic overshadowing’.  What this means is the situation where, for example, you are in physical pain and because staff know that you have mental health problems they take the pains less seriously, investigate them less fully, and give less active treatment for them.  They may say that this is all in your mind, or part of your psychiatric condition. Now these are not trivial issues. A big study in the States found that people who had heart attacks, who also had mental illness, died more often because they were not treated as well.

SAPPHIRE was an applied programme of research—what does that mean and why is that important?

Wellwe  were delighted that the National Institute for Health Research awarded us a substantial grant to strengthen research in this area. Unfortunately we had to start almost from scratch because we didn’t have many good scales to assess stigma and discrimination so we were creating these.  

Secondly we didn’t have good information about just how common and severe stigma and discrimination are, for example in the whole population or in different minority ethnic groups, so we had to undertake research of that type.  

And third, we didn’t have information about what to do for the best, to reduce stigma and discrimination and so we also undertook intervention studies. Our previous work with school children, police officers and medical students was based on a simple but effective idea called social contact theory. This means that the best way of reducing stigma is to get somebody in the stigmatized group to interact directly to explain their situation and share their experiences, and this can have a very powerful stigma-reducing effect.  

In SAPPHIRE we wanted to discover if this effect could also work when people talk about their experiences on DVD rather than ‘live’, since arranging this on a large scale would be an enormously big task.  If DVDs can work we will have discovered something important, namely a method of scaling up to the population-level an active anti-stigma intervention.

What did you do to disseminate this work?

We are actively spreading information about our research all the time.  We arranged a large international conference to bring together people from across the world to cross-fertilise ideas and share the latest findings. So our work is not only part of a network in Britain but also part of an international network. Unfortunately it is true that, as far as we understand it at this stage, discrimination is common and severe everywhere in the world where this has been assessed.  And although we have seen improvements in relation to people with HIV, cancer and leprosy, there is no evidence that mental health-related stigma has changed in recent years.  So there is no doubt that the results of SAPPHIRE are highly relevant to many countries worldwide.

Are you optimistic that one day we will see an end to prejudice and discrimination against people with mental ill health?

Well, that would be wonderful!  It will take time, as experience in physical disability has shown where, for example, the widespread introduction of tapered curbs took 10-15 years of sustained campaigning  by advocacy groups. I do think that major reductions in prejudice and discrimination can be made so long as  we strengthen the evidence base, if we implement interventions based upon the evidence, and if we have the political and financial will to do so.

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