Where there is a will, there is a way to beat stigma

This post is the fifth and final entry in a series of posts reporting on the World Psychiatric Association (WPA) International Congress 2016, which I attended in Cape Town in November.

There is no country in the world, rich or poor, in which anti-stigma programmes related to mental illnesses won’t succeed if there is the will to do so and if a few basic lessons are adhered to, according to former WPA President Professor Norman Sartorius, speaking at the WPA Congress in 2016.

During his session, titled The Stigma of Mental Illness – End of the Story?, Professor Sartorius shared the lessons he has learned over thirty years as a founding member of the anti-stigma movement.

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Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

Professor Sartorius said many programmes against stigma had been developed worldwide, including the Open the Doors programme developed by the WPA and the INDIGO programme. Major national, regional and provincial programmes had also been set up.

The most important lesson of all, he said, was that “anti-stigma programmes must start with a self-examination of those who will lead the programme.
“If their prejudices are not dealt with, the programme could lose credibility,” he said.

When selecting priorities for a programme, Professor Sartorius recommended that three criteria should be applied, namely:

  1. Do people with mental illness and their families see this area as a problem for them?
  2. Is it likely that the project will be a success?
  3. Does the work require planning over the time horizon?

“For instance, in Canada, we asked patients first, ‘What is it that disturbs you the most?’
They said, ‘What really disturbs us is when a doctor or hospital treats us like dirt…’. So we went to hospitals in Calgary to observe and interview the staff. Many of the doctors weren’t aware that they were seen that way. We talked to them and tried to change their attitudes.
“Six months later, the people with mental illness said this was the first time anyone had asked them what was needed to make their lives better.”

Professor Sartorius said another key lesson when setting up anti-stigma programmes was to “Choose the one that will be successful, or else people get fed up”.
He also advised, “Do not make plans further than you can foresee, for example if there is going to be a change of government.”

While overall rules for the programme are useful, the professor emphasised that flexibility is needed to make the most of opportunities that may arise.

Further important takeaways learnt from his research were that:

  • The key to success is the existence of a small group of dedicated workers who will stay with the programme for at least five years, with a likeable, charismatic leader and team.
  • Campaigns are useful only if they are intensifications of steady, continuous work on stigma. “Isolated campaigns are likely to be experienced as useless or harmful by those most concerned. For example, a one-year campaign in Sweden failed … Programmes must carry on into the future.”
  • The scientific evaluation of whether the attitudes to people with mental illness have changed should rely on changes in the behaviour of all concerned.
  • Programmes against stigma should address, and be tailored for, well-defined groups of people. “A programme addressed to a policeman will be different from one for teachers or judges. Sharp focus is important.”
  • Simply providing knowledge does not reduce stigma. Additional knowledge can increase stigma because of selective perception processes. “Training in specific skills in relationships with mentally ill people should be offered.”

Professor Sartorius said it is important to bear in mind that help and support to programs often comes from unexpected sources. “There is much good will that is never used because nobody asked for it.”

The previous post in this series covered creative ways of caring for mental health patients. My other reports from the WPA include ideas for psychiatrists to break down the walls of racism and discrimination present in mental healthcare in South Africa. Other posts discussed psychiatrists’ implicit contract with society, as well as African Union Commission Chair Nkosazana Dlamini-Zuma’s address at the opening ceremony of the WPA Congress, in which she called for international organisations to place more emphasis on mental health funding and activism.

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Creative care for mental health patients

This post is the fourth in a series of posts reporting on the World Psychiatric Association (WPA) International Congress 2016, which I attended in Cape Town in November.

When Promise co-founder Dr Manaan Kar Ray was punched in the face in 2006 by a patient with whom he believed he had a good rapport, he found himself ashamed, mentally exhausted, and anxious about doing his job.

A second incident, in which a patient smashed a glass ashtray against a wall and chased him down the corridor, exacerbated his stress.

Today, years later, he has acknowledged the assault and the subsequent reflection provided him with a different frame of reference as to how mentally ill patients viewed the use of restraints in their treatment and whether, in their eyes, this constituted unprovoked violence.

Dr Kar Ray spoke at the WPA Congress. Together with Expert by Experience Sarah Rae, he created Promise, a proactive care initiative aimed at seeking out and embracing new ideas and, in the interests of patient-centred care, working to develop compassionate and creative alternatives for the care of patients with mental illness.

This was inspired by 2013 research that found huge variation in the use of restraint across England, with one centre reporting 38 incidents and another more than 3,000. There were also concerns about the face-down, or “prone” restraint method, plus related injuries, which numbered more than 1,000 in a single year.

Kar Ray, also a consultant psychiatrist at Fulbourn Hospital in Cambridge in the UK, pointed out that the use of mechanical constraints was commonplace in Europe and the developing world, and that he was sure “we can do better than this”.

“Our vision for Promise is to promote dignity by eliminating coercion in mental health. We need to have the courage to challenge the status quo, and not accept that because things have been this way for a long time, we should carry on this way,” he told delegates attending the congress.

Promise started with five founding members, are now thirty strong, and are constantly attracting more people keen on sharing and celebrating good practice. For caregivers, Kar Ray stressed that Promise’s message was clear: “We must contain the situation to keep patients and caregivers safe. But every time we lay hands on a patient is an opportunity for us to think whether there was something better we could have done upstream, ahead of the situation developing. If we can enhance the patient experience, maybe those situations don’t necessarily have to happen in the first place,” he said.

The Cape Town Promise Charter was signed following the session, and Kar Ray said this would help raise questions here, too, about whether restraint was indeed a necessity in the care of people who are mentally ill.

“Perhaps it’s not a necessary evil. Perhaps we are just stuck in the limitations of the past. And perhaps we need to shift out of that mindset, into a future full of possibilities,” he said.

The previous post in this series covered how psychiatrists can help break down the walls of racism and discrimination. My other reports from the WPA include an exposition of psychiatrists’ implicit contract with society, as well as African Union Commission Chair Nkosazana Dlamini-Zuma’s address at the opening ceremony of the WPA Congress, in which she called for international organisations to place more emphasis on mental health funding and activism.

What goes through your mind before you jump in front of a moving train?

Recently some friends of mine lost another close friend to suicide. By all accounts, he was a warm, smart, handsome guy with many friends who loved him. Although he had been through very rough times recently, no one had any idea that he had been feeling that low. His friends struggled to understand what he had been thinking and how he had reached that point without anyone knowing. I know that many of my friends and family had the same questions after my suicide attempt, so I’m going to try to explain my state of mind when I jumped in front of that train. Hopefully it will give you some insight into the minds of the people in your life who struggle with depression. Here goes.

Done. By the time you start planning your suicide, you are just done with the seemingly continuous upward battle towards a happiness that feels more and more elusive the longer you chase it. I felt that I had done everything I could think of to fix the constant ache inside myself and nothing was working. I had run out of options and could not think of anything more to do except to just end it once and for all.

The struggle every single day just to survive and not be discovered a fraud or not to lose a grip on everything was exhausting. I couldn’t face the prospect of going through this for the rest of my life, endlessly hoping for that one day when everything would fall into place and I could live – not fight, just live – a day that might or might not ever come. I couldn’t keep wearing the mask of being “fine, thanks”. I was weary and drained. I just wanted to go to sleep and never wake up – to have some relief, some rest, and to no longer worry that at any moment I was going to screw up.

Over the years, I had never reached out for help, because I thought it was my own problem, that no one else – friend or therapist – would be able to say something that would fix it all. People often confided in me and I enjoyed listening to and supporting them. Every time I thought of revealing my own struggle to anyone, however, I decided against it, because I knew that they had problems of their own and I didn’t want to burden them with mine as well – especially if there was nothing that they could about it. It was my responsibility to figure it out myself. I never considered that if I had given anyone the choice, they would have been honoured and pleased to support me.

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By the time I was planning my suicide, I had reached the conclusion that removing myself would be better for everyone – my parents wouldn’t have to take care of me if I returned to Cape Town from London without a job, my friends wouldn’t have to keep making the effort of trying to connect with me through my impervious walls that deflected any attempts at sincere and meaningful conversation.

Towards the end, just before my suicide attempt, whenever I considered talking to a friend or asking for help, I also wondered how I could justify to them that I had never come to them with this before. How could I have let it get this bad before trusting them to support me? Would they even believe that it was so bad that I was genuinely contemplating suicide, given that I had never spoken of my depression to anyone before? I didn’t want to seem like a drama queen who was only looking for attention.

None of these thoughts may seem rational to you, but that does not mean that they are not completely reasonable to someone with depression. Such mental illnesses distort your view of yourself and your relation to the world.

I remember a few months before my suicide attempt, a close friend of mine actually opened up to me about a breakdown that he’d had a few years earlier. He had even been on medication for depression for a while. Listening to him in that moment, I thought, “Yes! That is how I feel. I get it!” I wanted to confess all to him, but then decided not to, because I thought to myself that if I spoke to him then, just after he had bared his soul to me, he would not believe me. He would think that I was making light of his struggle by turning the attention on to myself and being patronising about something I actually knew nothing about. That made it difficult to talk to him then – but it was much harder trying to explain it to him a few months later, when he came to see me after I had lost both my legs in my suicide attempt and he asked me, “I told you my story; why didn’t you tell me yours?

Now that my depression has been diagnosed, I have been on medication and had monthly therapy sessions for two years. I still have some of the anxiety and self-esteem issues that I did before and they still affect the way I live my life to some extent, if I don’t remind myself that worrying about things beyond my control is futile. These issues no longer overwhelm me, however, and I feel capable of living a good life. Perhaps the biggest advantage to me is being able to acknowledge my depression as a real illness that I can control. It is not my own failure, flaw or weakness, just a condition that I must manage. I can recognise which of my fears and insecurities are unfounded and so disable them.

Humbling and scary as it is to admit my mental disorder, it is also liberating and rewarding to live an honest and frank reality with the people in my life. That I got this chance to start again makes me one of the blessed few. Suicide is not a choice, it is the conclusion to an illness that is left untreated. We need to make it okay for anyone to ask for help before that chance is taken away from them.