From the Editor
“So, my schizophrenia story. Well, the story is mine, but the schizophrenia was Donald’s. He would happily have told you his story himself, for he was very proud of the life he led, given the seriousness of the condition. Sadly, he can’t, as he is dead. So I will tell his story instead.”
Alastair Campbell is many things. He is the author of more than a dozen books. He is a former press secretary and director of communications for UK Prime Minister Tony Blair. He is the father of three.
And he’s the brother of a person who had schizophrenia.
In this week’s Reading, we consider his speech for the Schizophrenia International Research Society, “The Shittiest of all the Shitty Illnesses.” He discusses his brother’s illness and its impact on his family – and he also talks about his brother.
In this Reading, we consider Campbell’s comments, and also the larger issue of reduced life expectancy for those with severe mental illness.
Brotherhood and Schizophrenia
“The Shittiest of all the Shitty Illnesses”
Address to SIRS, 5 April 2018
Thanks for asking me to speak to you, here in one of the world’s most beautiful cities, inside the political and economic success story that is the European Union…
I am here… to support for the Schizophrenia International Research Society, and urge you to keep working hard to improve the diagnosis, care and treatments for all who have what my brother Donald, who you saw in that brief film, called ‘this shitty illness.’
I talk a lot about mental health; mainly from the perspective of changing the way we think about mental illness, the need to eradicate discrimination, to end inequality of access, which means in the UK for example, only fifteen percent of those who would benefit from talking therapy get it; to deliver on the maximum waiting times which often exist in theory but just as often are not met; to make the words ‘parity between physical and mental health’ actually mean something; to stop mentally ill kids being locked up in police cells, to accept that prisons the world over are filled with people who should be in hospital not jail; to ask ourselves why mental illness is something of a research desert compared with physical illness; to urge governments to invest more in mental health today as a way of saving money tomorrow; to stop them using the anti-stigma campaigns as a way of avoiding rather than increasing the provision of services — so … quite enough to be going on with, for the Time to Change campaign of which I am ambassador.
I talk too from a personal perspective, my own issues of depression, drink and psychosis; and especially the life and death of my big brother Donald.
Alastair Campbell with his brother, both on bagpipes
So begins a speech by Alastair Campbell.
On his brother:
Born 1954. Didn’t do very well at school. The only one of four children in the family who didn’t go to university. He never made much money. He had a wife, but only briefly.
But to me, whatever successes I and other family members have had, Donald was the real star of Clan Campbell. Because his achievements were all made in defiance of the shitty illness.
A top musician, turning his lifelong love of bagpipes, which our father taught us to play as children, into a career, first in the Scots Guards, then as a performer, competitor, composer, teacher and as the official piper to the Principal of Glasgow University.
On seeing his brother with psychosis for the first time:
We all have moments, don’t we, that even as we live them, we know, they will define our lives. I knew that moment, when my Dad and I walked into the military hospital and saw Donald lying there, scared, paranoid, scribbling odd drawings on the wall, and telling us what Jesus had said when they chatted earlier, that moment was one of them. We just stood there, shocked to the core.
It was a tough place. That is no criticism of the doctors and nurses. They were operating at a time when servicemen and women who wanted to leave service early had to ‘buy their way out’ and so, I think there was a suspicion some were feigning mental illness as a way of getting out free. It was also a time when ECT was a favoured form of treatment and Donald had his fair share of that. I am aware of the potential benefits, but not least because of the context, he found it terrifying.
My mother often said that her life changed the second she got the phone call saying he was diagnosed with schizophrenia, and it never changed back again.
So for the patient, a shitty illness. For the family, a shitty illness. In some ways, the shittiest illness there is. No crutches. No bandages. No scars. No sudden baldness to signal what is going on. All in the mind. People who have it often pariahs, shunned in the workplace, derided and abused on the streets.
A few thoughts:
- This is a great speech.
- Donald Campbell died at age 62. Like many people with mental illness, he lived a much shorter life than his peers. For the record, his father died at 82.
- Campbell lived in the UK. Joseph F. Hayes et al. considered UK data in a paper on mortality and mental illness, published in The British Journal of Psychiatry. They conclude: “In this cohort of over 17 000 people with bipolar disorder and over 22 000 with schizophrenia, we found decreasing rates of all-cause mortality for both disorders since 2000. However, the HRs for mortality relative to a matched general population comparison group increased from the mid-2000s. This suggests that the improvement in health in the general population is increasing more rapidly than in those with SMI [severe mental illness], and health inequalities are growing. This is despite a greater focus on this problem at a national and international level, in specialist, primary care and public health settings.”
- How does Canadian data compare? In a CMAJ paper, Evgenia Gatov et al. find: “Between 1993 and 2012, individuals with schizophrenia experienced 3 times greater mortality rates, compared with the general population, even after adjustment for sociodemographic factors. All-cause mortality rates in both groups declined in parallel by about 35%, and were higher in men, those with low income and rural dwellers.”
- In The New York Times, Dhruv Khullar recently wrote on this topic, “The Largest Health Disparity We Don’t Talk About.” He notes two problems clinicians have in terms of physical illness in those with serious mental illness:
The first is therapeutic pessimism. Clinicians, including mental health professionals, often hold gloomy views about whether patients with serious mental illness can get better. This can lead to a resigned passivity, meaning that certain tests and treatments aren’t offered or pursued.
The second is a concept called diagnostic overshadowing, by which patients’ physical symptoms are attributed to their mental illness. When doctors know a patient has depression, for example, they’re less likely to think her headache or abdominal pain portends a serious illness.
Is there any good news? The article notes some good news in a couple of programs:
- “The weight loss program was devised for patients with serious mental illness, who often struggle with memory, attention and learning issues. The patients were taught material in small chunks with frequent repetition; role-played the selection of healthy foods; and got help organizing their homes to enable a healthier lifestyle.” Unlike the usual care – where patients didn’t actually lose weight – those in the weight loss program lost 7.5 pounds and 40% lost 5% of their total body weight.
- “UT Health San Antonio created a transition clinic for patients with mental illness discharged from hospitals and emergency departments throughout the city. The goal is to get these patients evaluated within days. They meet with psychiatrists, social workers and therapists. They receive training in how to buy groceries and use public transportation. They’re visited at home by case workers who help organize not only their psychiatric drugs, but also their cholesterol and blood pressure medications.” The author notes that readmission rate is low compared to people not in the program: 1% versus 7% within a month post-discharge.
Here are the links:
The BJP paper:
This study was discussed in a past Reading:
The CMAJ paper:
Dr. Khullar’s essay:
Reading of the Week. Every week I pick articles and papers from the world of Psychiatry.