A National Scandal: Psychological Therapies for Psychosis are Helpful, But Unavailable
Mad in America; Peter Kinderman and Anne Cooke, 4/1//2014
For years, drugs were it. If you felt paranoid, heard voices or were diagnosed with schizophrenia, the only thing likely to be on offer was ‘antipsychotic’ medication. Like all drugs, these have a number of different effects on our nervous system. Some of the effects can be helpful, for example calming us down or making our experiences less intense or distressing. Others may be less desirable. The unwanted effects – euphemistically called ‘side’ effects – of these particular drugs can be seriously distressing. For some people, they can be more disabling than the original problem. Despite the drug industry hype, it’s been a fine balance for many people, and worrying evidence is now emerging that some drugs can cause serious and permanent problems such as brain shrinkage if taken long-term.
In view of the downsides of antipsychotics it comes as something of a relief that there is a possible alternative Psychological approaches such as cognitive behaviour therapy (or CBTp, the ‘p’ standing for psychosis) have become increasingly popular. NICE (the National Institute for Care Excellence) is sufficiently convinced of the effectiveness of these approaches to recommend that they should be offered to everyone with a diagnosis of schizophrenia. Traditionally they have been offered in addition to drugs, but a recent trial suggests that they might also be promising as an alternative.
Last week saw a flurry of debate about this issue. On Wednesday, the Guardian published an article somewhat skeptical of the value of psychological therapies for people experiencing psychosis. The same day, a packed house at London’s famous Institute of Psychiatry debated the motion ‘This House Believes that CBT for Psychosis has been Oversold’. We were there: Peter was one of the speakers against the motion.
The proposers of the motion suggested that CBTp should ‘live or die by meta-analysis’. A meta-analysis, for the uninitiated, is a statistical technique that allows findings from various trials to be averaged out. As in the Guardian article, the argument was that some of the claims made by researchers in this field have been overblown.
Psychiatrist David Kingdon, himself a leading researcher in the field and responsible for some of the trials, countered that only certain studies get selected for meta-analyses. He also gave some of the background behind the figures – what actually happened, and what the (often positive and grateful) participants in the studies actually said. The yardstick for overselling in the mental health field has to be the efforts of the pharmaceutical industry. Professor Kingdon asked the audience – many of them NHS clinicians with offices overflowing with drug company freebies – if they could remember ever seeing a mug or post-it note with ‘Psychological Therapy for Psychosis’ or ‘CBTp’ printed on it in a fancy typeface? There was slight shuffling while members of the audience discreetly covered up the drug company pads and pens they were using…
As often happens, all four debaters were white, male, middle class academics, but we did hear from people who’d been offered therapy, including this man, David: “CBT has helped me remain aloof from this voice and I no longer believe what it says. I now think of it as a petty bully and don’t let it bother me…. The only thing I regret is that I didn’t have access to CBT sooner – it could have prevented a lot of suicide attempts and I wouldn’t have felt so awful for so long.”
The problem with many trials, and therefore with meta-analyses too, is that professionals decide in advance what they are going to measure and what counts as a ‘good’ outcome. Those may or may not be the things that are actually important to people. For example, trials frequently measure ‘symptom intensity’ – how loud someone’s voices are, say. That may of course be irrelevant to how upsetting the person finds them, how satisfied they are with their life more generally, or what their expectations of therapy are. Even if the intensity of the ‘symptoms’ doesn’t change much, therapy may help with other things, as David’s account illustrates.
We also heard evidence that CBT can actually lead to changes in the ‘wiring’ of the brain – it’s not just a sticking plaster solution. And unlike drugs, talking therapies are only ever offered to people, not foisted or forced on them. The influential Schizophrenia Commission recently found that despite CBT for psychosis being recommended by NICE, only one in ten people who could benefit are actually offered it. The other nine presumably get drugs, willingly or in some cases under duress.
Then it was time for the audience to join in. And they sure did. One person was concerned that CBT might squeeze out other psychological approaches. A psychiatrist thought that was irrelevant given how few people are offered any talking therapy – he said that in his whole career he had never come across anyone experiencing psychosis who had been offered CBT. Others pointed out that things are moving apace as we learn what people find helpful, and rather than splitting hairs over the relative merits of different approaches, we should celebrate that we now have the science to back up what service users have been telling us for years. When we’re in great distress, be that because of life events or so-called ‘psychiatric symptoms’ like voices, we need the opportunity to talk through our experiences and – where relevant – how they have affected our view of the world. We need a calm, supportive and non-judgmental atmosphere to do that in, with someone familiar with the territory. If that was what mental health services provided, rather than – as too often happens – just insisting that people accept that they are ‘ill’ and take drugs, the outlook for those of us who need to use them might be very different.
And the result of the debate? At the show of hands beforehand, the audience was evenly split (83 for, 87 against, 61 abstainers). After the arguments had been heard, around half of those who had previously voted for the motion went over to the other side, together with more than half of the abstainers. Only 47 voted for the motion and 25 abstained. The vast majority, 132, decided that CBTp has NOT been oversold.
The issue is not one of overselling, it’s that psychological therapies are shamefully underprovided.