‘There is nothing I’d rather be doing than fighting the corner for people with psychosis’
Take me back to when you first began working in psychosis. What was it like?
Basically it wasn’t seen to be a wise thing to talk to people with psychosis about their ‘symptoms’, as it would make them worse, i.e. they would ‘decompensate’. So you might take them out for a walk from the ward, making small talk, to distract them; or if there ‘behavioural’ problems you might do a behavioural programme for the nursing team to implement. Another role of the psychologist would be to do cognitive assessments, which would be ordered by the consultant psychiatrist as part of a range of tests like blood tests, often with little rationale for its purpose.
How did things begin to change?
In the 1980s people like Richard Bentall started ‘rebelling’ against the dominant medical model view, arguing that schizophrenia as a diagnosis or concept did not hold up to scientific scrutiny, nor did it have much clinical utility. He and others argued that psychosis was on a continuum with health and ‘normality’, and that it would be more fruitful to study/understand the symptoms or experiences people were having, such as delusions and hallucinations, rather than diagnostic entities.
This was the start of people coming up with psychological models of symptoms, culminating in the now well-known cognitive models published by Philippa Garety et al, Tony Morrison, and Paul Chadwick and Max Birchwood. It was also around this time that experts-by-experience movements started to develop, such as the Hearing Voices Network (HVN) – the CBT framework dovetails with that of the HVN, and was very much influenced by it, with both approaches normalising hearing voices and focusing on the person as a whole, rather than on the ‘illness’.
And if you could understand symptoms psychologically, then you could also change them psychologically?
Exactly. Around the late 80s/early 90s people like Kingdon and Turkington, David Fowler, and Paul Chadwick published case series of cognitive therapy for positive symptoms, which then led to the early pilot RCTS of CBTp, as it became known. Some of the early trials, for instance by Tarrier and colleagues, focused on the more behavioural side of CBT (e.g. coping strategy enhancement), while the Garety, Fowler and Kuipers, Morrison, and Chadwick and Birchwood groups were more cognitive, focusing on the meaning of psychotic experiences. As the literature and clinical practice developed, people became more focused on therapies that target specific symptoms rather than generic psychosis (such as the work of Max Birchwood on command hallucinations, and of Daniel Freeman on persecutory delusions), as well as investigating third-wave or process therapies such as ACT, mindfulness and CFT.
The stereotype has often been that psychosis is just too tough, too tangled, to tackle with a basic cognitive model and the talking therapies approach. That’s not what you’ve found?
It is true that psychosis is complex, and as a result CBTp involves many adaptations to traditional CBT: it is more flexible, with a greater emphasis on engagement and working towards valued goals, and typically lasts over six months. It is an adjunct therapy to medication, rather than an alternative, although it should also be offered to people who do not wish to take medication. Formulations are often ‘bespoke’ for the particular presentation, which are complex and varied, rather than relying on a single ‘model’. Although the main trials have tended to have severity of psychotic symptoms as their primary outcome measure (mainly because funders will insist on the ‘gold standard’ measure for that population), in practice the primary aims of CBTp are to reduce distress and improve functioning, rather than necessarily getting rid of symptoms. Not everyone will engage or benefit, but often you might get small gains that are nevertheless meaningful to the individual – which are not necessarily easily captured by our current outcome measures.
So is looking at symptoms entirely the wrong approach?
I wouldn’t say that looking at symptoms is the ‘wrong’ approach, but just that the aim is not necessarily to eradicate them… also we shouldn’t assume that presenting psychotic symptoms will necessarily be the most important issue to address for the person, even if they may seem the most ‘abnormal’ to the observer. For instance, some people will report they can cope with their voices – they may even keep them company – but it’s the despair of waking up each day with nothing to do, having no meaningful, socially valued roles, no relationships, etc. that is the issue. We always need to bear in mind that our role is not to change what is abnormal but what is distressing.
Over the years I’ve witnessed a big shift from diagnosis to formulation, asking what has happened rather than what is wrong. This seems to have found another gear recently.
In psychological work for psychosis it has never made much sense to work within a diagnostic framework – CBTp does not ‘treat’ schizophrenia, it helps people to relate to their psychotic experiences in a less distressing way, and to achieve their goals. These experiences, such as hearing voices, occur in a variety of diagnoses, ranging from bipolar disorder through post-traumatic stress disorder to emotionally unstable personality disorder. The diagnosis will not necessarily provide much helpful information for guiding therapy – what is important is the beliefs they hold about these voices, what the voices say, the relationship they have with them, and how they cope with them. And these factors vary more within than they do across diagnoses. Plus many people with psychosis will also suffer from depression and anxiety; it is not necessarily helpful therapeutically to think in terms of having to treat three separate ‘disorders’. The affective component is likely to be part and parcel of the psychosis symptoms: fear and low mood drive voices and paranoia as well as being emotional sequelae.
But we must be mindful of the different meaning that receiving a diagnosis has for different individuals. For many, being told they have ‘schizophrenia’ is incredibly invalidating and stigmatising; but for others it can provide comfort and an explanatory framework. The important thing is to be respectful of the person’s ‘model of understanding’, even if it clashes with your own model.
How realistic is it, in ‘these austere times’, for applied psychologists to tackle causes, and causes of causes, rather than just bashing away at symptoms like a big whack-a-mole problem?
Well, I get really frustrated with the simplistic dichotomous view – I must say, aired in the letters section of The Psychologist and elsewhere – that CBT locates the fault in the individual rather than the real source of suffering, which are social factors and inequality. Undoubtedly social factors such as abuse, discrimination and poverty have a causal role in all mental health difficulties, including psychosis. What CBT does is link past experiences and/or present circumstances with current views of the self and the world, as well as psychosis symptoms: e.g. bearing in mind what has happened to you/what is going on right now, no wonder you feel powerless/hopeless/frightened/paranoid, etc. Or explaining that hearing voices is an entirely ‘natural’ response to extreme stress/trauma. A large part of CBTp is to normalise psychotic experiences and try to make them understandable within the context of the person’s life experiences. But suffering being rooted in social causes doesn’t mean that the person can’t achieve recovery – and to achieve change the important thing is to tackle unhelpful vicious cycles that maintain distress and prevent the person from reaching their valued goals, regardless of what has caused them. This doesn’t mean that progress can’t be hindered by the person’s circumstances, and many times I have wished I could just give people money or grant their asylum status. But it is still worth trying to maximise people’s quality of life through psychological means, despite the limitations set by biological or social factors.
Has your personal view of the psychotic experience changed over the years?
As a therapist, you suffer from the ‘clinician illusion’ – the people you see are, by virtue of the context you are working in, inevitably distressed by their experiences. My other area of research is looking at people in the general population who have psychotic experiences – we’re talking full-blown, persistent experiences: the average duration in my last study was 31 years – but who are not distressed by them, and have no ‘need for care’, in the sense that they have not received a diagnosis, have not sought or been in need of help for their psychotic experiences. In fact, for many, these experiences have enriched their lives. Some describe themselves as psychics or having a clairaudient gift, and they harness these ‘skills’ professionally.
It has been fascinating to investigate these individuals and try to understand what might predict benign from malign outcomes of these experiences – as therapists, we have a lot to learn from them. They are a very different group demographically, but they also tend to have non-threatening appraisals of their experiences (e.g. spiritual or normalising appraisals), although they are just as likely as clinical groups to make external attributions of their experiences. They also tend to be part of cultural subgroups that provide validation and support for their experiences, and they don’t tend to use unhelpful coping strategies such as avoidance or control.
Has change involved a lot of interdisciplinary work?
I stopped working in multidisciplinary teams about 10 years ago, since I now focus on running a psychological therapies service for psychosis, so I may not be the best person to answer this. I do feel, though, that these days there is less of a chasm between the different disciplines, and that bar a few die-hards on each side we are all thinking more in bio-psycho-social terms.
What continues to drive you, after two decades when you’ve achieved so much?
I am what you would call a ‘second-generation’ CBTp therapist – the first generation, the people who pioneered it, are the ones who achieved so much. I was privileged to be a trainee on placement with Philippa Garety when she was first developing this work, and to be able to team up with Elizabeth Kuipers a few years later to set up our psychological therapies for psychosis service (PICuP).
I have been running PICuP for nearly 20 years now, and despite austerity and other NHS challenges we have grown from employing one part-time therapist (now Professor Kathy Greenwood), to a team of around 15 therapists, and employing service users to run our peer-support service. At times it does feel like trying to run a business on perpetual brink of financial collapse. What continues to drive me is the fantastic work the therapists do with the clients, who are one of the most marginalised groups in society; and leading a group of dynamic and wonderful staff who all have a sense of shared values. There is nothing I’d rather be doing than fighting the corner for people with psychosis to have access to psychological therapies – it’s the most meaningful thing I do.
BOX: What should a person do if they experience a first psychotic episode, or suspect it in a friend or relative?
‘The first thing to do is to not panic. Hearing voices or feeling paranoid does not mean the person will inevitably develop psychosis – such experiences are much more common than you think. For many people the experiences will go away by themselves, and even for people whose experiences persist it is still possible to lead a perfectly normal life. Make sure the person gets plenty of sleep and stays away from drugs. If it is happening to a friend or relative, resist the temptation to try and convince them they’re wrong – this will be invalidating to the person, and only serve to cause psychological reactance and increase paranoia. Instead validate their distress and offer your support. There are self-help groups for people who hear voices or spiritual bodies that can be helpful.
However, if the experiences are very distressing or get in the way of the person being able to function day to day, then get help. The GP is the first port of call; they may prescribe some medication and/or make a referral to an Early Intervention for Psychosis (EIP) service. EIP teams will offer medication, social/vocational support and psychological interventions, as appropriate. Or if it is an emergency situation, then go to A&E. As a very last resort, and the person is at risk of harming themselves or others but won’t go to A&E, then you should call the local mental health crisis team or the police, who may need to arrange for the involvement of a Home Treatment Team or an admission to hospital. But this is very much a last resort – for most people a psychosis episode can be resolved through support of friends and family or an EIP team.’
Further useful information can be found in the British Psychological Society document Understanding Psychosis and Schizophrenia (www.understandingpsychosis.net).
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