Schizophrenia: The ‘not so nice’ guidelines.
ã Phil Barker and Poppy Buchanan-Barker 2003
Only a few months into the New Year and things are looking good for people in schizophrenia. Well, not quite. Some shiny new guidelines have emerged, which identify the "Core interventions in the treatment and management of schizophrenia in primary and secondary care" (NICE, 2002). These represent the latest example of the government’s commitment to ‘evidence based practice’. Produced by the National Institute for Clinical Excellence (NICE) these ‘clinical guidelines’ have been circulated widely throughout England and Wales. Given their political context, they will doubtless act as a major lever for change in practice. However, will this represent a lever for good or ill?
Even a casual glance confirms the impression that by ‘clinical’ NICE is offering an overtly medical view of schizophrenia. Indeed, the guidelines are not really about people in a highly disturbing state of mental distress but, as the title suggests, focus on the management of a presumed ‘illness’. Schizophrenia may still be an umbrella title for a wide range of human distress, but the NICE people believe that schizophrenia is an illness. They have no way of testing for its presence, other than by subjective observation, but this does not prevent them peddling the half-truth that people have schizophrenia – in the way that people have influenza, cancer or HIV. People might better be described as being in a disturbing state, which is called schizophrenia; a view that is slowly gaining support (Jenner et al, 1993). This is more honest and realistic, since people are clearly distressed (and sometimes distressing) but what exactly lies behind or beneath such distress remains unknown. Acknowledging the uncertainty of ‘not knowing’ clearly unnerves the NICE people, who prefer to believe that they know both what schizophrenia is, and how it needs to be managed.
The NICE guidelines comprise 109 recommendations on ‘treatment’ and ‘management’ ranging from the need for ‘optimism’ to the need for ‘rapid tranquillisation’. Ironically, although great emphasis is given to the importance of the ‘evidence base’ only 10 of the recommendations, (less than 10%) come from the so-called ‘gold standard’ of the randomised controlled trial (RCT). Two of these use scientific sledgehammers to crack the proverbial nut. One proposes that: ‘family interventions should be available to the families of people with schizophrenia who are living with or in close contact with the service user’ and another that: ‘acute day hospitals should be considered as a clinical and cost-effective option for the provision of acute care’. We do not know how much money was spent conducting how much research that led to these earth-shattering findings. However, both represent, in our humble view, gold standard statements of the obvious.
Almost half of the guidance notes are devoted to pharmacological interventions. Given the huge amount of research done over the years into schizophrenia - most of it funded by drug companies - we expected these pages to be printed on gold leaf. Surprisingly, only one of the 51 pharmaceutical recommendations is drawn from a RCT. In keeping with the tone of the guidelines this announces, with great solemnity that: "for optimum effectiveness in preventing relapse, depot preparations should be prescribed within the standard recommended dosage and interval range" (emphasis added). Given the great importance NICE attaches to science and rigour, one wonders how doctors managed to flout the guidance of chemists on the ‘standard recommended dosage’ for so long. By finally advocating a standard for drug prescribing, which should have been established from day one, NICE belatedly uses research to underline the obvious, and to fake the semblance of progress.
In effect, most of the guidelines are based on nothing more scientific than the ‘evidence’ of "expert opinion". This is astonishing since most of the public and highly politicised pronouncements on evidence rank ‘expert opinion’ just one notch above ‘completely useless’. So, despite the massive amounts of money that has been poured into the coffers of research departments, to encourage infinite numbers of staff to pour infinite amounts of mind-bending drugs down the throats a truly infinite number of unsuspecting people, the net result appears to be a very finite body of knowledge indeed (cf Whitaker, 2002). More than a third of these are called, grandly, ‘good practice points’ – recommended good practice based on the clinical experience of the Guideline Development Group. Some of these are banal in the extreme – for example, that ‘assessment….should be comprehensive…" or that "health professionals ….should take time to build a supportive and empathic relationship with service users and carers..". If evidence-based guidance at this level is needed then things are even bleaker than we thought.
Given that NICE is an arm of central government the guidelines speak with the voice of authority. But, to what extent does the Guideline Development Group (GDG) speak with the voice of authority? The GDG comprised twelve members but was weighted towards the ‘treatment’ end of the spectrum - medicine (4) clinical psychology (3) and pharmacy (1). Although nursing (1), service user (1) and mental health charity group representatives (2) were in evidence, none of these members had the status, and professional clout of their distinguished medical and psychology colleagues. The Guideline Development Process (NICE, 2001) noted that "professional members should have: "an interest in and experience of the guideline topic, but this need not be as an ‘expert’" (NICE, 2001). One wonders, therefore, why the GDG needed one consultant psychiatrist from practice, two professor of psychiatry, one professor of primary care and the Deputy Director of the Royal College of Psychiatrists Research Unit, if professional ‘experts’ were not needed. Similarly, of the two psychologists involved, one was a professor of clinical psychology and the other director of the Centre for Outcomes research and Effectiveness. Why did NICE not consider it worthwhile to enlist the support of a distinguished or high ranking mental health nurse (as they had done with medicine and psychology) and perhaps also some of the well-published, highly experienced user-advocates. Were we being uncharitable in thinking that this was because nursing is still viewed, primarily, as a supporting player in mental health care, and the user input is still, largely tokenistic, at this political level?
Although there were a couple of references to the need to address social care no social work representative was included in the GDG. This was probably explained away on the grounds that the "guidelines are recommendations for the care of individuals by healthcare professionals" (NICE, 2001). However, given the critical role of social services and various other groups, especially in the area of rehabilitation and recovery, their absence from the GDG was disappointingly short sighted. The lack of balance within the GDG and the narrow focus on ‘health-related evidence’ seriously calls into question the status and validity of the guidelines’ view of ‘good practice’
Carers, advocates and ‘people with schizophrenia’, are privileged with a special appendix, which spells out, almost in words of one syllable, the virtues of the guidelines. This advice chats cosily about people becoming "unwell" and their need for "treatment". Despite a comment about there being "a number of different treatments for people with schizophrenia", all these "do the same thing but have different side effects". In effect, ‘patients’ and ‘carers’ are being told that the treatment is drugs, and nothing else matters.
We would be surprised if, at least, a significant minority of user groups did not find these guidelines wanting. We would hope that professionals, who are interested in caring for and working with people would want to ask, ‘where did the person go? For there are few, if any, references in the NICE guidelines to people with schizophrenia, and certainly none to them as complex human beings. There are several references to ‘advance directives’, but these serve only to note that that "there are limitations with advance directives", although the nature of these limitations is never detailed. Instead there is a recommendation that ‘advance directives (should be) "developed and documented in individual’s care programmes whenever possible". Presumably, once this has been done, the NICE professional can get on with the serious business of giving the patient the kind of treatment, which the (NICE) professional thinks is needed.
We know quite a few people who have been in the state called schizophrenia, but we have never known them as patients – only as people. Given this personal knowledge we are most unnerved by the arrogant recommendation that someone who is even "suspected" of a diagnosis of schizophrenia in primary care "should be referred urgently to secondary mental health services" and the GP should "consider starting atypical antipsychotic drugs at the earliest opportunity". This ignores the fact – known for decades – that many people so diagnosed recover with no treatment and many more recover given the right kind of social support (see Alanen, 1997; Fenton et al, 1998). Instead, the guidelines want the person to embark on the dangerous and potentially debilitating career of psychiatric patients, as soon as possible.
The guidelines also contribute to the myth that ‘antipsychotics’ have a specific effect – like antibiotics – rather than acting like a fancy tranquilliser. Whitaker’s recent critique (2002) illustrates vividly the history of deception and corruption that has dogged the history of the development of today’s ‘antipsychotics’. It is inappropriate to talk of the ‘treatment’ (by drugs) of a complex phenomenon like schizophrenia, since what is being offered is merely a chemical means of controlling and delimiting the person, neurologically. Many (if not most) of the people in the schizophrenic state continue to be dogged by disturbing voices or disabling belief systems, but are no longer motivated to communicate about these experiences.
Someone who is in the human crisis that is called schizophrenia begins to fall apart. Such disintegration is an expression, however oblique, of the emotional, if not spiritual, pain of their lives. The guidelines recommend muffling this distress - and its likely many precipitating factors - with the blanket notion of ‘illness’, instructing both patient and family carefully in the medical understanding of schizophrenia and dominant virtue of medication.
In February a federal appeals court in the USA ruled that a mentally ill inmate could be treated with anti-psychotic drugs to make him ‘sane enough’ to be executed (Cornwell, 2003). The St Louis court found, by a 6-5 majority, that "involuntary medication followed by execution" was "a better choice" than the withholding of drugs followed by psychosis and imprisonment.
Charles Singleton was convicted of killing an Arkansas grocery store worker in 1979 and has been on Death Row ever since. In 1987, his mental health began to worsen and he came to believe his prison cell was inhabited by demons and a prison doctor had implanted a device in his ear. He was administered ‘anti-psychotic’ drugs - sometimes voluntarily, sometimes by force.
The Singleton case sets the NICE guideline in an extreme, but interesting, moral context. A dissenting judge, Gerald Heaney, wrote in a minority opinion: "receiving treatment is not the same as being cured. Drug-induced sanity is not the same as real sanity." Heaney added: "Singleton is not 'cured'; his insanity is merely muted, at times, by the powerful drugs he is forced to take."
We do not doubt that the NICE guidelines will promote a more streamlined, uniform approach to the treatment of schizophrenia. However, they are about pathology, not people. Apart from the overkill on drugs, in the absence of scientific evidence, no reference is made to the powerful potential of peer-support, like the Hearing Voices Network, or to the potential inherent in people to recover and reclaim their lives – often in the face of the sternest psychiatric opposition (Barker et al, 1999). In that sense the uniformity of the guidelines may be uniformly inappropriate. The biggest sin committed by the NICE guidelines is one of omission. By ignoring entirely the great strides that are being taken through mutual support and self-help groups, the guidelines ignore the wider social context of mental health care. By reframing recovery as a ‘treatment’ issue, rather than a deeply social and cultural issue, if not a spiritual issue (Barker and Buchanan-Barker, 2003), the guidelines dispense with the human heart of the lived experience that really is schizophrenia.
It seems likely, however, that the guidelines will be swallowed – hook, line and sinker – by professionals whose every practical move is determined by the next text-message from the political centre. We hope that at least some of them will read the text, and consider the huge human gaps that lie between the lines, and ask themselves whether they can deliver personal care in the absence of an understanding of the deeply personal and interpersonal nature of schizophrenia.
For Ayn Rand, the novelist-philosopher, the difference between a welfare state and a totalitarian state was merely a matter of time. By offering professionals this monocular vision of schizophrenia, NICE knocks human care off the agenda, edging us closer to the totalitarian view of control through ‘treatment’. In that sense the guidelines are not at all ‘nice’ and, even if well-intentioned, possess a great potential to do harm, if only through neglect - neglecting the personal, social and cultural complexity of the human distress that we have come to call schizophrenia.
Alanen Y (1997) Schizophrenia: Its origins and need-adapted treatment. Karnac Books, London
Barker P, Campbell P and Davidson B (1999) From the Ashes of experience: reflections on Madness, survival and growth. Whurr, London
Barker P and Buchanan-Barker P (2003) Breakthrough: Spirituality and Mental Health, Whurr, London
Cornwell R (2003) Mentally ill inmate to be 'made sane' for execution The Independent Wednesday, 12th February.
Fenton W, Mosher L, Herrell J, Blyler C (1998) A randomized trial of general hospital versus residential alternative care for patients with severe and persistent mental illness. Am J Psychiatry 155:516-522.
Jenner F A, Monteiro, ACD, Zagalo-Cardoso JA and Cunha-Oliviera JA (1993) Schizophrenia: A disease or some ways of being human? Sheffield University Press, Sheffield.
National Institute of Clinical Excellence (2001) The Guideline development process: Information for National Collaborating Centres and Guideline Development Groups. NICE, London
National Institute of Clinical Excellence (2002) Schizophrenia: Core interventions in the treatment and management of schizophrenia in primary and secondary care. NICE, London
Whitaker R (2002) Mad in America: bad science, bad medicine and the enduring mistreatment of the mentally ill. Perseus Publishing, Cambridge, Mass.