CHAPTER 25 David Shiers1,2,3 and Jo Smith1,4,5 1 National Early Intervention Programme, England 2 Leek, North Staffordshire, UK 3 National Mental Health Development Unit, London, UK 4 Worcestershire Health and Care NHS Trust, Worcester, UK 5 University of Worcester, Worcester, UK “More powerful than the march of mighty armies is an idea whose time has come.” Victor Hugo 1852 [1] Although this chapter will focus on how these changes came about in England, it is important to appreciate this in the context of a growing international early psychosis movement. From early collaborations in 1992/3 between service innovations such as Early Psychosis Prevention and Intervention Centre (EPPIC) and Psychosis and Crisis Evaluation Clinic (PACE) in Melbourne, Australia, and the Archer Centre in North Birmingham, England, an international community of interest emerged initially drawing in developments such as Norway’s Treatment and Early Intervention in Psychosis Programme (TIPS), Amsterdam with its family intervention programmes; Denmark’s OPUS, a psychiatric service for patients experiencing a first episode of psychosis (FEP) and a number of Early Intervention in Psychosis (EIP) services in Canada, United States and Singapore. Subsequently, these pioneering services have formalised their mutually supportive relationship by the creation of the International Early Psychosis Association (IEPA) (www.iepa.org.au). This was further enhanced by the creation of an international consensus statement, the Early Psychosis Declaration (EPD) endorsed by the IEPA and the World Health Organisation (WHO) in 2004. Within that international context, England has arguably enjoyed the most uniform EIP service implementation and our chapter explores how this transformation came about. The idea that it was desirable to treat conditions like schizophrenia earlier in their course is not new. Radical thinkers such as Harry Sullivan challenged (and may still challenge) traditionalists, convinced by Kraepelin’s [2] original description of ‘dementia praecox’ as a single disease entity (schizophrenia) with a universally poor outcome. “I feel certain that any incipient cases might be arrested before the efficient contact with reality is completely suspended, and a long stay in institutions made necessary.” Sullivan [3] However, Kraepelin’s dismal construction continued to dominate the values and principles of treatment for much of the twentieth century. It was not until 1977 that this pessimistic mindset was discredited by Manfred Bleuler’s [4] classic description, developed from observations of the course of schizophrenia in 208 patients and families collected over 20 years. Bleuler concluded of the dementia praecox model: “It seems almost incredible how one-sided theories on the schizophrenias, upheld entirely by wishful thinking and unsupported by empirical fact, could propagate themselves.” Bleuler [4] Further meticulous long-term studies would reveal that even the most severely affected could achieve positive outcomes amounting to partial or even complete recovery [5, 6]. Subsequently, the Northwick Park study found that individuals with a FEP taking longer than 1 year to access services had threefold more relapse in the following 2 years than those accessing services in under 1 year [7]. This study sparked intense research and clinical interest in the early phase of psychosis. This phase became conceptualised by Birchwood [8] as a ‘critical period’ with major implications for secondary prevention of impairments and disabilities and a rationale for intervening intensively and early, heralding the emergence of a range of new evidence-based treatments for these young people and their families. The initial Northwick Park findings would in time be further reinforced by an important meta-analysis which showed that longer duration of untreated psychosis (DUP) predicted more toxic pathways linked to poor response to treatment, recovery and long-term outcome [9]. Professor Fiona Macmillan, co-author of the Northwick Park study, helped develop the first UK EIP service in North Birmingham with her colleague Professor Max Birchwood mirroring similar service innovation in Melbourne [10]. Thus were laid the modern foundations for EIP service development in the United Kingdom. “Obsolete theories on schizophrenia without empirical foundations were not merely harmless assertions; they caused a great deal of harm.” Bleuler 1977 [4] Bleuler’s conclusions highlighted what was driving an increasingly politicised reaction against psychiatry. Dissent began to be voiced by people describing themselves as survivors of hospitalisation in overcrowded institutions where they had endured coercive treatments and a range of indignities, deprivations and abuses. Psychiatric institutions and professionals stood criticised for performing social control, rather than providing clinical support. This became a civil rights issue. Moreover, many professionals were disillusioned with the prevailing system even if they were unsure of what would work better. The century closed with UK political sensitivity heightened by high-profile media concerns for public safety (e.g. the tragic killing of Jonathan Zito by Christopher Clunis) [11]. The prevailing UK policy of ‘Care in the Community’ became severely criticised for neglect of individuals by overburdened community mental health teams (CMHTs) that relied excessively on crisis hospital admission and medication. Important in this dissent was a small group from the West Midlands region (population 5.2 million) in the 1990s, which formed following a complaint about local services by co-author Dr. David Shiers (DS) after his 16-year-old daughter had developed a psychosis. A 3-year journey through various hospital settings left his daughter effectively ‘written-off’ at the age of 19 in an antiquated asylum, situated where DS worked as a GP [12]. Professor Antony Sheehan, Regional Director of Mental Health, responded to David’s complaint by encouraging a small group to come together to improve services for young people. Some early proponents of EIP were identified: Professor Birchwood, clinical psychologist and researcher and service developer in schizophrenia; Dr Jo Smith, clinical psychologist from Worcestershire, who established one of the first UK family services for people with psychosis and their families; Professor Macmillan, the psychiatrist responsible for DS’s daughter’s care and co-author of the Northwick Park study. Identifying themselves as Initiative to Reduce the Impact of Schizophrenia (IRIS), (IRIS Guidelines 1999, [13]) and (website www.iris-initiative.org.uk), the group began to mobilise support for EIP. Their influence subsequently evolved from its original West Midlands base to become a coordinated national network. IRIS has supported four particularly influential steps in the EIP journey from margin to mainstream: We shall explore how these four initiatives synergised the ‘head’ and the ‘heart’. 1. 1997/8: West Midlands pathways to care audits. Several audits revealed typically late intervention in crisis reflecting problematic interfaces, for example primary/specialist interface and Child and Adolescent Mental Health Services (CAMHS)/Adult service interface. Although not unique to the United Kingdom [14], these audits provided hard evidence of local service experience with which to confront local health systems (Box 25.1) [15]. IRIS collaborated with voluntary sector consumer organisations such as Rethink, whose campaign ‘Getting help early’ had highlighted negative attitudes held by people with early psychosis and their carers towards traditional CMHTs. Thus, the ‘head’ provided the audit evidence and the ‘heart’ spoke out of its injustice. The stage was set for challenging the ‘one size fits all’ CMHT approach, as this campaign message captured: 2. 1998: IRIS regional guidelines. (IRIS guidelines 1999, [13]. As a consequence of those initial audits, and with the established North Birmingham EIP service as a practice exemplar, IRIS created a network for service innovation. The regional mental health lead asked IRIS to develop clinical guidelines from best available evidence. Importantly, this drew on experiences from similar EIP service innovations in Australia, Scandinavia, Canada and the United States. The IRIS guidelines described ten core service features: IRIS also set out some key service principles: The IRIS guidelines offered a service response to the very issues raised by Rethink’s ‘Getting help early’ campaign and the IRIS audit findings. They became the blueprint for the policy implementation guide [16], underpinning the subsequent national EIP reform. The ‘heart’ was being supported by an evidence-based ‘head’. And EIP was moving from the margins to the mainstream. 3. Early Psychosis Declaration (www.iris-initiative.org.uk). As part of creating pressure for political reform, IRIS embarked on an initiative to generate a consensus about the standards of care that those developing early psychosis and their families should expect. A model was used that had successfully transformed diabetes care 10 years previously – the St. Vincent Declaration for Diabetes [17]. Initiated by IRIS, with support from Rethink and the National Institute Mental Health in England (NIMHE), a consensus was developed into the Newcastle Declaration for early psychosis over two days by a group of 30 people from across England with particular interest in early psychosis, which included users, carers, practitioners and senior civil servants [18]. These people from apparently diverse perspectives were able to agree a platform of shared dissatisfaction from which to establish a common positive purpose. This remarkable meeting was to shift the whole focus of EIP service development towards improvement of health rather than reduction in illness. Supported by the IEPA and WHO as an international consensus [19], this became known as the EPD and was formally launched at the UK national EIP conference in Bristol in 2004 by WHO mental health director, Benedetto Saraceno. Subsequently, IRIS produced a practical toolkit to support EPD implementation, enabling services to benchmark and plan development [20]. The ‘heart’ in seeking health improvement rather than disease reduction, and the ‘head’ in setting evidence-based and measurable standards, had combined to create a compelling vision for change which now transcended national boundaries. 4. A National EIP Development Programme– ‘The head and heart deliver’. The next piece in our ‘head’ and ‘heart’ narrative is how the informal systems that had driven change were beginning to consolidate and stabilise. An emergent direction was clear – the EPD as a value-base, a policy priority established, a strengthening evidence-base and the service model agreed. A structure was needed that could organise the various elements – the National EIP Development Programme. Established by NIMHE and Rethink in 2004, this initiative would support National Service Framework (NSF) implementation until its conclusion in 2010. The authors, as a small central hub, linked closely with nine regional EIP lead to support a coordinated EIP movement which embraced three synergistic elements – policy, research and practice. Programme friend, Dr. Glenn Roberts, likened these elements to wind vectors that filled the sails to drive the craft forward (Roberts G, personal communication, 2006). We have described these elements below as single entities. The reality was a complex blend, sometimes one and sometimes another vector would assume the main driving force. Pushed on by these forces, the programme learnt how to navigate the complex waters of change. Policy. Responding to groups like IRIS and Rethink in the late 90s and influenced by the IRIS guidelines and the EPD, policymakers developed the NSF for adult mental health [21], the NHS Plan [22] and the Policy Implementation Guide [16]. These drew upon the evidence base to specify, bottom-up (i.e. on the basis of population and individual need), team case loads, the full range of effective interventions for psychosis to be provided and the service configurations necessary to deliver them. Designed to deliver a more intensive and person-centred approach, these aimed to break the cycle of crisis response and hospitalisation by offering a 3-year package of evidence-based interventions, sensitive to age and phase of illness. EIPs priority status has remained undiminished from 1999, supported by the national programme’s successful interweaving of policy, research and practice. Research. The ‘heart’s’ dissatisfaction with traditional services underpins this whole narrative. The policymakers had responded as Box 25.2 shows. Could the ‘head’ come up with the evidence?
Early Intervention and the Power of Social Movements: UK Development of Early Intervention in Psychosis as a Social Movement and its Implications for Leadership
An international context
Early intervention in psychosis: ‘developing the head’ – the knowledge base
EIP: ‘developing the heart’ – the right to social justice
Related posts:
Perinatal Preventive Interventions in Psychiatry: A Clinical Perspective
How Early Intervention Can Turn Things Upside Down and Turn a Patient Into a Psychiatrist
Transiting Out of Child and Adolescent Mental Health Services – Influences on Continuities and Discontinuities in Mental Health Care
Early Intervention for Borderline Personality Disorder
Early Intervention in the General Hospital
Early Intervention for Self-Harm and Suicidality
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