Evaluation of a community awareness programme to reduce delays in referrals to early intervention services and enhance early detection of psychosis

Lloyd-Evans et al. BMC Psychiatry Evaluation of a community awareness programme to reduce delays in referrals to early intervention services and enhance early detection of psychosis Brynmor Lloyd-Evans 0 Angela Sweeney 0 Mark Hinton 2 Nicola Morant 0 Stephen Pilling 1 Judy Leibowitz 4 Helen Killaspy 0 Sanna Tanskanen 2 Jonathan Totman 2 Jessica Armstrong 2 3 Sonia Johnson 0 2 0 Division of Psychiatry, University College London , Charles Bell House, 67-73 Riding House Street, W1W 7EJ London , United Kingdom 1 Department of Clinical , Education and Health Psychology , University College London , 1-19 Torrington Place, WC1E 7HB London , United Kingdom 2 Camden and Islington NHS Foundation Trust, Early Intervention Service , 4 Greenland Road, Camden, NW1 London , United Kingdom 3 Department of Psychology, University of Bath , BA2 7AY, 2SouthBath , United Kingdom 4 Camden and Islington NHS Foundation Trust, Psychological Therapies Services, St Pancras Hospital , 4St Pancras Way, NW1 0PE London , United Kingdom Background: Reducing treatment delay and coercive pathways to care are accepted aims for Early Intervention Services (EIS) for people experiencing first episode psychosis but how to achieve this is unclear. A one-year community awareness programme was implemented in a London EIS team, targeting staff in non-health service community organisations. The programme comprised psycho-educational workshops and EIS link workers, and offering direct referral routes to EIS. Its feasibility and its impact on duration of untreated psychosis and pathways to EIS were evaluated. Methods: Evaluation comprised: pre and post questionnaires with workshop participants assessing knowledge and attitudes to psychosis and mental health services; and a comparison of new service users' service DUP(time from first psychotic symptom to first contact with EIS) and pathways to care in the intervention year and preceding year. Focus groups sought stakeholders' views regarding the benefits and limitations of the programme and what else might promote help-seeking. Results: 41 workshops at 36 community organisations were attended by 367 staff. 19 follow up workshops were conducted and 16 services were allocated an EIS link worker. Participants' knowledge and attitudes to psychosis and attitudes to mental health services improved significantly following workshops. In the year of the intervention, only 6 of 110 new service users reached EIS directly via community organisations. For all new referrals accepted by EIS, in the intervention year compared to the previous year, there was no difference in mean or median service DUP. A clear impact on pathways to care could not be discerned. Stakeholders suggested that barriers to referral remained. These included: uncertainty about the signs of early psychosis, disengagement by young people when becoming unwell, and worries about stigma or coercive treatment from mental health services. More general, youth focused, mental health services were proposed. Conclusions: The community awareness programme did not reduce treatment delays for people experiencing first episode psychosis. Further research is needed regarding effective means to reduce duration of untreated psychosis. Although EIS services are guided to promote access through community engagement, this may not be an effective use of their limited resources. Trial registration: Current Controlled Trial ISRCTN98260910 Registered 19th May 2010. Psychosis; Early intervention; Health education - Background Long duration of psychosis (DUP) is associated with poor outcomes for people experiencing a first episode of psychosis [1,2] and poorer quality of life at first contact with services [1]. However, long DUP is common: with mean DUP of up to two years [1], and median DUP of six months or more reported [3]. Early Intervention Services (EIS), which seek to provide intensive, specialist support to young people with a first episode psychosis, have been set up internationally and were mandated nationally in England in 2000 [4]. EIS teams have a specific aim of minimising DUP [5], in order to provide effective treatment during the early critical period following onset of psychosis [6], to improve long-term outcomes [7]. However, establishing an EIS team may, by itself, not reduce DUP [8]. Recent UK studies in the context of established EIS services, have still found over a third of people with first episode psychosis with a DUP of over six months [9,10], and high proportions of service users with aversive pathways to care, including over a third via criminal justice services for Black minority ethnic groups; over half via emergency health services for most groups) [11]. Finding means to reduce treatment delays and avoid coercive pathways to care for people with first episode psychosis is therefore of high importance. Contributory factors to DUP include: lack of trust in mental health services and fear of coercion; fear of stigma and discrimination; failing to recognise problems as psychosis; not knowing where or how to access support; and unhelpful service responses [12-15]. DUP comprises several components: delays at any stage (e.g. initial help-seeking, in primary care, or within secondary mental health services) may be responsible for long DUP overall [9]. About half of DUP may typically constitute delays in initial help-seeking, before any contact with health services is made [16,17]. A systematic review of initiatives to reduce DUP [18] found that only large public awareness campaigns had in some instances been successful in reducing DUP, and that education campaigns targeting GPs had been unsuccessful [17,19]. The review concluded that initiatives to reduce DUP need to encourage initial help-seeking as well as subsequent swift health service response. It highlighted the lack of evidence about initiatives directed at workers from non-health community organisations(such as teachers, school counsellors, youth workers, housing or employment service staff, or leaders of faith groups or community organisations), who might already be supporting young people at the point of onset of psychosis, and therefore potentially able to encourage help-seeking. The role of workers in non-health community organisations in pathways to EIS care for people with FEP is not well understood and may vary in different social/ cultural contexts. A Canadian study found that nonhealth community workers are commonly involved in pathways to EIS care, and that their involvement is associated with longer DUP [20]; a British study by contrast, found an association between involvement of non-health community workers and shorter DUP [21]. A recent qualitative study of experiences of help-seeking for a first episode of psychosis in the UK [15] found that community workers were willing to support people to access help, but identified challenges to community workers involvement in help-seeking (failure to recognise difficulties, perceptions tha (...truncated)