Ethnicity, detention and early intervention: reducing inequalities and improving outcomes for black and minority ethnic patients: the ENRICH programme, a mixed-methods study

Compulsory hospital admission

Each of the 12 studies made ethnic comparisons of the rates of compulsory hospital admission during FEP. Two studies10,11 used the same data set in this comparison and so only one of these studies was included. Meta-analyses were conducted by pooling the odds ratios (ORs) across seven studies. 10,62,64–66,68,70 The remaining studies were excluded as they either descriptively reported ethnic differences or did not include raw data. Given the variation in how BME groups were categorised in individual studies, we decided to conduct multiple comparisons to ensure meaningful ethnic comparisons. Four separate meta-analyses were conducted: (1) black Caribbean compared with white British patients, (2) black Caribbean compared with non-black Caribbean patients, (3) black (i.e. black African, black Caribbean, black ‘other’) compared with non-black patients and (4) Asian compared with non-Asian patients. Studies were included more than once in each analysis when multiple ethnic comparisons were made.

Criminal justice agency involvement

The review also investigated ethnic differences in criminal justice agency involvement. We defined this as any contact with either judicial agencies or law enforcement agencies. Of the 12 studies, five11,64,66,68,70 had explored ethnic differences in relation to criminal justice agency involvement. Of these, four64,66,68,70 were of ‘moderate’ methodological quality and one was rated ‘high’. 11 Two separate sources of data were extracted from the articles by Cole et al. 68 and Burnett et al. 70 as they used two independent measures of criminal justice agency involvement. In total, two separate meta-analyses were conducted to explore ethnic variations in criminal justice agency involvement: (1) black Caribbean compared with non-black Caribbean patients and (2) black (i.e. black African, black Caribbean, black ‘other’) compared with non-black patients. All articles except that by Harrison et al. 64 were included multiple times as the authors made comparisons between multiple ethnic groups.

General practitioner involvement

Four studies11,64,68,70 explored ethnic differences in use of GP referral in pathways to care. Of these, one11 was rated high on methodological quality and the others were rated moderate. The study by Burnett et al. 70 used two measurements of GP referral, one by family members and the other by the patients themselves. Because of the lack of clarity surrounding how GP referral was determined in this study, we excluded it from the analyses.

Compulsory hospital admission

The results of the meta-analysis showed that black Caribbean patients were significantly more likely to be compulsorily detained during FEP. Specifically, black Caribbean patients were 2.39 times more likely to be detained than white British patients [95% confidence interval (CI) 1.62 to 3.52, p = 0.0001, Figure 2] and 2.13 times more likely to be detained than non-black Caribbean patients (95% CI 1.64 to 2.76, p = 0.00001, Figure 3). This finding was also true for broadly defined black patients (black Caribbean, black African and black ‘other’ patients) compared with non-black patients (2.33, 95% CI 1.85 to 2.93, p = 0.00001, Figure 4) but not for Asian patients compared with white patients (0.59, 95% CI 0.25 to 1.39, p = 0.22, Figure 5).

FIGURE 2.

Forest plot for studies included in the comparison of black Caribbean patients and white British patients for compulsory hospital admission.

FIGURE 3.

Forest plot for studies included in the comparison of black Caribbean patients and non-black Caribbean patients for compulsory hospital admission.

FIGURE 4.

Forest plot for studies included in the comparison of broadly defined black patients and non-broadly defined black patients for compulsory hospital admission.

FIGURE 5.

Forest plot for studies included in the comparison of Asian patients and white patients for compulsory hospital admission.

The following explanations were offered for ethnic variation in compulsory hospital admission.

Harrison et al. 64 found that compulsory hospital admission was significantly higher amongst black Caribbean women than amongst other British women. However, no differences were found for men across different ethnic groups. In addition, when ethnic comparisons were made for those aged < 30 years only, the increased rate of admission amongst black Caribbean patients was reduced. The authors suggested that gender and age may account for the increased detention levels amongst some BME groups.

The findings of the study by Morgan et al. 10 were in direct contrast to those of the study by Harrison et al. 64 In this study, African Caribbean men were 4.75 times more likely to experience compulsory hospital admission then white British patients (95% CI 2.41 to 9.38, p < 0.0001). Such a difference was not found for either African Caribbean women or the entire black African group. In relation to age, the authors found a higher level of compulsory hospital admissions amongst younger African Caribbean patients.

Morgan et al. 10 attempted to control for confounders using two logistic regression models. In addition to ethnicity, the first model included employment status, criminal justice agency referral, perceived risk to others, self-initiated help-seeking and diagnosis with detention as the outcome variable. In the second model, an additional interaction effect term ‘African Caribbean ethnicity against gender’ was included. The results of the first analysis demonstrated that, in addition to African Caribbean and black African ethnicity, unemployment, manic psychosis, perceived risk to others, criminal justice agency referral and self-initiated help-seeking all predicted compulsory hospital admission. In the second analysis, with the interaction effect term included, African Caribbean men were 3.52 times more likely to be detained, a rate that was higher than the unadjusted rate. Being unemployed, perceived as being a risk to others, affective psychosis and self-initiated help-seeking also remained significant in the model. It seems, therefore, that, amongst men, being African Caribbean significantly increases the risk of being detained.

Criminal justice agency involvement

The results of the meta-analyses showed that black Caribbean patients were roughly twice as likely as non-African Caribbean patients to experience criminal justice agency involvement in their pathways to care during FEP [odds ratio (OR) 2.05, 95% CI 1.51 to 2.80, p < 0.00001, Figure 6]; similarly, black patients (broadly defined) were roughly twice as likely as non-black patients to experience criminal justice agency involvement in their pathways to care during FEP (OR 2.25, 95% CI 1.74 to 2.92, p < 0.00001, Figure 7).

FIGURE 6.

Forest plot for studies included in the African Caribbean vs. non-African Caribbean comparison of criminal justice agency involvement.

FIGURE 7.

Forest plot for studies included in the broad black vs. non-black comparison of criminal justice agency involvement.

Of the five studies, only Morgan et al. 11 explored the determinants of these differences. First, the authors calculated the unadjusted ORs for all variables that predicted criminal justice agency involvement in addition to ethnicity. The results showed that unemployment, living status, diagnosis and family involvement were all associated with criminal justice agency involvement. In a multiple regression model, black African ethnicity no longer remained significant, suggesting that these variables accounted for the increased criminal justice agency involvement amongst this group.

General practitioner referral

The results of the meta-analyses suggested that black patients were significantly less likely than non-black patients to have GP involvement in their pathway to care during FEP (OR 0.51, 95% CI 0.35 to 0.72, p = 0.0001, Figure 8).

FIGURE 8.

Forest plot for studies included in the comparison of broadly defined black patients and non-broadly defined black patients for GP involvement.

Morgan et al. 10 demonstrated that, when confounders such as living circumstances, gender, help-seeking patterns and family involvement were controlled for, the odds of excess detention in black patients were significantly reduced.

Sample

All patients attending the Birmingham early intervention service (within the BSMHFT) who were able to give informed consent were invited to participate in the study. Researchers regularly screened all new referral lists for potential participants. Each eligible participant’s community psychiatric nurse (CPN) was approached to determine whether the patient was well enough to take part in terms of symptoms, general well-being and recovery. If the CPN felt that the patient was suitable, the information sheet and consent form were given to the CPN to give to the patient. If the patient agreed to meet the research team, a researcher contacted the patient to explain the study and answer any questions. The initial contact with the research team took place at a venue suitable for the patient, including in the patient’s home if requested. During the consenting process, participants were also asked if the research team could invite a carer to participate in the study. The definition of a carer for the purpose of this study was someone who had played an important role in the major decisions related to the service user’s journey to care and was identified thus by the patient. Separate informed consents were obtained from patients and their carers.

Recruitment of cases

The early intervention service in Birmingham is a highly research-active service. During the 2-year period of data collection, various other research projects were being conducted, including studies carried out by medical, clinical psychology and PhD students. It is likely that this affected patient recruitment, as care co-ordinators often reported that their patients were unwilling to engage with further lengthy assessments, or were too busy with other commitments to engage with another study. Although we approached all consecutive cases over this time, we did not recruit all eligible cases as participation was voluntary. Patients who refused initially were approached once more for participation. After the second refusal they were not approached again. We made comprehensive notes detailing reasons for non-participation. For illustrative purposes, we describe here the reasons for non-participation from one early intervention services team: 34.4% were recruited, 19.4% declined as they were not interested in research, 17.9% were unsuitable to give informed consent, 7.5% were not recruited because they were not engaging clinically with services, 6% refused without specifying a reason and the remainder refused for other reasons.

Over the 2-year study period, 499 patients were accepted into early intervention services. Of these, 31.5% were white, 20.9% were black, 36.1% were Asian and 11.4% were from other ethnic groups. In total, 66.3% of the participants were male and the average age of the sample was 22.59 years.

To ensure that our sample was representative, comparisons were made between participants recruited into the ENRICH study and the 2-year total early intervention service (EIS) intake (Table 2).

Measures

Data were collected using the following measures.

Nottingham Onset Schedule

The NOS72 is a short guided interview and rating schedule for establishing the chronology and components of symptom development in a FEP. The patient’s history is collected before the interview from medical notes and clinical correspondence to develop a preliminary timeline. This timeline is then used with the patient (and the carer if available) to guide the NOS interview. Once all available information is collected, a final timeline and the following four time points are derived (see Appendix 6):

• Prodrome. The onset of prodrome is defined as the phase of illness from the emergence of prodromal symptoms to the development of psychotic disorder. Prodromal symptoms usually include non-specific disturbance of mood, thinking, behaviour, perception and functioning. For such symptoms to be considered as part of the psychotic illness there should be no return to premorbid functioning following onset of these symptoms.

• First psychotic symptom. Unequivocal presence of one or more positive psychotic symptoms, rating 2 (minimal) or 3 (mild) on the Positive and Negative Syndrome Scale (PANSS), characterised by the definite presence of the symptom, which, though clearly evident, occurs only occasionally or intrudes on daily life mildly. In some cases this phase of illness may not be easily separated from the preceding phase.

• Definite diagnosis. A rating of ≥ 4 on any one of the positive symptoms from the PANSS or a group of positive symptoms on the PANSS with a collective rating of ≥ 7, not including those scored as 1 (absent). Symptoms should have occurred for at least 1 week (transition into psychosis).

• Date of start of antipsychotics at adequate dosage. Adequate dosage is defined as evidence that medication is being taken at ≥ 75% of the prescribed dosage and for ≥ 75% of the prescribed time. Compliance may be assumed when a patient is on home treatment or is hospitalised and there is no record of non-compliance. When a patient has initially been non-compliant, the start date of treatment recommencement and compliance is used.

Once these time points had been established, three illness phases were created, as illustrated in Figure 9:

• prodrome (early phase of illness between points A and C)

• DUP (period of FEP, between points C and D)

• duration of untreated illness (DUI) (between points A and D).

FIGURE 9.

Components in the development of FEP, as established by the NOS. Note: the thin black lines running horizontally represent the unfolding of symptoms through the various stages.

The NOS has high test–retest and inter-rater reliability72 and is a standard measure for DUP in several early intervention services. 73

Data collection procedure

After a patient had consented to participate in the study, a date, time and location for the interview were agreed between the patient and the researcher. Before the assessment began, patients were asked whether the interview could be digitally audio recorded. If they declined, one of the two researchers present at the interview conducted the interview to complete the schedules and the other made comprehensive notes for later scrutiny.

Before appointments, researchers screened medical records to create NOS, EPAS and Encounter timelines. During the interviews, participants were reminded about the reasons for the assessments and any queries/concerns were addressed. Once the sociodemographic data had been collected, the NOS and EPAS were administered. In addition, researchers listened carefully for instances of participants giving spontaneous attributions during the NOS phase of the interview. Finally, help-seeking attempts and pathways to care were determined using the ENRICH encounter form. The same procedure was followed in interviews with carers/informants.

Data coding and storage

After the interviews, two researchers rated the schedules to agree the final timelines, attributions and pathways to care. Causal attribution data were coded into categorical variables and clustered into developmental phases identified by the NOS (i.e. prodrome and FEP). Carer-informant and patient data remained separate through this process. After coding, all information was electronically input onto a secure clinical database (openCDMS), designed and hosted especially for the study by the Heart of England Mental Health Research Network (MHRN). The database is a secure password-protected interface that allows multiple researchers to input data simultaneously onto one database. Data were then output into SPSS Statistics version 20.0 (IBM Corp., Armonk, NY, USA) data files for analysis.

Data analysis

The data were analysed in an agreed sequence. We first explored ethnic variation in sociodemographic variables, clinical variables such as DUP, help-seeking and encounter variables, and symptom attributions. Descriptive statistics were used to identify trends, which were then subjected to statistical testing. Second, we identified ethnic differences in relation to pathway to care encounters using the chi-squared test. Third, we attempted to understand the determinants of these differences. Unadjusted ORs were calculated for all variables against each pathway to care encounter that was shown to have some association with ethnicity in the previous phase. Factors shown to influence these outcomes were taken forward into a logistic regression model, in addition to ethnicity, in the final and fourth stage.

Attribution analyses

It was clear, even during data collection, that participants gave multiple, sometimes conflicting, symptom attributions during both the early and the later stages of illness. We therefore devised a system to give a proportional score for each attribution type. For each illness phase (prodrome and DUP), the number of attributions given for each attribution category was divided by the overall number of attributions in that phase and then multiplied by 100. A standardised score, interpreted simply as a percentage, was therefore calculated for each of the five attribution types for each participant. When an ethnic comparison was made, the mean scores for each group were used. An example of the attribution scoring method is shown in Box 1.

Encounter analyses

The same approach was used for comparisons between each of the encounter variables. For each, we divided the number of reported categories within that variable by the overall number of help-seeking attempts. A score was then derived, which was comparable between participants and across groups when group averages were taken (e.g. participant A made 10 help-seeking attempts during the psychotic phase of her illness; three of these were with her local GP and therefore her GP help-seeking score is 30%). Further details are provided in Box 2.

Help-seeking analyses

Finally, we attempted to explore ethnic variation in help-seeking initiation and help-seeking support. In doing so, we calculated a proportional score for ‘within each participant’ and ‘within each group’. Higher scores reflect a higher rate of occurrence than lower scores. The following scores were calculated:

• help-seeking initiation scores:

  • patient only: the proportion of help-seeking initiated solely by the patient

  • patient and family: the proportion of help-seeking initiated jointly by patients and carers

  • family and friends only: the proportion of help-seeking initiated by family and friends only

  • encounter contact approached client: the proportion of help-seeking initiated by services (police and compulsory admission).

• help-seeking social support scores:

  • patient only: the proportion of encounters attended by the patient alone

  • patient and family: the proportion of encounters attended by both patient and family members

  • family only: the proportion of encounters attended by family members only.

It is important to note that these scores are not percentages because they do not add up to 100, as not every participant can be categorised.

Deprivation levels

Postcodes were collected from each participant during the interviews. In cases in which participants had recently moved, the postcode of their residency during their psychotic illness was requested. The English Indices of Deprivation (IMD) 201076 is a composite measure of deprivation in England scoring geographical location (postcode proxies) based on income level, employment, health and disability, education, skills and training, barriers to housing and services, crime, and living environment. Postcode deprivation scores were categorised into decile, with the bottom decile representing the highest levels of deprivation and the top the lowest. Each participant was then assigned to one IMD decile category, which was then used to explore ethnic differences.

Ethnic comparison of clinical variables

The descriptive statistics of the clinical factors for each ethnic group are shown in Table 5.

Prodrome length

Overall, the median prodrome length was 365 days. As with the DUI data, we dichotomised prodrome length into two groups: long prodrome length (> 365 days) and short prodrome length (≤ 365 days). Two-thirds (64%) of the white sample had a long prodrome length whereas in the BME groups the prodrome length was predominantly short (see Table 5). However, again, no significant difference was observed across all ethnic groups (χ² = 6.436, df = 3, p = 0.092). When individual BME groups were compared with the white group, a significantly shorter prodrome length was found for both the black group (B = 0.414, 95% CI 0.167 to 1.024, p = 0.05) and the Asian group (B = 0.361, 95% CI 0.152 to 0.856, p = 0.02).

Encounter pathways

The descriptive statistics of the encounter pathways for each ethnic group are shown in Table 6. During the psychotic phase of illness there was a clear trend in the types of encounters that each group made during their pathways to care. In relation to faith encounters (spiritual and religious), 41.9% of Asian patients made contact with such services at least once, compared with 20.0% of the black group, 11.1% of the ‘other’ group and 0.0% of the white group. This difference was statistically significant (χ² = 24.813, df = 3, p = 0.0001). Overall, black patients were 11 times more likely (B = 11.00, 95% CI 1.28 to 94.26, p = 0.029) and Asian patients were almost 32 times more likely (B = 31.680, 95% CI 3.99 to 251.72, p = 0.001) to experience faith encounters during their psychotic phase of illness than white patients.

We also explored the interaction between ethnicity and criminal justice agency involvement and crisis (A&E) presentations. Almost half (45.7%) of the black group had at least one criminal justice agency encounter during the psychotic phase of illness compared with one-third (32.6%) of Asian patients and a quarter (24.4%) of white patients. The black group was roughly twice as likely to experience criminal justice agency involvement then the white group (B = 2.603, 95% CI 1.006 to 6.737, p = 0.049).

Black patients had the highest number of A&E encounters, with 48.6% making contact with services on one or more occasions during their psychotic episode; comparative figures for the Asian and white groups were 18.6% and 37.8% respectively (χ² = 8.130, df = 3, p = 0.043). Asian patients were less likely to experience A&E encounters in their pathways to care (B = 0.376, 95% CI 0.142 to 0.999, p = 0.050) than white patients. No difference was found between the white and black groups (B = 1.556, 95% CI 0.635 to 3.810, p = 0.334). Black patients were less likely to make GP contact; however, no statistically significant differences were observed for GP contact between the three groups (χ² = 3.912, df = 3, p = 0.271).

Finally, we explored ethnic variation in the use of compulsory hospital admission. Table 6 shows that 57.1% of black patients experienced compulsory hospital admission compared with 22.2% of white patients, 30.2% of Asian patients and 33.3% of ‘other’ patients. These differences were significant (χ² = 11.235, df = 3, p = 0.011). Comparison with white patients, black patients were almost five times more likely to be compulsorily detained (B = 4.667, 95% CI 1.768 to 12.318, p = 0.002).

Help-seeking behaviours: help-seeking initiation and help-seeking support

We also explored ethnic variation in help-seeking behaviours, exploring phase-wise differences in help-seeking initiation within the patients’ social networks. A summary of who suggested that help should be sought is provided in Table 7. It can be seen that, during the prodromal phase of illness, participants from the black group were more likely to initiate help-seeking on their own whereas, for white and Asian patients, family members were most likely to seek help on their behalf. However, during the psychotic phase of the illness, help-seeking was predominantly initiated by the encounter contact (previous referrals) in all three groups, followed by the family members/friends or the patient (in the case of the ‘other’ group). This suggests that the referral system in health care is the main driver of the pathways to care following the emergence of psychosis.

We also explored ethnic variation in the social support available to each group during the help-seeking process, exploring who attended each appointment during the pathway to care. For all groups, help was mainly sought solely by the patient during the prodromal phase. This was followed by attendance by carers and patients jointly. During the psychotic phase, however, help-seeking was mainly a joint process by patient and carers. There were no significant differences between the ethnic groups. A summary of these results is provided in Table 8.

Symptom attributions

We explored ethnic variation in symptom attribution during each phase of the illness. We omitted the patients from the ‘other’ ethnic category as small numbers made it difficult to make meaningful comparisons.

Carers’ attribution of prodromal symptoms

There was similarity in how the carers in the three ethnic groups attributed symptoms during the prodromal phase of the illness (Figure 10). For all three groups, ‘social world’ attributions were most often cited followed by those ‘within the individual’. Both the black and white sample cited ‘natural’ causes third whereas Asian carers cited ‘supernatural’ reasons third. We further sought to explore any significant differences between the three ethnic groups across all five attribution types. A one-way analysis of variance (ANOVA) was used to compare differences in attribution scores; however, no significant differences were observed (Table 10).

FIGURE 10.

Bar chart showing ethnic variation in carers’ attribution scores during the prodromal phase of illness.

TABLE 10 - Patients’ and carers’ attribution scores for each phase of illness

Attribution type phase wise	Patient group (%)				Carer group (%)
	White (n = 4)	Black (n = 35)	Asian (n = 43)	p-value	White (n = 25)	Black (n = 13)	Asian (n = 21)	p-value
Prodromal phase
Within the individual	16.00	11.48	21.45	0.414	32.35	20.77	24.44	0.762
The social world	38.77	50.73	37.25	0.395	38.12	49.74	53.05	0.446
The natural world	10.98	6.30	6.25	0.816	20.00	15.40	1.67	0.114
The supernatural world	1.61	2.48	5.88	0.404	3.19	5.96	10.56	0.296
Unaware	32.64	29.01	29.17	0.845	6.34	8.15	10.28	0.762
Other/none given
Psychotic phase
Within the individual	16.24	11.72	16.20	0.770	61.81	37.08	27.65	0.017
The social world	7.48	6.51	2.78	0.502	22.22	29.73	18.72	0.699
The natural world	5.64	8.85	5.09	0.758	8.68	12.08	12.70	0.846
The supernatural world	8.08	13.02	40.74	0.000	0.00	0.00	33.09	0.000
Unaware	62.56	59.90	35.19	0.009	5.21	16.94	1.96	0.088
Other/none given	0.00	0.00	0.00		2.08	4.17	5.88	0.773

Carers’ attribution of psychotic symptoms

In contrast to the prodromal phase of illness, there was divergence in attribution scores across ethnic groups during the psychotic phase (Figure 11). White carers’ most dominant attribution type was ‘within the individual’ whereas Asian carers’ most dominant attribution was the ‘supernatural world’. Similar to the white group, black carers attributed the cause of symptoms predominantly to factors ‘within the individual’; however, they scored much higher for factors within the social world then either of the other two groups (see Table 10 for more details).

FIGURE 11.

Bar chart showing ethnic variation in carers’ attribution scores during the psychotic phase of illness.

The results from the one-way ANOVA showed statistically significant differences between the three groups for ‘within the individual’ (F_2,50 = 4.456, p = 0.017) and ‘supernatural world’ scores (F_2,50 = 10.433, p < 0.001) during psychosis. White carers were statistically more likely then Asian carers to attribute the cause of psychosis ‘within the individual’ (p = 0.18). Likewise, Asian carers were statistically more likely than both black (p = 0.002) and white (p < 0.001) carers to attribute the cause of psychotic symptoms to factors within the ‘supernatural world’.

Patients’ attribution of prodromal symptoms

The attribution types were ranked equally by the three ethnic groups. As with the carer data, ‘social world’ attributions were most often cited during the pre-psychotic phase of illness followed by being ‘unaware’, ‘within the individual’, ‘natural world’ and finally ‘supernatural world’ attributions (Figure 12 and see Table 10). No significant differences were observed between the groups.

FIGURE 12.

Bar chart showing ethnic variations in patients’ attribution scores during the prodromal phase of illness.

Patients’ attribution of psychotic symptoms

During the psychotic phase of illness, most of the patients reported being unaware of the cause of their symptoms (Figure 13). The highest attribution score for Asian patients was for the ‘supernatural world’ (40.74) compared with values for this attribution of 13.02 for black patients and 8.08 for white patients.

As shown in Table 10, the results of the ANOVA showed that there was a significant difference between the three groups in the scores for the ‘supernatural world’ (F_2,104 =12.394, p = 0.000) and being ‘unaware’ [F_2,104 = 4.893, p = 0.009]. Specifically, Asian patients were significantly less likely to be unaware of their symptoms than both black (p = 0.45) and white (p = 0.14) patients and significantly more likely to give ‘supernatural world’ attributions.

FIGURE 13.

Bar chart showing ethnic variations in patients’ attribution scores during the psychotic phase of illness.

Change in patients’ attributions over time

Finally, we attempted to explore how patients’ attributions changed over time, using the Wilcoxon non-parametric test statistic (Table 11). For all three groups, during the prodromal phase, ‘social world’ attributions were most dominant. However, there was a change of scores during the psychotic phase of the illness, with a significant reduction in this attribution. Conversely, ‘supernatural’ scores increased over time between the prodromal and psychotic phases of illness for all three groups. However, this was most noticeable in the Asian and black groups. For all three groups, ‘within the individual’ was one of the most stable attribution types, seeing no change over time. These trends are illustrated in Figures 14–16.

TABLE 11 - Within-group comparison of attribution score change over time

Attribution type	Prodromal phase (%)	Psychotic phase (%)	p-value	Test statistic	Standard error
Asian patients
Unaware	29.17	35.19	0.465	147.00	38.987
Individual	21.45	16.20	0.696	75.00	19.196
Social	37.25	2.78	0.000	151.00	20.724
Natural	6.25	5.09	0.680	9.00	3.640
Supernatural	5.88	40.74	0.000	185.00	24.523
Black patients
Unaware	29.01	59.90	0.001	16.00	26.540
Individual	11.48	11.72	0.389	24.00	6.964
Social	50.74	6.51	0.001	173.00	24.418
Natural	6.30	8.85	0.273	2.00	2.739
Supernatural	2.47	13.02	0.028	1.00	5.906
White patients
Unaware	32.28	62.56	0.002	70.00	43.656
Individual	16.00	16.24	0.958	67.00	19.203
Social	38.77	7.48	0.000	269.00	32.753
Natural	10.63	5.64	0.043	15.00	3.708
Supernatural	2.32	8.08	0.017	0.00	5.870

FIGURE 14.

Line graph showing attribution score change between phases for Asian patients.

FIGURE 15.

Line graph showing attribution score change between phases for black patients.

FIGURE 16.

Line graph showing attribution score change between phases for white patients.

Duration of untreated psychosis and attributions

As we found no ethnic difference in DUP, we decided to identify which variables in our data predicted long DUP. We conducted a logistic regression using variables having some putative association with DUP, including biomedical attribution (‘within the individual’) (Table 12). Rather than using the continuous attribution scoring system, we created a new dichotomous variable for ‘within the individual’ attributions in both phases. Median scores were used as a cut-off point. Of the six variables included in the model, only age and living status remained significant. Being young at the time of psychosis onset (< 18 years) and living alone significantly predicted long DUP (> 6 months), independent of biomedical attribution score.

Sample

Participants were a part of the larger quantitative cohort from study 1. These participants (users and carers) are described in the first part of this chapter and were recruited from early intervention services. During the quantitative phase of the study, patients and carers were given the choice whether or not to have their NOS interviews recorded. Of those who agreed, a subset of cases for which both the carer and the patients audio files were available was randomly selected for the qualitative phase of the study. In addition, one Asian participant who did not have a carer was included because he gave an extremely rich account of his pathways to care. Once this subset had been achieved, a research fellow purposefully identified a mixture of cases that were representative of the wider population. Special attention was given to ensure that key factors were a part of the interviews selected, including important variables such as long and short DUPs, a mixture of encounter types and involvement of both medical and non-medical help-seeking.

A total of 14 carer–patient interview dyads were selected from the full sample. The ethnic make-up of those interviewed was five black service users and five black carers; five Asian service users and four Asian carers; and four white service users and four white carers (Table 13). In total, 13 service user and 12 carer interviews were analysed.

Objective 1: to understand the dynamic, social and cultural processes that determine help-seeking behaviour and encounters with statutory services

Objective 2: to explore ethnic differences in stigma, mistrust or suspicion of services

Carers from ethnic minority backgrounds were dissatisfied with services more often than white carers, even though white carers had similar difficulties as non-white carers in accessing care. With the Asian carers, the dissatisfaction was partly related to anxiety about not knowing what was causing the illness and also to worries about not getting the right care. For example, the mother of ENR050 kept taking her daughter to the GP and struggled to understand why the GP took so long to come up with a diagnosis and provide her daughter with the right help:

Researcher: So, they referred you to CAMHS?

Carer: So, CAMHS came later. Every time I took her to the GP (every 2–3 weeks) they told me nothing was wrong but I told her I can see changes in her; she is losing weight, she looks weak, she does not eat. They then did a blood test. I was really upset and began to cry, telling them that I knew her and would not bring her out for no reason. I was really upset and began to cry.

In certain cases, carers, both black and Asian, did not appreciate or understand the need for police involvement:

I don’t understand why he should be taken to the police station and kept overnight. He had done nothing. He needed the doctor not the police. They kept him there all night and he showed us bruises on his back from the police manhandling . . . . They told us there was no bed available. How can they tell us that there is no bed available in any hospital in Birmingham? There are so many hospitals in Birmingham, why are there no seats? After three days we got a phone call from London that he was in hospital there. The atmosphere in the hospital made his condition worse as he had never witnessed anything of that sort before. We don’t really know if he needed hospitalisation. Nobody ever told us anything. He had marks on him. He told me that the police had hit him. They should not treat him like that [mother starts crying].

ENR026, carer

The family had a religious/cultural explanation of their son’s illness and found it difficult to understand why their son was taken to the police station. When the researchers met them they wanted to forget the episode as a ‘blip’ and to ‘move on’ as their son had recovered. They were also worried about his marriage prospects and did not want this incident to get in the way of future alliances from respectable families.

The lack of availability of beds, an unfamiliar hospital environment and being taken to the police station before getting care were recurrent themes in ethnic minority interviews. African Caribbean service users who had come into care through the criminal justice system felt that they were never taken seriously:

I stopped a police car and I told them that I don’t feel well and I need some help, so could they drop me home as I am hearing all of these voices. They never took me seriously and I must have went in like a tangent and they started putting handcuffs on my wrists and that lot and I was flipping out, like kicking them in their faces and then they took me to the police station. From the police station, I had to go to the court and that is where I was slashing my wrists. I was clearly unwell. If they had taken me home maybe I would not have to go to the prison and then to the hospital.

ENR014, service user

The white British narratives also reported similar difficulties and delays in finding the right help at the right time; however unlike BME users and carers, white users and carers did not mistrust services.

Ethnicity

Self-assigned ethnicity is recorded on both MHA monitoring forms and in medical records. Four broad ethnic groups were created for the purpose of the analysis: white (including Irish and other Europeans), black Caribbean and black African, Asian (including Indian, Pakistani, Bangladeshi and Sri Lankan) and ‘other’ (including Chinese and Vietnamese). Mixed-race individuals were included in the ‘other’ category if they were not assigned to the black, white or Asian categories on the MHA monitoring form or in medical records.

Risk

Data on risk were obtained from MHA monitoring forms using the following categories: self-harm, self-neglect, deterioration in mental state, harm to other people, harm to property and harm to vulnerable others.

Data sources

Details of the MHA assessment are recorded by the AMHP using two forms, SS101 and CR6B (see Appendix 9). The SS101 records basic demographic information about the service user assessed, as well as basic information about location of assessment, current legal status under the MHA and outcome of assessment.

The CR6B form provides:

• details of the last/previous admission

• the circumstances leading to assessment/reassessment

• a record of interviews and discussions (a) with the service user, (b) with regard to the assessment of risk to the service user and others, (c) with nearest relatives and others and (d) with doctors and other professional staff

• the service user’s social situation, including (a) accomodation, (b) employment situation and (c) family and social relationships

• the reason for the decision, including consideration of alternatives, advance decision and appropriate medical treatment.

Data were collected under the following headings:

• setting of the assessment – where the assessment was conducted (venue, day, time), the individuals (including discipline and role) involved in the assessment and whether a carer/family member was present

• patient characteristics – sociodemographic variables such as age, gender, self-ascribed ethnicity, residential status, level of community and social support; and clinical variables including diagnosis, type and magnitude of risk and the compatibility of clinical presentation with legal criteria for detention

• service characteristics – local bed availability, availability of alternatives to detention and provision of specialist outreach services

• factors determining outcome – including diagnosis, risk, alternative community treatment being available, the home treatment team able to manage the service user in the community, and voluntary admission from the service user.

Data collection

Before starting data collection, researchers arranged a meeting with the ASWs/AMHPs in the BSMHFT to describe the study, answer any queries and request that ASWs/AMHPs ensure that the SS101 and CR6B forms were completed in as much detail as possible. After some initial ambivalence related to whether the study was a way of scrutinising clinical practice, ASWs/AMHPs became willing and enthusiastic supporters of the project. Data were collected through the CR6B forms from AMHPs/ASWs and cross-checked against electronic patient notes. This information was collated and encoded at each site using PASW Statistics (version 18.0, SPSS Inc., Chicago, IL, USA). A copy of the coding manual can be found in Appendix 10.

The research team made weekly contact with the clinical teams, including on-call clinicians and crisis resolution/home treatment teams at each site, to identify all MHA assessments conducted in the previous week. Details of the MHA assessments are recorded by the AMHPs using the CR6B form. The format of the form and the level of detail varied depending on the site of collection and the AMHP recording the information. To ensure consistent and reliable data collection, a consistent coding regime was used (see Appendix 10) and all assessments were cross-checked with the data set of MHA assessments held by social services. For each site, patient electronic databases were utilised to ensure that as much information as possible was supplied to the research team by the AMHPs. Information from the assessment documentation was coded and input using SPSS statistical analysis software (SPSS Inc, Chicago, IL, USA).

Sample

In the year April 2009–March 2010, 1115 MHA 20072 assessments were conducted in the BSMHFT. These 1115 assessments were made on 863 individuals (some of whom were assessed more than once during the study period) having a mean age of 40.12 (SD 14.75) years and of whom 60.3% were men. Of the 1115 assessments, 709 led to detentions (63.6%). The ethnic profile of those assessed was 51% white British, 14.8% Asian/Asian British Pakistani, 13.9% black/black British Caribbean, 7% black/black British African, 5.6% Asian/Asian British Indian, 1.6% Asian/Asian British Bangladeshi, 2.5% mixed ethnicity, 3.1% ‘other’ and 0.5% refused to say. Of the individuals assessed, 443 (51.3%) had had a previous hospital admission. Substance misuse was reported in 295 (34.2%) individual cases. The diagnostic composition of the cohort was 48.1% schizophrenia, schizotypal and delusional disorders [International Classification of Diseases, Tenth Edition (ICD-10)79 diagnostic codes F20–29], 25.3% mood (affective) disorders (F30–F39) and 4.8% disorders of adult personality and behaviour (F60–F69).

Ethnicity and frequency of assessments

Table 14 provides the numbers of individuals assessed (total n = 863) within the different ethnic groups compared with the total number of service users accessing BSMHFT services in 2009–10 (total n = 52,063) and the ethnic population estimates for Birmingham in 2009 (www.birmingham.gov.uk) for each group. The results reveal that a significantly greater proportion of patients accessing the BSMHFT from a BME background than those from a white British background were assessed under the MHA (χ² = 415.0842, df = 5, p < 0.001). There were significant differences between the ethnic groups in the proportion of MHA assessments compared with the ethnic population estimates for Birmingham in 2009 (χ² = 335.8437, df = 5, p < 0.001).

Ethnicity and detention

Of the 863 individuals assessed, 561 were detained at least once. Table 15 provides the number of detentions for each ethnic group as well as the proportion (%) of detentions within each ethnic group compared with the total number of service users (n = 52,063) accessing the BSMHFT in 2009–2010 and the ethnic population estimates for Birmingham in 2009.

Chi-square analysis revealed significant differences in detention rates under the MHA between the different ethnic groups when compared with the total number of patients accessing the BSMHFT (χ² = 259.7323, df = 5, p < 0.001) and the ethnic population estimates for Birmingham in 2009 (χ² = 232.3088, df = 5, p < 0.001).

Post hoc analysis

Post hoc analysis was conducted to investigate the differences between all of the ethnic groups in rates of assessment and detention within the two denominator populations of BSMHFT service users (Table 16) and the ethnic population estimates for Birmingham in 2009 (Table 17). Compared with patients accessing the BSMHFT, a significantly larger proportion of patients from a BME background were assessed and detained than white British/white ‘other’ patients. Within the BME groups, patients of black/black British African/African ‘other’ ethnicity were significantly more likely to be assessed and detained than those from any other ethnic group (see Table 16).

Compared with the ethnic population estimates for Birmingham in 2009, a significantly larger proportion of individuals of Asian/Asian British Pakistani, Black/black British Caribbean and Black/black British African/African ‘other’ ethnicity were assessed and detained than individuals of white British/white ‘other’ ethnicity (see Table 17). Within the BME groups, individuals of black/black British African/African ‘other’ and black/black British Caribbean ethnicity were significantly more likely to be assessed and detained than those of Asian/Asian British Pakistani/Indian and Bangladeshi ethnicity. In addition, individuals of Asian/Asian British Pakistani ethnicity were significantly more likely to be assessed than those of Asian/Asian British Bangladeshi ethnicity.

Ethnicity, multiple assessments and multiple detentions

Table 18 shows the mean (range) number of times assessed and detained for each ethnic group. Because of the non-normal distribution of data for multiple assessments and multiple detentions, Kruskal–Wallis one-way ANOVA was used to test for overall differences. There were no ethnic differences between multiple assessments (χ² = 3.815, df = 5, p = 0.576) and multiple detentions (χ² = 5.248, df = 5, p = 0.386).

Predictors of assessment and detention

Univariate analyses were conducted to identify sociodemographic and clinical variables that statistically differed between ethnic groups (Table 19). Because of the small numbers in some BME groups, we pooled the ethnicity data into broad black, white and Asian groups. Six variables were checked for co-linearity with each of the five other factors using Pearson’s correlation and then used to model detention. A logistic regression model was constructed to predict the outcome of a patient’s mental health assessment (either ‘resulted in detention’ or ‘no detention’) using SPSS statistical analysis software. Variables were entered into the model and identified as categorical when appropriate. The ENTER method was used to force inclusion of all factors into the final model in which model coefficients could be easily compared. Variables with more than two categories were tested for significance both as combined factors and as individual categories, which allows the overall effect of the variable to be captured alongside the effects of each category. ORs and 95% CIs were computed for each individual category.

In the total assessed population, detention was predicted by having a mental illness, the presence of risk, age > 35 years and living in supported accommodation. Ethnicity was not a predictor of detention under the MHA (Table 20). We repeated the analysis restricting the ethnicity breakdown to the three largest groups, which also had the most disproportionate rates of assessment and detention under the MHA. These were the Pakistani, black Caribbean and black African groups. Compared with the white group, ethnicity was still not an independent predictor of detention.

Pilot and development of topic guides

Separate topic guides were devised for each of the groups to be interviewed (carers, AMHPs and Section 12 doctors). To devise the topic guides for the professionals, informal interviews were conducted with the operational leads (service managers) of four areas within the BSMHFT. The analysis of these interviews shaped the development of the topic guides. The questions for the qualitative interviews with carers were devised on the basis of our quantitative findings and the aims of the qualitative component of the research. Each of these topic guides was approved by the ethical lead of social services for Birmingham and Solihull.

Sample

The study team stratified the quantitative data set by ethnicity and then randomly selected five cases from each of the ethnic groups. Contact was made with care co-ordinators to obtain permission to contact service users. Contact was then made with service users and verbal consent received (the date of the verbal consent was recorded) to contact their carers and respective professionals involved in the assessment process. If the service user declined participation, further potential participants were randomly selected from the cohort of users of the same ethnicity. Once verbal consent was received, contact was made with carers by telephone and also a letter was sent explaining the study. Once carer interviews were conducted, contact was made with the professionals and interviews were conducted across the trust at their venue of choice.

Interviews were conducted by two researchers with both researchers making detailed ethnographic notes about the major themes emerging in the interview. These notes provided the context and background to the larger thematic analysis to follow. All interviews except one were audio recorded (one Caribbean carer did not give us permission to record the interview). Extensive notes were taken by the second interviewer while the lead interviewer asked questions. The interviewers typed up these notes together to maintain accuracy in representation. The same procedure was followed in the professional interviews. The professionals were given notice and details about the episodes that the researchers were going to speak to them about. Some of them used medical notes to remind themselves about the details around the outcomes of the assessments. In some cases, researchers provided professionals with the CR6B form for the assessment to assist them with remembering the details of the case.

Recruitment

A total of 46 service users were contacted from the five different ethnic groups. The black African group and the British Indian group were the hardest to engage, with most refusals coming from the British Indian group. The study failed to recruit from the black African sample as some of them were clinically unwell or had moved away.

A total of 11 service users consented for us to contact their carers – five British Pakistani, two British Caribbean, one British Indian, one white British and two mixed parentage (one white–Asian, one black Caribbean–white) service users (Table 21). Although mixed parentage was not part of our inclusion criteria, these service users were included in the final analysis because EPEX (electronic medical records database) identified these cases as white and black and once we met the respective carers we realised that they were of mixed lineage.

In seven out of the 11 cases, the outcome was detention under Section 3 and in three cases the outcome was detention under Section 2; in the other case the outcome was intensive community treatment. Eight of the 11 carers were women (mothers and partners) and three were men (one brother and two fathers).

Once the carer interviews had been conducted, the Section 12 doctors and AMHPs present at the MHA assessments were tracked to complete the case study. Tracking professionals was a major challenge as some had moved jobs or felt too busy to participate. A total of six AMHP interviews and four Section 12 doctor interviews were conducted (Tables 22 and 23 show the ethnic breakdown of the AMHPs and Section 12 doctors respectively), making a total of 21 interviews for the qualitative component of study 2. There were three cases in the entire data set for which all three interviews were conducted (carer, AMHP and Section 12 Doctor). These interviews were analysed separately and treated as complete cases.

Carers’ experiences of services

Professionals’ views and experiences

Sociodemographic information sheet

Service users and carers were asked to complete a basic sociodemographic information sheet recording age, date of birth, gender, ethnicity, religious affiliation, living and employment status, postcode and other demographics (see Appendices 2 and 8).

Ethnicity was recorded in two ways. First, participants were asked to describe their ethnicity in their own words. This was then recorded on the demographics information sheet verbatim. Second, a list of census categories was presented to participants and they were asked to check the box that they felt best represented their ethnic group.

Procedure for all focus groups

Before each focus group the facilitator described the study and asked participants again if they were happy to participate. Participants were asked to sign a consent form. All participants were asked if the focus group could be audio recorded and whether they were happy for anonymised quotes to be used in the report and any future publications.

Mapping

A total of 138 organisations were identified as having a BME focus out of a possible 487. Table 24 highlights the numbers of organisations that were identified.

The BSMHFT intranet ‘Find a Local Group’ page was accessed in November 2009. There were 48 local user and carer organisations listed at that time; out of these, only three organisations had a BME focus. Unfortunately, two of these were no longer functioning. Details of all of the relevant voluntary and community organisations are listed in Appendix 10.

Recruitment of the sample

When convening focus groups, we aimed to represent the ethnic mix within each locality in the city. A maximum number of 10 participants were recruited for each focus group. Before commencement of the focus group, service users and carers were also asked to complete the sociodemographic information sheet. Focus groups lasted up to 90 mintues and all those participating were provided with refreshments. In addition, participating service users and carers were given £10 as a token of appreciation for their time.

In total, 13 focus groups were convened. Six service user groups were conducted, including service users from the four early intervention service teams across Birmingham East and North, East and West (Heart of Birmingham) and South. These included people from a variety of ethnic backgrounds. Three carer focus groups were conducted with current carers of BME service users who accessed the early intervention service in Birmingham. Four separate focus groups were also conducted with service providers across Birmingham. These included:

• professionals working within the early intervention service in Birmingham

• West Midlands commissioners

• voluntary and commnity group representatives across Birmingham

• spiritual care representatives within the trust.

Preliminary data analysis highlighted the importance of understanding how issues of religion and spirituality were addressed in early intervention services. Hence, it was decided that a separate focus group be conducted with representatives of the spiritual care team within the trust.

All participants agreed for focus group discussions to be recorded. However, one service user, one carer and two professionals declined to have any direct quotes used in the report or any arising publications.

Service user focus groups

Following the presentations, each team appointed a member of staff (usually an assistant psychologist) to act as a main point of contact for each team. This team member would liaise with care co-ordinators to confirm whether any suitable service users could be identified and then inform the research team. These individuals were called/e-mailed on a fortnightly basis over a period of approximately 12 weeks. Only one individual was identified through this process.

Because of the lack of response from professionals at the early intervention service it was decided that a researcher would visit the early intervention service base once a week (generally after multidisciplinary team meetings) and speak to service managers and clinicians directly. This proved to be the most successful method of gaining information about potential participants. Initially, care co-ordinators asked any potential participants if they were happy to take part in study 3. If a potential participant agreed to be contacted by the researchers, one of the research team telephoned him or her to briefly inform him or her of the study and explain that a letter of invitation along with more detailed information would be sent in the post. This was followed by a telephone call from the research team to confirm whether he or she was willing to participate in the study. Figure 17 shows the recruitment process for service users.

FIGURE 17.

Attrition chart: recruitment route for service users.

In total, 80 potential participants were identified of whom 24 (including the pilot) were recruited to the study. The main reasons for non-participation were service users declining participation and not meeting the inclusion criteria because they were not from a BME group.

Carer focus groups

Potential carer participants were idenitifed from a range of sources including two voluntary/community organisations, the ENRICH programme study 1 team, service users (who had participated in the service user focus groups), a PhD student and one care co-ordinator from the early intervention service. Intitally, the agreement of service users was sought before carers were approached. Once service users agreed to participate, the same procedure used for recruiting service users was used to recruit carers.

In total, 14 carers were recruited of whom three did not meet the inclusion criteria for particpation in the study and therefore formed the pilot carer focus group. These three carers were idenitifed by a voluntary/community organisation as being suitable for the study. Details of the numbers of carers contacted and the 11 recruited for the three focus groups are shown in Figure 18.

FIGURE 18.

Attrition chart: recruitment route for carers.

Focus group with voluntary and community organisation representatives

All 40 voluntary organisations identifed (see Appendix 12) as serving BME mental health service users and carers (see Mapping) were contacted by one of the research team. Initially, organisations were telephoned and then the study information sheet and leaflet were e-mailed or posted to the relevant individual at each organisation. This was followed up by a telephone call inviting members to attend a focus group and asking for verbal consent along with an e-mail confirming the focus group details, asking the recipient for a confirmation e-mail of attendance or non-attendance. When the researchers did not receive a response an additional telephone call was made to confirm attendance.

Out of the 40 organisations contacted, representatives from six agreed to participate. Of the six, only two had an understanding of the early intervention service. Most organisations were unaware of the early intervention service and its remit.

Focus group with commissioners

To ensure that commissoners took part in a focus group, the principal investigator liaised with the lead for the West Midlands comissioners group. It was decided that the focus group be held at the end of the commisionners’ regular monthly meeting. Before this, the senior researcher sent study 3 information sheets and leaflets to the lead comissioner for distribution. All 10 commissioners who were present at the meeting agreed to participate.

Focus group with professionals

An e-mail was circulated to all early intervention service staff members (n = 90) and the senior researcher visited each individual team base to discuss the study. Nine interested clinicians were finally recruited.

Focus group with spiritual care representatives

In liaison with the head of spiritual care in the BSMHFT, a total of 11 spiritual care representatives were contacted. Eight representatives were finally recruited.

Crisis

The majority of service users reached mental health services through a ‘crisis’. Even in cases in which carers recognised the need for medical help, help was not sought until service users reached a ‘crisis’ point. For most, help was not sought until the patient was perceived as dangerous either to themselves or to others:

Three times I called 999 to come and help me, they said he’s not a small boy, this boy I said I was fearing will die, so it went all like that on Saturday and I was thinking, he ran in the cold, he opened all the windows, it was very cold. He told me he had clothes on, so later I had to call the police then they came, no I called the ambulance and I told them that he was going to died, I have made a note of all the calls I have made.

C3, black British female

Carers experienced frustration, anger and emotional turmoil as a result of not being able to access appropriate mental health services sooner: ‘It’s so upsetting though isn’t it like because when you talk about it, it still hits you that you’ve had to struggle to get that help’ (C13, mixed white and black African female).

Accessing services through crisis meant that quite often patients were detained under the MHA in community settings, leading to additional distress because of shame and social stigma (see Social stigma and shame). Police presence was generally viewed as negative. The general consensus held by spiritual care representatives was that every effort needs to be made to make legal detention ‘a private event’:

No, it’s better to go, not with the ambulance but maybe a private car, not drive up with an ambulance and you know this, they don’t like that. That will make them more aggressive, okay, but with a private car, they go with a chaplin or a priest and, get the person somewhere private, and then section the person. But they shouldn’t do it in the community, that’s one, especially in the BME community. Once they see an ambulance pull up at the gate, you know, people will start to look out through their windows, people will start to come across, they don’t like that.

SC5

Invisible carers

The majority of carers raised concerns about the failure of GPs to listen to and address their concerns: ‘Why is it such a battle to get them to recognise what the parent is saying you know I was so angry, that’s my child, I know my child’ (C12, black British Caribbean female).

In some cases, GPs were not happy for carers to speak on behalf of service users and preferred to speak to service users directly. However, carers were frustrated with this and believed that they had to speak on behalf of service users as quite often service users were ‘in denial’ and had little insight:

They should do right, so there’s no point them sitting back telling us as a parent we’re not the ones to speak the volume. Yes we are the ones to speak the volumes because the child or the person that’s sick cannot identify, ‘I’m sick’, they are in denial. They know that these people are in denial because they don’t know that is an illness.

C12, black British Caribbean female

In some cases, carers obtained appropriate medical support by exaggerating service users’ symptoms: ‘I got the police involved, we called the police, something’s wrong, I had to tell lies . . . he’s going to do something because he’s talking about the Taliban’ (C12, black British Caribbean female).

Help was also sought through alternative avenues such as through the local radio station (C12, black British Caribbean female), by writing to a local MP (C13, mixed white and black African female) and, in one case, by contacting a tenant support officer who contacted the early intervention service (C14, black British Caribbean female).

Carers and voluntary and community organisation representatives believed that GPs needed further training in detecting the symptoms of mental illness and in understanding that carers were best placed to detect any changes in behaviour (symptoms) of the service user. The consensus was that GPs lacked knowledge of appropriate mental health services (including voluntary and community organisations) and failed to signpost service users or provide appropriate treatment or ensure adequate follow-up:

I think when we go to see the doctor, the doctor needs to know what we tell them, what our problem is and to understand and you know, know the diagnosis straight away almost, or something along that line.

C13, mixed white and black African female

I mean for me, I work with carers so we have to look after the carers, you know, and this is what they say time and time again, you know, and they know, the person, more than the doctors, more than, anybody else, so surely they should be listened to.

V20

That is a big worry, because sometimes you have to look into professional and the providers, because provider is directly working with the service users, so I mean, commissioning side as well, they don’t have much knowledge about mental health, I’m not quite happy with the GP services, or the GP is not qualified on mental health, without listening they’re prescribing the medication, plus they’re not explaining them, what will be the side effects of this medication.

V16

The majority of voluntary and community organisation representatives also stated that carers needed support. Some carers had their own mental health problems and financial worries but were unaware that as ‘carers’ they were entitled to certain benefits and support:

The main problem that service users, carers have, is the mental health, secondly it’s financial, thirdly it’s housing and, so these are regular issues that will crop up with everybody you see, it, if, mentally they’re fine, they’ve got problems with their finances, their benefits, you know, at the moment, in the next years, everybody’s gonna be affected, so they’re worried, they’re worried now, what’s gonna happen in 2 years. Also with the housing, a lot of issues are neighbours, you know, that have anti-social behaviour . . . and it adds to their mental health and their worries.

V20

The avenues available to deal with carer issues were generally deemed to be insufficient because of recent government cutbacks.

Service users who were unable to obtain appropriate support were often left reliant on family and friends. This was not necessarily deemed beneficial when those called on for support lacked knowledge and understanding of mental illness and the appropriate services available for treatment:

If your family and friends around you don’t know what to do and you’re relying on them, to try and support you, it’s really difficult, because, I mean they didn’t know what to do . . . if they . . . haven’t got any professional help for it, you’re stuck.

V15

Mistrust of services

Some commissioners, early intervention professionals and voluntary and community organistion representatives felt that BME communities mistrusted services and that this contributed to a delay in help-seeking:

Asian community or African Caribbean community think, well, we’re gonna lose all control over this, because they’ll take us on a path where we may not want, we may not want medication, we may not want this, we may not want that, but then they lose control don’t they? And then you get child protection issues coming in . . . And I think there is an element of losing control . . . And you hide them in the community as well, until it’s really too late, you know, and then it comes to crisis point.

COM6

I think they . . . some of the African Caribbean community . . . [take] a very rational view that mental health services are punitive, they’re sectioning a lot of them . . . isn’t that the cycle where therefore people don’t come forward until they’re at their most critical and key stages. Therefore when they do come forward it’s likely to be the police bringing them in, which is, is it half of the admissions for African Caribbean male is, is by the police, which, which goes to prove that, you get that cycle, it just goes to prove that’s what mental health systems do for you. And if you’re an African Caribbean man you don’t go anywhere near them, so you, so it kind of, so it’s breaking that.

COM4

They suggested that trust could be established by promoting services within local communities: ‘I feel that when they’ve got trust in an organisation, it’s brilliant, they’ll always land on your doorstep, and especially if there are local communities promoting it and saying, “I’ve accessed it and its brilliant”’ (V15).

Voluntary and community organisations also regarded themselves as having a key role in empowering services users, by educating them about treatment and support options as well as self-management techniques, which ultimately gave them a sense of independence:

They [service users] have to look into the self-management and self-care. You have to be independent, you should not be dependent on people, because they don’t get any support from family members . . . we are building and we are empowering the women to build the confidence.

V16

Culture and beliefs

All service users and their carers held multiple explanatory models and ‘exploratory maps’ of illness, which were often competing and contrasting as well as interchangeable. Some carers cited religious and cultural beliefs as explanations for intial symptoms of mental illness, such as supernatural forces or black magic. For others, fear of being unwell had an important role in consolidating beliefs in religious and cultural explanations of illness. Religion gave them a sense of structure and purpose, and a framework within which to understand emerging symptoms:

Right and this went on for a period of time where it was getting worse for him, myself I started to think as a black person there was something wrong, I thought there’s a ghost in the place.

C12, black British Caribbean female

If I did I didn’t go through what I did, I wouldn’t be as humble or as worshipping of God as I am or as grateful as I am now to God. So I’m kind of, I’m actually a grateful person and a very lucky person because to go through what I went through it goes to show that I’m in God’s memory, God hasn’t forgotten me you know.

SU20, Asian British Pakistani male

Voluntary and community representatives felt strongly that religious and cultural explanations of symptoms were a key factor in delaying help-seeking amongst BME groups:

When there’s an issue about, you know, like, ‘Oh she’s, this person’s possessed, or that, or there’s something wrong’, ‘Oh, go to the Imam’, or, you know, like I know a lot of women say to me, ‘Oh I phoned up the helpline on one of the TV’s, Islamic TV’s’, ‘I’ve spoken to the Imam over the phone’.

V15

There’s a lot of, this thing about black magic and . . . possessions and things . . . you know, ‘We feel somebody’s done something to us, who do we go to?’ . . . so at that point . . . do I say to them, ‘Okay, maybe you need to go to mental health service’, . . . people are just quite. . . quick to judge, you know, a slight calamity in the family or a slight thing happens, you know, they’re quite quick to say, ‘Okay it must have been the neighbours who’ve done something to me’, you know, or, ‘Somebody’s come and possessed him’.

V20

Other explanations for the delay in help-seeking included perceived gender roles: ‘with them [Irish men] it’s mainly the issue of, because they’re men, they’re less likely to ask for the help, so, that’s, in their culture, I think it’s the sort of macho type, figure that they’re trying to portray’ (V17).

The role of faith

For some carers, their spiritual and religious beliefs and support system were paramount for their own psychosocial well-being and that of the service users:

I have had support from the Church, my friends, I have people who organise prayer for me, pray for him you know. All these things you know when I don’t have the strength on my own, you know at times you can be so down that you cannot open your mouth to pray, at that time, you need people to pray for you.

C3, black British African female

For the majority of service users and carers such as family members as well as community members and friends, faith played an important role in help-seeking. Help-seeking included visiting multiple faith and spiritual healers:

Something’s breathing on him, how can it be possible that he’s feeling something directly blowing into his face and got my son to start thinking something. So of course I did the right thing . . . we got a vicar, I took him up to the flat, he blessed the place and as a black person that’s what’s we’d done.

C12, black British Caribbean female

I thought I would take any help I could get . . . I know you’re supposed to believe in God but I did actually believe that he’s a person of God and he’s got some spiritual thing with him to help me.

SU7, Asian British Pakistani female

In their quest for faith/spiritual healing some carers were willing to travel to other cities and countries to seek the support of more ‘powerful’ faith/spiritual healers:

I believed to be honest that the vicar just wasn’t strong enough, powerful enough to me . . . I actually went to another Church which was a Catholic Church because we believe in the Catholic people, if you’re blessed by a Catholic Priest or what so ever, they are much stronger and powerful.

C12, black British Caribbean female

My mom, cos she was from . . . well is from Pakistan, their like I’ll take you to Pakistan and you’ll get better, I’ll take you to the ‘Delbar’ like spiritual [healer].

SU13, Asian British Pakistani female

For the majority of service users who sought the support of faith/spiritual healers, this practice proved to be beneficial: ‘I went to see him again just to get like duaa and stuff with special power and stuff as well . . . I found that useful, it kind of like calmed me down and helped me’ (SU7, Asian British Pakistani female).

Some service users also continued to visit faith healers after coming to early intervention services: ‘like I always go to his [faith healer] talks now once a week, and he talks to you’ (SU20, Asian British Pakistani male).

However, a few service users also talked about the negative aspects of visiting faith/spiritual healers. These individuals discussed their experiences of being the victims of ‘charlatans’:

He asked me for £500 . . . I actually went to the cash point withdrew £500, . . . he gave me that egg anyway and he goes when you gonna go somewhere far, throw it over you shoulder and pray for what you want and don’t look back and walk away and don’t go back there again.

SU13, Asian British Pakistani female

The issue of service users being on the receiving end of such ‘fake experts’ was also raised by spiritual care representatives.

A minority of commissioners stated that it was not just BME service users who favoured seeking support from faith leaders. One gave examples of similar faith-based help-seeking from the indigenous white population:

I think in Staffordshire we have a very low BME population . . . And I think it’s just the point of, the first point of contact, for a lot of our communities [white British], isn’t the GP or isn’t anything like that, it is very much, you know, churches and, and . . ., you know, some of our local churches, actually, support people with what, you know, what we would regard as quite sort of severe mental health issues, and they never actually come into, services, because, actually, the, the community worker, the volunteer goes out at two o’clock in the morning and goes there at, you know, six in the morning, to make sure people are having their breakfast and all sorts of things like that, and they, they sort of support people, in that way really.

COM9

A few commissioners also went on to suggest that the mental well-being of BME service users was much higher than that of the indigenous white population as a result of having ‘stronger social networks’ and avenues for alternative help-seeking and support:

The mental well-being of the BME population is much higher than the white population and, the significant . . . reasons for that being, that the social networks are, much stronger and where they go for support and other things like that and there are actually quite some differences, and, particularly between Polish and the South Asian as well.

COM9

In contrast to this, a minority of professionals stressed that those who were in receipt of family support had a longer DUP as carers ‘absorbed stresses’. Equally, those deemed as not having any support had a far shorter DUP and came in to services far sooner:

The longest kind of DUPs if you like the ones where you’ve got the family support and they absorb a lot of the stresses going on. The ones that are found very quickly usually are the ones without a family . . . and these guys are found running out into the street being very positive with their thing, because they’ve got nobody there supporting them and helping them through that thing.

P5

This view was also reiterated by a few voluntary and community representatives. They stated that it was lack of knowledge and understanding held by family members that resulted in BME service users having a longer DUP:

It was a case that you were stuck in a cycle, so if your family and friends around you don’t know what to do and you’re relying on them, to try and support you, it’s really difficult, because, I mean they didn’t know what to do.’

V15

Some carers did not discuss the issue of mental illness with their faith community because of fear of facing negative reactions as a result of lack of knowledge and understanding:

No I didn’t tell the church, I kept it secret from the church members, I didn’t tell them. I don’t think they would have understood.

C14, black British Caribbean female

I didn’t tell the church, I go to church as well, I don’t think they could help you know, they wouldn’t understand.

C1, black British Caribbean male

Ambiguity and uncertainty/interchangeable belief systems

There was also evidence of ambiguity and uncertainty in relation to both explanations of symptoms and cultural understandings of mental illness, especially amongst second-generation service users who felt that their parents and community members believed in black magic whereas they were unsure:

Yeah and people say I was [victim of] black magic and I don’t know.

SU21, Asian British Pakisitani male

I still don’t quite understand why I got ill . . . they say my sister-in-law . . . is evil . . . They say that but how can she be like that?

SU22, Asian British Pakistani male

Some service users thought that they were being punished for bad deeds and that they were in fact victims of ‘karma’:

I don’t know if someone could explain to me what’s happened, what is it, maybe I’ve done something wrong because I felt all this happened because I’ve done wrong in my life.

SU22, Asian British Pakistani male

It’s karma yeah, it is karma where in the sense if you do bad, you’ve just got to be always good and have a positive outlook and then worship God and remember God as you can because I did go a bit arrogant I was doing kick boxing and I was winning and I was suffering and stuff but it didn’t bother me, my ego was higher than anything I thought I was indestructible and to the point where I didn’t believe in God.

SU20, Asian British Pakistani male

Cultural beliefs often competed and contrasted with medical or genetic explanations:

My mother believes that cure will come from God, that God will come through and I believe that as well, obviously medicine is here for a reason as well so . . .

SU15, Asian British Pakistani female

Because they [parents] were confused . . . they’d go in a spiritually way and say okay we’ll call a pir [holy man] or . . . we’ll deal with it that way or we’ll call the doctor and they decided to call the doctor.

SU22, Asian British Pakistani male

Even when service users and carers recognised that substance and alcohol abuse were potential causes of developing psychosis these beliefs were interchangeable with cultural/religious belief systems:

I totally agree with what she’s saying it’s true I do hear voices cos I smoked cannabis . . . I’ve cut down but I used to smoke heavy didn’t I but I’ve cut back now . . ., I do hear voices strongly when I smoked.

SU12, mixed white and black Caribbean male

As soon as we smoke weed or we have alcohol we’re not pure, our bodies are not pure so we are prone to attack from evil forces.

SU20, Asian British Pakistani male

Knowledge and understanding

Lack of knowledge and understanding was highlighted as a key barrier to delaying appropriate help-seeking by commissioners and voluntary and community organisation representatives: ‘it’s not that they don’t, don’t want to access the service, it’s just they don’t even know about the services. They’re not aware of it for one’ (V18). However, commissioners believed that this issue was partly being addressed by community development workers through their role as ‘peer educators’ (COM4):

But our Mental Health Trust has community development workers, so I’d like to think that part of their role is, they should know about the EIS [early intervention service], we work for that organisation, and their job is to go out and raise awareness of mental health. So I’m not saying that’s a whole answer but, you know, I do think it’s part of their role to, you know, because they do know that EI [early intervention] exists whereas the vast majority of professionals, GPs are like, wouldn’t know what an EIS was.

COM7

Social stigma and shame

The fear of social stigma and shame emerged as a key factor in delayed help-seeking in all focus groups, particularly in the Asian communities:

In certain minority cultures, mental health needs are stigmatised a lot more than they are, even in Western, in Western cultures. So there may be either reluctance or unwillingness to recognise, the early stages of psychosis and what they are.

COM3

I want to start using the word ‘shame’ because, that’s how the patients feel, but because of the culture around them, they, they feel, a failure, they feel, labelled, they feel they’re doing the wrong thing . . . and because of the, attitude of the local community, they, they then feel very fearful of, of coming out or meeting anybody. And the whole thing goes round in a circle and gets bigger and bigger, see what I mean?

SC7

It’s not just the BME community, it’s the wider community, but obviously the BME community . . . it affects them even more, cause, you know, your honour, your status, your privilege, you know, it all depends on your state of mind and what you provide to society, you know, unfortunately they tend to be less tolerant if you do have a mental illness, no matter what you do, people will look your illness first and then look at your job title, so they can even dismiss a Prime Minister if he has got a mental health problem, so that’s the level, you know, the stigma, so, you know, so people quite rightly hide it or deny it, for that reason.

V20

Voluntary and community organistation representatives and spiritual care representatives emphasised that the label of mental illness held repercussions for carers and family members, affecting marriage prospects and positions within communities: ‘Sometimes people think mental health is kind of a disease that will catch people’ (V16). A few spiritual care representatives reiterated this point by giving examples of how they faced social stigma by working with mental health service users:

Unfortunately, stigma is not only with them with us as well, one of my friends, . . . he said, ‘If you work in a mental hospital, you must have been affected by it, and I don’t like to be affected by you’.

SC6

Equally, a voluntary and community representative stated that the stigma held around the label of mental illness was a factor in why BME communities failed to attend local mental health awareness-related events:

Because I find that there’s a really big issue with engaging with, in workshops, cause that’s what we’re there for, to do the workshops, but they won’t come, like you’ll find, there’s an issue, cause as soon as you advertise a workshop, and say, you know, you have to almost hide the fact you’re not gonna be talking about mental health.

V15

As a result of this, it was feared that people who needed the support of services were failing to reach services until they reached a crisis point:

From what I’ve learnt there’s a huge amount of mental illness out there in the community which is not being picked up, and I hadn’t picked it up before, it’s only now that I work in this area that I’ve realised how much there is.

V20

The negative community attitudes towards mental illness were believed to be influenced by a lack of understanding of the impact of mental illness on an individual’s life/self-identity or the symptomology/prognosis for those with a mental illness. As one service user stated: ‘[They don’t understand] the actual problems that people get and how horrible it can be . . . They don’t know how to identify it as well (SU7, Asian British Pakistani female).

Accessibility

On the whole, service users and carers were positive about the early intervention service. Although the majority of service users accessed mental health care after a crisis, once they were in receipt of the service it was generally viewed as appropriate, accessible and accomodating in terms of service users’ needs:

No flaw, no disappointment, even in the night when we call, they were always there.

C1, Asian British Pakistani female

He said don’t worry we’ll look after your daughter, don’t worry and he explained everything, he said don’t worry about the lift or anything we’ll provide the transport and come to see her in the house. If you’ve got no transport someone will come here to pick her up and take her to our office and we think this is the best thing.

C2, Asian British Pakistani male

Early intervention professionals were considered to be understanding, respectful and accomodating: ‘They are very friendly, as soon as they walk in the house it’s like they adapt to the environment in the sense that this is an Asian/Muslim family so we have got to be open to suggestions’ (SU22, Asian British Pakistani male).

None of the focus group participants felt that early intervention services had to change to meet BME needs; instead, the issues raised were seen as generic to mental health care.

User choice

The majority of service users were not given a choice in terms of the gender or ethnic background of the professionals who they came in to regular contact with (e.g care co-ordinators). However, for most service users this was not a problem provided that professionals were competent in their job and treated them with respect. All service users were unanimous that early intervention services should consider language needs and provide interpreters when needed.

Continuity/discontinuity of care

One of the key negative aspects of the early intervention service was the high levels of staff turnover. Service users and carers formed strong relationships with early intervention service staff (particularly care co-ordinators) and became anxious when there were staff changes: ‘my son is already worrying. It’s worrying because he’s saying when [care co-ordinator] gone because to him [care co-ordinator] everything right now’ (C12, black British Caribbean female).

Continuity of care was important; in particular; having the same care co-ordinator was vital, as long as the service user had a good relationship with him or her.

High turnover of staff meant that service users had to repeat details of events. Repeating details of the negative events that had occurred leading up to developing mental illness to different professionals was often described as ‘traumatic’ and was considered to have a detrimental effect on the well-being of the service user: ‘For me it was a negative thing because I wasn’t confident enough to disclose to someone who is new so I had to withdraw a bit’ (SU5, black British African female).

Early intervention service staff roles and responsibilities

Service users and carers talked about their relationships with early intervention service staff, particularly their care co-ordinators. For some, there appeared to be confusion over the role of care co-ordinators. A few service users described care co-ordiantors as ‘friends’ – ‘We get on like friends. I’d see her as a friend really’ (SU7, Asian British Pakistani female) – whereas others were suspicious of care co-ordinators’ motives and suggested that this was all part of a method employed by professionals to create a rapport and obtain information – ‘To get you to trust them basically so they try and become your friend . . . I don’t see them as that no. Not really, their working people that are doing their job’ (SU10, black British Caribbean female).

Most service users discussed their care plans with care co-ordinators and the services that would be provided to them and considered early intervention staff to be accessible and accommodating:

They called at my house . . . they called me before coming, the booked appointment to ask if I would be available at home or college so then.

SU3, Asian British Pakistani female

Yeah I was given [option], they would ask me how often do you want us to visit you or if you don’t want us to come to your house, how often do you want to come to early intervention.

SU5, black British African female

However, there were a few cases in which service users believed that this was not the case: ‘Excuse me, they never gave me a plan like which dates they want to come’ (SU6, black British African male).

A minority of carers were also frustrated with the care co-ordinators. One carer believed that he had no support from the early intervention service. He did not find the carer support group useful as no action was taken about concerns he raised with regards to his son’s welfare and ‘life circumstances’:

Sometimes I phone up and I leave messages and they don’t get back to me . . . Once I have phoned him and he turned the phone off so I told [service user] to tell him that he should speak to me and I want to see him, he don’t come.

C4, black British Caribbean male

A positive aspect of early intervention was that the service was accommodating and considerate of the service users’ individual and cultural needs. For instance, the doctor could visit service users at home or they could go to an alternative clinic in a different area and early intervention would provide them with transport to get there. This was also reiterated by voluntary and community organisation representatives:

In the community where, the stigma, basically, attached to the mental health issues and it, you know, they provide a service where they pick up people from home and drop them off at home. But a lot of their clients won’t like to be dropped off or picked up from home, you have to drop them off round the corner or something.

V20

However, professionals also recognised that, although attempts were being made to work more holistically, case load, time and financial constraints meant that it was diffciult to provide a bespoke person-centred approach that considered all cultural needs.

Withholding information

In general, when service users were continuing to seek support from traditional healers (i.e. faith/spiritual) they did not disclose this to early intervention professionals. They believed that professionals (i.e. care co-ordinators and doctors) would not understand their views/perceptions of health and well-being, or the use of traditional remedies for the treatment of distress or illness, including psychological and emotional difficulties, within a spiritual framework:

Just that . . . we can’t blame them because they’re upbringing is like Westernised, they can’t understand if we talk about jinn’s.

SU20, Asian British Pakistani male

Something that me and my family talk about.

SU7, Asian British Pakistani female

Similarly, spiritual care representatives stated that they received only ‘occasional referrals’ from early intervention services and that service users were reluctant to disclose their faith and the associated religious practices and beliefs because of a fear that this would be misconstrued by professionals as being part of their mental illness. The general consensus was that service users’ spiritual/religious and cultural beliefs needed to be considered when building a care plan and providing person-centred care:

When you hear somebody saying, ‘that they want to be washed in the blood of Jesus’. That’s enough to make a lot of psychiatrists really quite nervous. But, from a particular faith, and, particularly a cultural expression of faith, that would be something that you would hear week in, week out, in a perfectly ordinary service of worship. There’s nothing unusual about that phrase. And it certainly falls well within the norm, of what might be practised by those, who are not mentally unwell.

SC8

Cultural appropriateness

The majority of professionals recognised that great variation exists between and within cultures held by service users in terms of explanations of mental illness and preferred treatment options. It was acknowldeged that these needed to be considered in the care plan approach taken. Professionals appeared respectful and considerate of what might be deemed culturally appropriate behaviour, including perceived traditional gender roles amongst certain BME groups. One professional discussed the complexities of working with diverse ethnic groups and conflicting and changing gender roles and life paths, which meant that she had to develop treatment plans that remained respectful of families’/carers’ wishes and benefited the service users:

I think sometimes, a big focus on thinking that everyone’s got to be in jobs or in training, that can be equally inappropriate for some of the girls [from Asian backgrounds] or lead to conflict where you could be getting in a real battle where we might have some of our girls who actually want to live a more Westernized life, and there’s already that conflict in the family and I think you’ve got to be careful not to sort of, side too much so you’re actually causing a lot of tension within the family, because that has happened where, for instance we wanted to take somebody out to build up their confidence, and then the family members have been a bit worried about where are you going to take this person, is it going to be mixed day centre for instance or going to somewhere like a respite unit, that needs careful handling as well.

P6

A major concern expressed by professionals and voluntary and community organisation representatives was the availability of appropriate interpreters. Professionals stressed that the quality, reliability and competence of interpreters were questionable:

I’m not sure what level or degree of training these people have in mental health . . . the service user was very angry and conveyed that he really wanted to belt this guy because he was so objectionable, to what the client was expressing, which really undoes a lot of the work that we do with engagement.

P2

Other professionals talked about their experiences of interpreters overstepping professional boundaries and behaving inappropriatley:

I’ve been out with an interpreter once, and one of the things that we were trying, we were trying to basically persuade this young person to take medication, and he said, ‘Well let me persuade it’ and then the whole boundaries of that interpreting role, which was competently inappropriate, and it was just quite, well really unprofessional.

P6

There were concerns that interpreters might breach confidentiality if they were from the same close-knit BME community, you don’t always take it on board that people know of people, who know people.

P3

In relation to the point raised by professionals around social stigma (see Social stigma and shame), professionals recognised that, although some information around individuals’ beliefs and values was collated through the health and social care assessment, ‘this was underutiliesed’ (P5, P6), the main reason being workload and time constraints.

Treatment, support and recovery

All carers were positive about the treatment provided by early intervention services, particularly in terms of the positive affect of medication:

[Name] has got a lot better in himself in that way I think the injection and the support he has been getting.

C5, white British female

I find it helpful like they give you medication to calm him down and counselling.

C11, black British Caribbean male

However, the majority of service users were unhappy with their medication: ‘I’ve told them that I want to come off this [medication] . . . I don’t think it’s really helping me anymore’ (SU4, black British Caribbean male).

The main frustration for service users was that medication/treatment did not provide a cure, hence the service was only seen as partially effective: ‘the medication is good and everything but it’s not taking away the illness . . . I want the cure you know, we want the cure you know’ (SU6, black British African male). As a result, some service users sought advice about alternative treatments from other service users: ‘I’m just waiting until I come off those and then I will ask them about the next medication . . . I . . . was told . . . by someone else they just said it might help me . . . one of the other service users’ (SU4, black British Caribbean male).

Professionals acknowledged that the internet had made information accessible and service users were knowledgable about treatment options as well as about the ingredients in certain medications. This meant that service users whose religious practice and beliefs forbade the consumption of pork or pork products refused to take medication that contained such ingredients: ‘some of the medication they do have pork fat for example in them and they [service users] are very cautious about taking this sort of medication’ (P6). Professionals acknowledged this but also stated that they were unaware of the alternative treatments/medication available.

The majority of service users did not see the potential benefits of talking therapies (i.e. counselling, psychotherapy); again, this was because they could not see the immediate benefits. Some voluntary and community representatives urged the need for efforts to educate service users about the benefits of such therapies and the need to make these culturally appropriate: ‘whenever I refer so many clients to the, for the counselling services, they said, ‘I didn’t find it quite useful’, and we are encouraging them to understand, what is counselling about’ (V16).

Examples of what were deemed to be appropriate talking therapies were given, for instance, one voluntary and community representative mentioned the Lateef Project, a Muslim telephone counselling service. However, the majority of voluntary and community organisation representatives stressed that services geared towards BME service users needed to consider the individual needs of the service user not just his or her assumed preferences based on his or her religious identity:

But I have a client who go into anxiety, right, she even, though she don’t pick the phone at home, once the phone rings, she get panic, she don’t want to, right, and she always have that kind of fear, ‘somebody’s listening my conversation’.

V16

In terms of culturally appropriate treatment or the care plan approach taken with BME service users the majority of professionals stated that they learned through experience as opposed to any official training:

I’ve never had a day of dedicated cultural awareness [training, other than the 1-day trust cultural and diversity training] . . . so I’ve learned through blunders I’ve made. Through asking families, from colleagues. I suppose the first thing I would do like for instance the first time I work with a family, from a Pakistani Muslim family, was talk to a colleague from that culture and say, come on, give us a clue, or what shouldn’t I say for a start.

P6

Professionals highlighted that, although the service had made attempts to set up carer support groups and these were open to all carers, only black female carers (namely mums) were accessing them. The process of encouraging Asian carers to access such groups was viewed as ‘difficult’ and ‘culturally insensitive’ because of the social stigma of having the label of mental illness:

We try to get something in our team going for some of the mums and this was with a lot of the Pakistani and Bengali community but the point is, in a culture where mental illness is so taboo, the idea of getting people to talk about it, in itself isn’t really culturally sensitive. Because there are some groups aren’t there for that client group, I know one of the CMHTs runs a group for carers but they call it a sewing group, and it’s not a sewing group it’s a support group, but that’s what they do, to enable people to get that support without the stigma.

P6

Some service users and carers also stressed that the early intervention service played a pivotal role in providing a support system for service users post recovery, that is, support in terms of developing life skills and reintegration into the community. For these individuals, the early intervention service was considered to be key in providing the support needed for service users to maintain esstential life skills such as independence and vocational attainment: ‘He is doing voluntary work now; he’s living in his own flat now’ (C14, black British Caribbean female).

Creating a new self

Coming to terms with mental illness was a difficult process for all service users. It challenged the way that they felt about themselves and how they related to others. This was reiterated by spiritual care representatives who suggest that:

They [service users] internalise that shame, yeah, so they actually, they can’t, I mean, they can’t accept being given a diagnosis because that seems to be the worse thing possible, that, you know, the most awful thing that could possibly happen to them is that they could be told they’re mentally ill.

SC7

In an attempt to maintain a positive sense of self, in most cases there was a period of conscious and/or unconscious denial of reality and resistance to accepting illness. As one spiritual care representative stated: ‘But this [is] denial . . . I, witness it every day . . . people say, “Oh I’m not sick, these tablet make me sick”‘ (SC6).

Some service users did not accept that they were unwell and began normalising symptoms and developing coping strategies/explanations to maintain a sense of normality: ‘Yeah I just thought you know what I am who I am and I think I control my own destiny and then God probably gave me this’ (SU20, Asian British Pakistani male). This was often followed by anger and grief: ‘But I don’t want them [voices] to be there because I was never like this. I can’t live hearing some people talking’ (SU5, black British African female).

Returning to a state of psychosocial well-being was a difficult process. Becoming well often resulted in the ‘rejection of the old self’ and ‘acceptance of the new self’ in terms of exercising personal agency by abstaining from behaviours and practices such as drinking, smoking cannabis and spending time with friends who were involved in such activities. Early intervention service staff were considered to play a useful role in aiding the creation of new social networks, through activities and events arranged for service users.

Educate and raise awareness

The majority of service users and carers stressed the need for early intervention services to educate carers and raise awareness about mental Illness in terms of causes, symptoms and affects. Service users belived that more work needed to be undertaken to educate BME communities across generations:

Maybe educating Asian people again about mental health problems because a lot of them don’t understand it, even like the young generation people. I’ve got some Asian friends and they don’t really understand it so I never bothered telling them.

SU7, Asian British Pakistani female

There was a consensus amongst voluntary and community representatives that BME service users were more likely to seek spiritual/religious and/or cultural explanations of symptoms as opposed to medical explantaions because of a lack of knowledge and understanding. As a result, the majoirty of voluntary and community represntatives and a minority of spiritual care representatives suggested that faith healers such as imams also needed to develop knowledge about the symptoms of mental illness and the services available so that they could recognise and signpost individuals appropriately:

Well, I think this is where it’s important that the health-care professionals and the psychiatrists or consultants and the nurses, work with the Imams and try and understand Islamic perspective on mental health. Or if the Imam does not have enough knowledge, that they train the Imam . . . these are the things that one needs to look at, right, which would differentiate from, someone, suddenly going into this transit of speaking in tongues [or becoming mentally unwell].

SC1

The information currently available regarding early intervention services and mental health services in general was not accessible for all. Carers suggested that any information should be printed in an accessible lay format ensuring that language barriers and individuals’ levels of understanding are considered: ‘You know, for the Jamaican community and the Asian people, I don’t think there is enough information, but it’s not just information it’s the understanding of English’ (C5, white British female).

Collaborative working with voluntary and community organisations

Commissioners stated that voluntary and community organisations were ‘key partners’ in terms of engaging with communities. Community development workers were also highlighted as playing a key role in bridging the gap between the local BME communities and services by raising awareness of the mental health services that are available.

However, professionals were not liaising with community development workers and had little knowledge of the voluntary or community sector organisations available in the local areas (see Treatment, support and recovery). They also lacked the capacity and time to explore such options; instead, they stated that an up-to-date directory with details of such services needed to be made available:

Yes, everything is a secret in Birmingham . . . you’ve got to learn, you’ve got to find this person, then word of mouth and then you meet people they’re really knowledgeable and helpful and you cling onto them, don’t you? Because you know they’re going to help you with lots of stuff. But there’s no obvious way of finding stuff.

P6

Time constraints and large caseloads meant that there was little opportunity for professionals to network with voluntary and community organisation representatives.

Lack of funding and resources

Although the importance of voluntary and community organisations was acknowledged, commissioners felt that the funding for such services was limited:

We fund to do a bit of counselling to BME communities and then there’s others that might be funded say through the NHS or the City Council to provide broader services, to do with well-being. And then there’s others that we wouldn’t fund, but nevertheless are key for us, because as you said, people who are working directly with the local communities.

COM8

The majority of voluntary and community representatives were frustrated and anxious about changes in the health service. A key point of frustration was the lack of local culturally appropriate respite provision:

The Commissioner was giving the funding, they were, they purchased the service and we were the provider, but still I’ve noticed that they never, ever come and visit the service, and my concern was, how they were monitoring the service? . . . without seeing the Project, they just cross out.

V16

The majority of voluntary and community organisation representatives also stated that their role in service provision, health promotion and dissemination of information needed to be recognised and valued by statutory services. Suggestions were made about how to reduce barriers to and delays in help-seeking, such as provision of services within GP practices, and early intervention services commissioning voluntary and community services:

It will be a really good idea for GP to purchase those services and those voluntary organisations work alongside with the GP, so it will be less work for the GP . . . if, early intervention can purchase the service, direct from us we can provide the service.

V16

The consensus was that more funding needed to be made available from the Department of Health to sustain voluntary and community organisations.

Background and Aims:

While it is well established that BME users have adverse pathways to care; it is less clear what socio-cultural and ethnic influences determine these pathways. Institutional racism, often cited as a cause, does not explain why pathways are adverse even in FEP, since these users have no prior experience of mental health care. Explanations are likely to lie in wider social and family influences which impact upon help-seeking, illness recognition and symptom attribution. There is evidence that some BME communities, especially those from Afro-Caribbean background, stigmatise mental illness more heavily, attribute unusual behaviour to the individual rather than to an illness [40, 41] and seek police rather than medical help when dealing with an ill relative [19].

This mixed methods study will use both quantitative and qualitative approaches to assess ethnic variations in help-seeking in FEP. The specific research questions will be:

1. Are there ethnic differences in the recognition of early signs of psychosis and help-seeking behaviours?

2. Are such differences a function of cultural factors such as explanatory models of illness or are these more closely related to socio-economic status, deprivation and isolation?

3. Do biological as opposed to psychological or social explanatory models of illness predict early medical help-seeking and shorter duration of untreated psychosis (DUP)?

Methodology:

Study design: A cohort of FEP patients and their families (one key carer per patient) presenting to EI services will be interviewed individually to determine how the early changes of psychosis are understood and attributed by the patient and the family, what help-seeking processes are initiated, by whom, and with what outcomes. We will specifically explore the issues of stigma, mistrust or suspicion of services and treatment and perceptions of discrimination and prejudice from services.

Sample: A cohort of up to 120 (estimated) FEP patients and their families (one key carer per patient [Total n = 120 estimated]) presenting to EI services will be interviewed individually. In these interviews, along with routine structured assessments described above, data will also be collected on five additional measures (listed below) in order to fufill the study objectives.

A purposive sample of FEP patients (n = 30) and their families (one key carer per patient) will also be drawn from this cohort of patients (and their carers) to participate in in-depth individual interviews. We will ensure that participants include a range of socio-demographic backgrounds including age, gender, ethnicity and economic indices.

Data collection: Interviews will be held at the interviewees’ home or a neutral setting if this is preferred. It is anticipated that the interviews will take approximately 60–120 minutes each with patients and carers. Carers will be interviewed separately unless requested otherwise.

Along with routine structured assessments described above, data will also be collected on:

1. Nottingham Onset Schedule [28]: This semi-structured interview identifies the emerging signs and symptoms of early psychosis and acts as a template upon which help-seeking endeavours of the patient and carers are mapped in a reliable manner. A Psychosis Causal Beliefs Coding System (PCBCS) (developed from the SEMI [37] and Helman 1994 [42]) will be included as part of NOS in order to develop an understanding of patients and carers attributions to symptoms and help-seeking.

2. Inventory of Attitudes towards Seeking Mental Health Services (IASMHS) [43]: This is a self-report questionnaire that aims to develop an understanding of patients’ attitudes towards help-seeking from Mental Health Services.

3. Beliefs About Causes of Mental Illness (BACMI) [44]: This is a cross-cultural questionnaire devised to understand beliefs about mental illness within the Chinese and the British context. This questionnaire has been amended (with due permission) to fit the context in Birmingham.

4. Beliefs About Treatment of Mental Illness (BATMI) [44]: This cross-cultural questionnaire elicits patients and their carers beliefs about the treatment of mental illness.

5. The Stigma Scale [45]: This is a standardised measure devised on the basis of service users experiences and views of stigma to mental illness.

6. ITAQ (The insight scale) [35]: This scale assesses insight into dimensions of recognition of need for recognition and treatment of illness.

Analysis:

With permission from the participants, each interview will be transcribed verbatim and analysed using Krueger’s framework and Rabiee’s guidelines [30]. Quantitative data from NOS will be explored to determine the relationship between socio-demographic and clinical variables and service utilisation. Attributions collected as part of the NOS will coded using Leeds Attribution Coding Schedule (LACS) [46]. The beliefs and attitudes questionnaires are standardised measures which allow us to quantify attitudes and beliefs towards mental health services. The Research Team has been provided adequate training to carry out the same. A triangulation of data generated from different methods mentioned above will allow an in-depth understanding of the dynamic social, cultural and interpersonal processes that affect help-seeking and the interplay between these processes and local healthcare system. We shall specifically explore whether a bio-medical attribution of causation for early signs of psychosis predicts help-seeking through medical agencies, shorter DUP and less adverse pathways to care as opposed to a social explanatory model.

Outcomes:

The study outcome will include an understanding of the socio-cultural determinants of recognition of illness and help-seeking behaviour in FEP, including intra-ethnic differences. We will identify ‘malleable’ variables in care pathways that lend themselves to service-level interventions and ensure improved access to care. We will also develop family and community psycho-education strategies and intervention to reduce the stigma of mental illness, improve community understanding of the identification, causes and treatment of psychosis, and minimise barriers to help-seeking in early psychosis.

Background and Aims:

The true denominator population for determining predictors of detention (including BME status) is the population which is assessed under the MHA, not the subgroup which is detained, since studying the latter does not allow exploration of differences in the availability of community alternatives to avoid detention [3]. Yet there is no study in psychiatric literature on patients assessed under the MHA. This study will prospectively evaluate the outcomes of all MHA assessments over one year. A sub-sample of assessments will undergo in-depth evaluation by researchers who will interview users, carers and clinicians to identify the determinants of the detention, including ethnic differences in the availability of community alternatives to inpatient admission.

The specific research questions will be:

1. Are there ethnic differences in the proportions of patients undergoing MHA assessments in a given year?

2. What are the clinical, sociodemographic, ethnic and risk-related predictors of detention as an outcome of MHA assessments?

3. Do ethnic groups differ in the availability of community alternatives (statutory and voluntary) which could reduce need for in-patient detention?

Methodology:

Study design: A prospective study of all MHA assessments conducted in one year using social services and MHA office records. In-depth evaluation of a subsample of MHA assessments to determine clinical, sociodemographic and ethnic predictors of detention as an outcome of assessment.

Study sample: About 150 patients are detained under the MHA each year in BSMHFT. The rate of assessment is likely to be 1.5 to 2 times the detained population. About 250–300 MHA assessments will therefore form the study sample. We will purposely select a subsample of these assessments for in-depth qualitative assessments of the process of detention and the determinants of the final decision, including both detained patients and those in whom detention was not the final outcome.

Study method: All psychiatric and social work services in the study area will be contacted with a letter explaining the purpose of the study and asking them to record data on all MHA assessments they conduct, regardless of whether the assessment resulted in detention or not. A data collection tool will be developed specifically for the study to include data on diagnosis, ethnicity, objective and subjective measures of risk, level of social support, outcome of assessment and the availability and use of community alternatives to detention. A researcher will ring all clinical teams once a week and ask the team manager about any MHA assessments conducted in the previous week. For all assessments thus identified, the MHA tool will be sent to the psychiatrist and social worker involved, and responses sought with periodic reminders.

A subsample of MHA assessments, ensuring wide socioeconomic, geographic and ethnic representation, and including both detained and not-detained patients, will be evaluated in depth by researchers who will interview the psychiatrist (n = 20) and social worker (n = 20) involved in the assessment and a carer (n = 20) of the service user. We will therefore have 20 case studies with a total of 60 interviews. Carers interviews will explore themes of stigma, shame, mistrust and fear of services and treatment modalities, perceptions of discrimination, and the availability and acceptability of alternatives to traditional in-patient care which could have avoided detention. Interviews with psychiatrists and social workers will explore the clinical determinants of their reason to detain the patient, including perceived level of risk, local provision of alternatives to in-patient care and risk-aversion due to concerns about adverse events were the patient not to be detained.

Data Analysis:

For all MHA assessments, ethnic differences in assessment and detention rates will be explored and correlated with sociodemographic and clinical characteristics of the sample. These will be proportions and percentages for categorical data; means and standard deviations for continuous data when parametric assumptions are met; and medians and interquartile ranges for other continuous data and for ordinal variables. Logistic regression will be conducted to determine predictors of detention with age, gender, diagnosis, risk, social support and ethnicity as independent variables to establish the independent effect of ethnicity on detention when other risk factors are taken into account.

Qualitative data: All interviews will be audio taped with permission and fully transcribed. Field notes will be made immediately after each interview to complement data collection. We expect that data saturation will be reached in these 60 interviews. Two experienced researchers will each read the transcripts and field notes and construct a preliminary thematic coding framework. Disagreements during this process will be discussed until a consensus is achieved. Deviant cases will be actively sought throughout the analysis and emerging ideas and themes modified in response. Nvivo (QRS release 2.0) will be used to manage data more effectively and transparently with data organised into initial and then higher codes that provide insight into identified themes.

Outcomes:

The primary study outcome will be the socio-cultural and ethnic determinants of MHA assessment outcomes, especially ethnic differences in the availability and acceptability of alternatives to inpatient admission. Secondary outcomes will include ethnic variations in rates of MHA assessments and clinical risk factors that influence coercion. Qualitative analysis will yield information on how encounters between healthcare providers and service users and carers, who often hold conflicting explanatory systems about health and illness, can be negotiated to avoid coercion. We will develop conceptual models and good practice guidelines that bring together very different views of reality: a biomedical versus a biographical approach to the events that lead to the MHA detentions.

Background and Aims:

The NHS Policy Implementation Guide [7] recommended the development of 50 Early Intervention in Psychosis (EI) services in the UK by April 2004, each catering for about 1 million populations each. A detailed plan outlines the structure, function and focus of these services. However, such ‘one size fits all’ model may not take into account differences in local population needs and preferences [47]. In particular it is not clear whether such generic services meet the specific demands and challenges of providing care for BME patients.

This study will explore the appropriateness, accessibility and acceptability of generic EI services for different ethnic groups within Birmingham to better understand care needs and preferences of service users and clinicians. We will also develop ethnically-appropriate outcome measures that can be used both in EI services and more broadly within mental health services.

Methodology:

Study design: Focus groups of service users, carers, health professionals and key stakeholders from voluntary sector and community groups will be conducted at several sites ensuring wide ethnic representation and moderated by members of the research team. Focus group topic guides will be developed from in-depth interviews with service users, carers, professionals, community organisations and a literature review. We will address themes of trust, alliance, ethnic sensitivity, cultural barriers to help-seeking, perception of unmet need and alternative provisions to improve BME users engagement and experience of services.

Sample: Participants will be drawn from the database of service users and the preliminary mapping exercise. User and carer groups will be homogenous in that professionals will be excluded, to allow users to express themselves freely in the absence of service providers. Special consideration will be given in the composition of the groups to issues of language and stigma, whereby users/carers may not wish to be with others from their own community. Since our priority is to promote creativity and the emergence of innovative ideas in service development, all other groups will be of mixed composition. A maximum number of 10 participants will be recruited for each focus group to allow generating a variety of perspectives. The focus groups will be convened as follows:

1. Six service user groups, two to be held at each geographical location in BSMHFT (HOB, South and North-East EI services). These will include people from a variety of ethnic backgrounds and perspectives on explanatory models, treatment and service provision in early psychosis.

2. Three carer groups, one from each site (as above). Purposive selection will be used to ensure a variety of sociodemographic and ethnic characteristics and experiences.

3. Three service provider groups, consisting of primary and secondary care providers and commissioners, mental health clinicians and members of NGO/voluntary sector.

The topic for each of these focus groups will be ‘How appropriate and accessible are generic EIS services for the specific ethnic and cultural needs of BME communities in Birmingham? How can these be improved?’ Cultural appropriateness and accessibility of services will be explored within several domains including user choice; importance, assessment and perceived respect for cultural needs; availability of interpreters and information leaflets in different languages; ethnic mix of the treating teams and services; and local provision of culturally appropriate ‘talking therapies’. Users and carers will be specifically asked about their perception of the relevance and importance of cultural and ethnic factors in the care received from EI services. For service improvement, preliminary findings from study 1 and 2 on pathways into care and coercive treatment will be briefly presented as a basis for a discussion. The discussion will focus on ethnic differences and determinants of pathways into care, predictors of detention, and ideas for innovative community alternatives to traditional in-patient care. The focus groups will be of approximately one and a half hours’ duration.

Analysis and outcomes:

Each interview will be transcribed verbatim and if, permitted by participants, audio-taped. Data will be analysed using Krueger’s framework and Rabiee’s guidelines [30] to identify themes that will inform about appropriateness and acceptability of EI services for different ethnic groups. We will develop ethnically appropriate and culturally-sensitive outcome measures for performance managing mental health services and ensuring that DRE expectations are met. We will produce guidelines on why and how EI services should be modified for the needs of the BME communities.