“Hear me out”: An evaluation of BME Service Users’ experiences of barriers when accessing and engaging with the Leeds Psychology & Psychotherapy

Service By Diane Agoro & Romana Farooq (Clinical Psychologists in Training)

Commissioned by Lal Ahir

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Table of Contents Aims ................................................................................................. 4

Introduction .................................................................................... 4 Description of the service ................................................................................................... 4 Literature review................................................................................................................. 5

Method ............................................................................................ 8 Aims ................................................................................................................................... 8 Phase One ........................................................................................................................... 8 Phase Two ........................................................................................................................ 10

Results ........................................................................................... 11 Phase One ......................................................................................................................... 11 Phase Two ........................................................................................................................ 19

Discussion ...................................................................................... 23 What are some of the barriers to accessing the service and are there ways in which the service could improve? ..................................................................................................... 23 What are some of the experiences of service users engaging in psychological therapy? 24 Limitations ........................................................................................................................ 26 Recommendations ............................................................................................................ 28 Future research ................................................................................................................. 29

Conclusion .................................................................................... 29

References ..................................................................................... 31

Appendices .................................................................................... 37 Appendix 1: Service Evaluation Questionnaire ............................................................... 37 Appendix 2: R&D Approval............................................................................................. 39 Appendix 3: Cover Letter ................................................................................................. 41 Appendix 4: Information Sheet ........................................................................................ 42 Appendix 5: Reminder Letter ........................................................................................... 44 Appendix 6: Thematic Analysis Guidelines ..................................................................... 45 Appendix 7: Interview schedule ....................................................................................... 46 Appendix 8: Referral classification, self-reports versus service database ........................ 47

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Abbreviations

BME: Black and Minority Ethnic

BPS British Psychological Society

CMHT Community Mental Health Team

CQC Care Quality Commission

DoH: Department of Health

LPPS Leeds Psychology & Psychotherapy Service

LYPFT: Leeds and York Partnership Foundation Trust

NHS National Health Service

NPSA National Patient Safety Agency

PTSD Post-Traumatic Stress Disorder

R&D: Research and Development

SEP: Service Evaluation Project

SURG: Service User Reference Group

SU Service User

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Aims The Service Evaluation Project (SEP) was commissioned by Lal Ahir, a psychotherapist at Southfield House, an adult psychological therapies service which is part of the Psychology and Psychotherapy Service for Leeds and York Partnership NHS Foundation Trust. Annually the service receives approximately 1400 referrals, 10% of these referrals are from Black and Minority Ethnic (BME) groups. The commissioner was interested in gathering data about the experiences and views of service users of BME heritage. The SEP aimed to ask two questions:

1) What are the barriers that BME service users experience when accessing the service and are there ways in which the service can facilitate access?

2) What are the experiences of BME groups engaging in therapy and what can the service do to improve this?

Introduction Description of the service The Leeds Psychology and Psychotherapy service is a Step 4 secondary care service which offers a range of specialist psychological approaches and therapy for adults in Leeds. The service operates from seven different sites across Leeds: Blenheim Terrace, Southfield House, Lea House, Aire Court, St Mary’s House, The Mount and St Mary’s Hospital. Referrals to the service are made by GPs, care coordinators, psychiatrists and primary care mental health workers. Service users are seen by a range of professionals including clinical psychologists, counsellors and psychotherapists and the service offers a range of therapies including Cognitive Behaviour Therapy (CBT), Cognitive Analytic Therapy (CAT), Psychodynamic psychotherapy, group psychotherapy and Family therapy. As a teaching Trust, they also provide a range of training placements to different professions. The Trust has recently undergone a period of transformation which has resulted in a number of changes, such as the merger with services in York and the development of ageless services. As a result there have been a number of consequences following the “restructure” such as changes in referral rates and demographics of service users accessing the service. In response to this the service felt a need to better understand the journey of BME service users through the service, particularly in relation to some of the blocks and barriers that they may experience in the process. This was also linked in with the DoH Initiative “Delivering Race Equality in Mental Health Care” in England and Wales, which made several recommendation on how services could improve to tackle racial inequality (DoH, 2005). In 2011 the Trust published “A service review and strategic plan for improving access to psychological therapy for people from BME communities” highlighting a need to investigate why a large proportion of BME clients “do not make it to therapy” (LPPS, 2011, p. 2). It was noted that although referral rates reflect the proportion of BME residents in Leeds, attention needs to be paid to the reasons and context surrounding why some service users may or may not respond to an opt-in letter for an assessment and why some

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service users may drop out of therapy. From this review it was suggested that BME service users should be approached to elicit their views about the service and to determine whether there are any factors and/or barriers which may have affected their access and engagement with the service. Literature review The mental health of BME Service Users Britain is a multicultural society, in the UK ethnic minorities account for 14% of the population and this has been increasing over the years (ONS, 2012). Black and Minority Ethnic is a term often used to describe and group together cultural and ethnic minorities in the United Kingdom. Although this is done in an attempt to represent minority groups, the term can also mask the variation of all the individuals it represents (Richardson & Fulton, 2010). As the UK becomes more ethnically diverse, questions around their health and wellbeing are also increasingly pertinent. There is growing evidence to suggest that ethnic minorities are suffering from increasing mental health problems (Sproston & Nazroo, 2002), particularly depression (Farooq, 2012), anxiety (Anand & Cochrane, 2005), psychosis (Rathod, Kingdon, Phiri, & Gobbi, 2010), self-harm (Husain, Waheed, & Husain, 2006) and PTSD (Bryant-Davis & Ocampo, 2005). In terms of suicide, some studies have reported higher rates in South Asian women, sometimes more than double the national rate (Burr, 2002). As a result reducing rates of mental illness and suicide in BME communities is a key national target (DoH, 2003, 2005). However services and practitioners are increasingly recognising some of the barriers to reducing rates of mental illness such as unequal access to healthcare (K. Bhui, Stansfeld, Hull, Priebe, Mole, & Feder, 2003). Ethnic Inequality & Health Services The concept of inequality underlies most definitions of social exclusion which is defined as a:

“complex and multi-dimensional process. It involves the lack or denial of resources, rights, goods, and services, and the inability to participate in the normal relationships and activities, available to the majority of people in a society, whether in economic, social, cultural or political arenas” (Levitas, Pantazis, Fahmy, Gordon, Lloyd, & Patsios, 2007, p. 9).

As a result any form of inequality can have profound effects on the quality of life of people who are affected (Kabeer, 2000). The concept applies to people experiencing poverty, unemployment, mental health problems, restricted access to services, discrimination and limited social participation (Levitas, Pantazis, Fahmy, Gordon, Lloyd, & Patsios, 2007). BME service users are presumed to be socially disadvantaged, by virtue of being economically disadvantaged, vulnerable, poor and a member of a disenfranchised racial, ethnic or religious group (Braveman & Gruskin, 2003). Ethnic inequality is therefore the restriction or denial of resources and services to individuals from a particular ethnic group. Tackling ethnic and racial inequality were key policy targets of the Labour Government (DoH, 2005).

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For decades racial and ethnic disparities and inequalities in mental health services have been the focus of concern, debate and much research (K. Bhui & Bhugra, 2002; DoH, 2003). This concern and interest was particularly driven by reports on racial and cultural issues in the provision of services (Fernando, 2002, 2003), dissatisfaction with services reported by BME service users (Keating, Robertson, McCulloch, & Francis, 2002; Parkman, Davies, Leese, Phelan, & Thornicroft, 1997) and reports into deaths of BME service users in psychiatric hospitals (Salah, Sashidharan, Stone, Struthers, & Blofeld, 2003). Therefore in 2003 the then Health Minister Jacqui Smith launched a number of initiatives as an important step forward to support the reform of mental health services for BME communities in the UK (DoH, 2003). This came about following increasing evidence and testimony from BME service users, carers and the community that their needs were not being met by services (DoH, 1999, 2003). The evidence suggests that BME communities face a variety of disadvantages when they access or try to access statutory mental health services in the NHS. The results of the Count Me In Census over 5 years consistently highlighted that BME service users were three to four times more likely to enter the mental health system through detention under the Mental Health Act (CQC, 2011). Following this the CQC emphasised that early intervention is vital in order to reduce the number of BME service users admitted into hospital. Wilson, Ramsden and Clark (2009) also highlighted the need for better systems-wide understanding and a review of whole pathways of care to fully understand the experience of BME service users rather than just focussing on admission rates. Issues around access to psychological therapy There has been an increasing amount of research on BME groups and their experiences of accessing and using healthcare services (Fernando, 2005). In all aspects of mental health care, BME service users have a poorer experience and outcome than the majority white population (DoH, 2003). For a very long time there has been evidence to suggest that BME service users have been underserved in primary mental health services and are much less likely than other groups to be referred to psychological therapies (DoH, 2003; Mind, 2013, Farshi, Bergin, Whinn & Whitworth, 2009). A number of barriers have been identified in the literature that contribute to unequal access to psychological therapy such as poverty (Michelson & Day, 2014), language problems (Bhugra & Hicks, 2004), stigma and shame (Weatherhead & Daiches, 2010; Jassi, 2008), fear of stereotyping (Chew-Graham, Bashir, Chantler, Burman, & Batsleer, 2002), lack of trust and confidence in services (Nickerson, Helms, & Terrell, 1994; DoH, 1999; Thompson, Bazille & Akbar, 2004; Keating & Robertson, 2004), lack of knowledge (Loewenthal, Mohamed, Mukhopadhyay, Ganesh, & Thomas, 2012), lack of culturally sensitive services (Kamaldeep Bhui & Morgan, 2007), beliefs about accessing mental health services (Sullivan, Harris, Collado & Chen, 2006) and the tendency to seek help from other sources, for example, faith healers (Rathod, Kingdon, Phiri & Gobbi, 2010). In addition, many BME service users tend to access mental services whilst their health is at

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the crisis stage rather than earlier on when less intrusive and coercive interventions are used (RAWOrg, 2011). Issues around engaging in psychological therapy BME service users are more likely to drop out of therapy (Arnow et al. 2007; Wierzbicki & Pekarik, 1993) have poorer outcomes (Cochrane & Sashidharan, 1996) and a lower working alliance than the majority white population (Walling, Suvak, Howard, Casey & Murphy, 2012). DoH (2003) outlined three main reasons why BME groups experience problems in mental health care. First there is an over-emphasis on coercive and institutional models of care. For example, Black service users are more likely to have their first contact with mental health services through the police. Second, professional and organisational requirements are focused on, at the expense of the individual’s needs. Lastly, institutional racism continues to be a problem within mental health care. Evaluating drop out rates is an important aspect of assessing the quality of a service and service users’ experiences. Although the term is difficult to define (Hamilton, Moore, Crane and Payne, 2011; Eldridge, 2009), a drop out tends to be someone who terminates therapy earlier than agreed and against the advice of the therapist (Bennett & Kennedy, 2004; Ogrodniczuk, Joyce and Piper, 2005). The rate of drop outs across services varies with some citing 46.86% (Wierzbicki, & Pekarik, 1993); 43.8% (Bados, Balaguer and Saldaña, 2007) and 31-36% (Smith, Koenicsberg, Yeomans, Clarkin & Selzer, 1995). A range of factors, both clinical and demographic may predict drop outs. Research focused on clinical factors such as diagnosis suggest individuals with psychosis and substance misuse (Hamilton et al. 2011) and those with anxiety disorders (Arnow, Blasey, Manber, Constantino, Markowitz et al. 2007, Bennett & Kennedy, 2004) are more likely to drop out. In addition, the motivation to change (Brogan, Prochaska & Prochaska, 1999; Simpson & Joe, 1993) and the strength of the therapeutic relationship are predictors of drop out. Demographic factors including ethnicity (Arnow et al. 2007; Wierzbicki & Pekarik, 1993), low income (Arnow et al. 2007; Wierzbicki & Pekarik, 1993); less education (Fenger, Mortensen, Poulsen & Lau, 2011), younger age (Simon & Ludman, 2010, Bennett & Kennedy, 2004), and male gender (Agosti, Nunes, Stewart & Quitkin, 1991) tend to predict dropout from psychotherapy. However, some studies have found that demographic factors do not predict dropouts (Piper, Ogrodniczuk, Joyce, McCallum, Rosie, O’Kelly & Steinberg, 1999; Eldridge, 2007) or are not strong predictors in relation to clinical variables (Davis & Addis, 1999). In addition, many studies are retrospective and look at drop outs after they have occurred and are thus dependent on accurate record keeping of demographic data (Bischoff & Sprenkle, 1993). Drop outs can be frustrating for both the therapist and the service as both time and money are wasted (Bischoff & Sprenkle, 1993). Although drop outs tend to be viewed as problematic for services, they are not always a negative reflection of a service. Not all service users terminate therapy because they are dissatisfied with the service; their reasons

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may be unavoidable and may be a result of factors external to therapy (Ogrodniczuk et al. 2005) or because they have improved (Hamilton, Adam, Moore, Crane and Payne, 2011).

Method Aims The project aimed to answer two questions:

1) Phase One: What are the barriers that BME service users experience when accessing the service and are there ways in which the service can facilitate access?

2) Phase Two: What are the experiences of BME groups engaging in therapy and what can the service do to improve this?

Phase One Design & development of the Questionnaire A quantitative and qualitative survey design was used to deliver a structured, self-report questionnaire consisting of open and closed questions. A questionnaire was deemed appropriate for an initial contact as BME service users are classed as a vulnerable group and therefore they may feel safer responding openly and honestly to a questionnaire than a face to face contact (Liamputtong, 2007). This may be particularly important if some of the service users have had negative experiences and do not feel comfortable speaking about it in an interview, though confidentiality would be guaranteed it may still seem risky to the service user. The questionnaire (see Appendix 1) was devised incorporating several items from the literature (Bennett & Kennedy, 2004), along with other elements that were felt to be relevant by the service. The questionnaire consisted of six questions; the first question explored the service users knowledge of the referral, psychological therapy, view on information provided and motivation to attend on a Likert type scale. The second question was made up of a series of tick boxes reflecting factors identified in the literature that influence BME uptake and access. Three of the questions were open ended to elicit reasons why someone stopped attending and factors that may have facilitated access. The last question asked the service users to rate the service they received. Additional data was collated regarding self-reported ethnicity and number of sessions attended. Feedback was sought from the Clinical Governance Lead and the Service Lead for Psychology and Psychotherapy following the first draft. Some of the feedback was around including an option stating “Cultural background/race of therapist” for question 2, as this was a particular issue that the service was interested in. R&D Approval & ethical considerations The SEP did not require ethical approval having met the standards for a SEP (NPSA, 2008), which was formalised through a review and approval by the LYPFT R&D

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Department (see Appendix 2). All data was kept confidential and anonymised, in line with guidelines (BPS, 2010). Consent was implied if the service user returned the questionnaire. Sample The Trust’s IT department provided a database of all BME service users that had been discharged over a two year period (2011-2013). There were a total of 210 service users, details of which are provided in the table 1:

Ethnicity N = 210 Asian 90 (43%) Black 49 (23%) Chinese 4 (2%) Mixed 36 (17%) Other Ethnic Group 31 (15%) Referral Classification Assessment not progressed/did not respond to partial booking letter

55 (26%)

Did not attend assessment 23 (11%) Assessed but not commenced on treatment 77 (37%) Dropped out within 1-6 sessions of therapy 14 (7%) End of treatment 41 (20%) Average number of sessions attended 4 (0-75) Average length of treatment 58 days

Table 1: Ethnicity, referral classification, average number of sessions and length of treatment for the entire sample

Procedure The 210 service users were each given a unique identifier to maintain anonymity, details of which were only available to the Trainees working on the SEP. All 210 service users were contacted by post in January 2014 with a cover letter (see Appendix 3) explaining the purpose of the study, a detailed information sheet (see Appendix 4), a questionnaire and a pre-paid envelope in which to return the questionnaire. Following this a reminder letter (see Appendix 5), was sent four weeks later to 185 service users who had not returned their questionnaire. The initial plan had been to send the questionnaire again with a pre-paid envelope to facilitate uptake, however financial restrictions within the service meant that this was not approved. Therefore this may have significantly affected the response rate the second time round. Analysis Descriptive statistics are reported for the quantitative data. However the open ended questions were analysed using thematic analysis (Braun & Clarke, 2006) (see Appendix 6). Thematic analysis is a qualitative method for identifying and analysing important patterns or themes in data in relation to the aims of the study (Braun & Clarke, 2006). Thematic analysis was utilised because it is fluid and flexible and it is not wedded to any pre-existing theoretical framework (Boyatzis, 1998). The thematic analysis was conducted by the Trainee and consensus was sought from the Service Supervisor and University Tutors.

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Quality Checks A number of quality checks were put in place to further control for potential bias (Elliott, Fischer, & Rennie, 1999; Swanborn, 1996). During the development of the questionnaire we sought feedback from a number of key people in the Trust such as the Clinical Governance Lead and the Service Lead for Psychology and Psychotherapy. Also the results and themes emerging from the questionnaires were shared with colleagues to gain feedback on analysis but also as a way to check the credibility of the themes (Mays & Pope, 2000). Phase Two At the end of the questionnaire service users were asked to indicate whether they agreed to be contacted for a telephone interview. Data from these interviews was used to answer the second phase of the SEP. Service users were asked a standard set of open ended questions about their experience of the service, therapy and the therapist. They were also asked to elaborate on any answers and comments they made on the questionnaire. The semi-structured interview schedule can be seen in appendix 7. Doing a focus group was considered as the service users may have found it helpful to meet together and share their experiences. However, as we were unsure about the response rate we wanted to make the SEP as accessible as possible and felt that some people might be reluctant to attend a focus group. This could be for various reasons, such as having to return to a service they may not have engaged with, finding the time to attend and having to talk about their experiences amongst strangers. Analysis Data was analysed qualitatively using directed content analysis, a structured approach where analysis tends to be driven by existing theory or research (Hsieh & Shannon, 2005). The rationale for this is that there is already a large amount of literature about access and engagement with psychological therapy services. Therefore, my colleague and I already had some preconceptions about some of the content which may emerge from this project. It was this literature which guided the development of the questionnaire and subsequently the semi-structured interviews. Therefore, initial codes included issues around addressing culture in therapy and being able to develop a therapeutic relationship. An advantage of this is that the results can be used to support existing theories; however, it also means that the questions and analysis can be subject to bias (Hsieh & Shannon, 2005).

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Results Figure 1 shows the number of participants who took part in the entire study.

Figure 1: Consort diagram of the participants who took part in the study

Phase One Quantitative Results Demographics of the responders A total of 29 questionnaires were returned, yielding a response rate of 14%. There was a significant difference between the number of responses following the first post-out (25) and the second (4). This data is shown in Table 2. The ethnicity of the respondents was proportionate to the entire sample, individuals identifying as Asian, Chinese and Mixed race were well represented whereas individuals identifying as Black were less well represented. In terms of the referral classification 62% of the sample had been assessed but not commenced onto treatment and 24% were classified as having not responded to the initial booking letter. However there was some

Questionnaires sent out (n=210)

Response to questionnaires (n=29)

Agreed to telephone interview (n=15)

Interviewed (n=9)

Analysed (n=9)

Excluded (n=6) Refused = 1

Interpreter required = 2 Unable to contact = 3

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variation between the status of the referral reported by the service users and the referral classification on the Trust’s electronic system (Appendix 8). A number of possible reasons for this were discussed such as the service user may not have been able to accurately recall how many sessions they attended or how the referral came to an end and that the service user may not have differentiated appointments at the LPPS with those they had with their CMHT. There was also some discussion around whether clinicians were accurately inputting data into the system too.

Ethnicity N = 29 Asian 13 (45%) Black 4 (14%) Chinese 2 (7%) Mixed 7 (24%) Other Ethnic Group 3 (10%)

Table 2: The ethnicity and referral classification for all the respondents

Questionnaire Quantitative Results Figure 2 illustrates the quantitative results of the questionnaire. Each will be discussed in detail.

Figure 2: Quantitative results from the questionnaire

Referral Classification Trust Database

Reported by SU

Assessment not progressed/did not respond to partial booking letter

7 (24%) 3 (10%)

Did not attend assessment 1 (3%) 0 (0%) Assessed but not commenced onto treatment 18 (62%) 5 (17%) Dropped out within 1-6 sessions of therapy 0 (0%) 8 (28%) End of treatment 3 (10%) 13 (45%)

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Awareness of referral to LPPS One of the first questions asked was in relation to how aware the service user was of the reasons for referral to LPPS, this would be based on the information given to them by their referrer and any letters that they received. The results highlighted that an overwhelming 86% (25) were aware of the reasons for referral to LPPS. Only 1 (3%) of the service users said that they did not know the reason for referral and 3 (10%) weren’t sure. Understanding of “Psychological Therapy” The questionnaire also tried to ascertain whether service users had any understanding of what “psychological therapy” was. This would also include knowledge of the different types of therapy they could receive, the length of treatment and issues around confidentiality. The results highlighted that there was some variation in knowledge and understanding of “psychological therapy”. 52% (15) of the service users said that they did know what “psychological therapy” was, whereas the rest either did not know (7, 24%) or weren’t sure (7, 24%). Information provided by LPPS One of the questions looked at whether the information provided by LPPS was sufficient and adequate, such as in relation to any letters that they received, the service website and information leaflets. Once again the results highlighted significant variation in regards to whether it was felt that the information provided was sufficient. 9 (31%) of the service users said that they did not feel the information provided by LPPS was sufficient. 59% (17) said it was sufficient and 10% (3) said they weren’t sure. Motivation to attend LPPS also wanted to know how motivated service users were to attend their appointment and whether they felt it would be useful for them to attend or that therapy could help them get better. The results highlighted that an overwhelming 83% (24) were motivated to attend and felt that “therapy” could help them get better. Only 1 (3%) service user said that they did not feel it would be useful for them to attend and 4 (14%) weren’t sure. Factors endorsed that affected access Service users were given an option to endorse one or more tick boxes to indicate whether any factors affected their ability to access the service. The following graph (Figure 3) indicates the number of people who endorsed a particular factor.

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Figure 3: Some of the factors highlighted by service users that affected their ability to access the service

The factors were grouped into categories such as; therapist factors, service related factors, external factors and client factors for ease of reference. Certain factors were consistently reported by service users particularly in relation to not getting along with their therapist, type of therapy offered, lack of information and transport issues. Some service users highlighted other factors that affected their ability to access the service, such as not getting full support due to their ethnic background and not being seen when they were at their worst. Qualitative Results Qualitative responses to the two open ended questions “If you stopped attending the service, what was the reason(s)?” and “what would have made it easier for you to attend/continue attending?” were analysed using thematic analysis. A thematic map of the qualitative analysis is presented and each theme is discussed in detail.

0 2 4 6 8 10 12

Embarrassed about talking

Therapy not right at time

I felt better

Probs with transport

Lack of support from family

Lack of Info

Time/place of appt not convenient

Did not like the type of therapy offered

Difficulty getting along with Therapist

Gender of Therapist

Culture/race of Therapist

Clie

ntFa

ctor

s

Exte

rna

lFa

ctor

s

Serv

ice

Rel

ated

Fact

ors

Ther

apis

tFa

ctor

sWhat are some of the barriers you experienced? (n

= 22)

15

Figure 4: Thematic map of the themes that emerged from the data

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The service users identified a number of barriers to accessing LPPS as well as ways in which access could be facilitated by the service. Seven themes were identified in relation to barriers to accessing the service and a further four subthemes were identified in relation to how the service could tackle that barrier. Perceptions about Mental Health Services BME service users identified a number of perceptions that they held about Mental Health Services including LPPS that affected their ability to access the service.

“I didn’t think anyone would understand me or care.” (Participant 22 - Black man)

Some of their perceptions about LPPS were that their world view, reality and cultural position would not be understood as well as that clinicians would not be able to show them empathy. Stigma Some of the service users highlighted cultural specific stigma associated with mental health and “talking”. They illustrated how they experienced “double stigma” (Gary, 2005) when accessing LPPS i.e. being a member of a minority group and experiencing mental health problems. .

“If someone could understand where I was coming from, it’s hard for an Asian man to come and to just talk.” (Participant 21 – Asian man) “Mental health remains a very big problem to overcome in the Asian community. This needs desperate and immediate attention by health care workers. I wasn’t able to talk to family about my problems because of fear of being labelled” (Participant 24 – Asian woman)

One of the key points made by several service users was the importance of understanding how their culture/ethnic background and mental health intersect when trying to access LPPS, therefore some cultural awareness among clinicians was seen as helpful.

“I felt like I was crazy and that the therapist couldn’t understand that certain things in our culture are normal.” (Participant 26 – Asian man) “Not getting full support due to my ethnic background” (Participant 1 – Asian woman)

Uncertainty Service users highlighted a number of uncertainties when trying to access LPPS. They shared that there was uncertainty about the relationship with the therapist, uncertainty

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around what would happen in “therapy” and uncertainty around their mental health and making sense of their difficulties.

“If I knew what was going to happen, if I could meet the person before to see if they understand me.” (Participant 22 – Black man) “After a consultant psychiatrist said its either depression with psychosis or schizophrenia, it amazes me that early intervention in psychosis said its anxiety with depression, resulting in no help and living with severe mental illness all my adult life.” (Participant 18 – Mixed race man)

Lack of Information Lack of information was a common theme that most service users emphasised, particularly information about the service and mental health. This was also emphasised by the fact that 7 service users had highlighted that lack of information had contributed to their inability to access the service in previous questions.

“Not enough information.” (Participant 22 – Black man) “More information giving on how to cope with the problem.” (Participant 1 – Asian woman)

Disadvantage Service users highlighted that they experienced a number of disadvantages when trying to access the LPPS, notably financial disadvantage and disadvantage due to their disability.

“The location was too far away I would have used 4 buses on a round trip.” (Participant 28 – Eastern European man) “Distance and transportation problems.” (Participant 7 – Asian man) “Aire Court in Middleton is not easy to get to, a location closer to LS15, I am also disabled.” (Participant 14 – Mixed race woman)

Service users highlighted that they felt that LPPS should be flexible in terms of time, location and amount of sessions when it comes to dealing with disadvantaged groups.

“There was inflexibility in the date and time the therapist could see me…not practical at all.” (Participant 28 – Eastern European man)

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“A slightly later appointment time would have helped to synchronise with public transport, not impossible but it would have been easier if it was more local.” (Participant 29 – Black woman)

Waiting times The amount of time service users had to wait before they were offered an appointment also played a role in whether they accessed the service or not.

“The appointment had come too late and I needed to be seen when I was at my worst” (Participant 29 – East European Man) “I was repeatedly told “I don’t have to be here” by a therapist trained in psychodynamic therapy after waiting 9 months for help” (Participant 18 – Mixed Race Man)

It is recognised that LPPS is currently experiencing large amount of referrals and often service users have to wait at least 6 months before an appointment is offered. However perhaps maintaining contact during this period would have helped to tackle some of the anxiety associated with “waiting”. In contrast some of the service users highlighted how much the therapy meant to them because of the long wait they had endured. Unplanned Ending Many of the service users highlighted how they had been abruptly discharged without any explanation or communication.

“I didn’t stop they discharged me and stopped seeing me” (Participant 1 - Asian woman) “I wasn’t getting any more appointments…I would have carried on going as I need all the help I can get” (Participant 19 – Mixed Race Man) “I didn’t stop they discharged me. I have never tried your service” (Participant 10 - Asian woman) “They made me stop my sessions because I missed one for my Eid” (Participant 13 - Asian woman)

Service users expressed how some of them had experienced unplanned non-collaborative endings. This too was felt as a barrier to accessing the service. Discussing endings and discharge can be a difficult conversation, however service users may benefit from gaining a fully informed closure.

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Phase Two Table 3 displays the demographic and referral details of the participants who took part in the telephone interviews. The referral details are based on the service user’s reports of how many appointments they attended; many were not aware of which sessions were assessment sessions and which were therapy sessions, therefore, the two have not been separated.

Participant demographics, N=9

Asian 4

Mixed race 4

European 1

Female 4

Male 5

Age range Mid 20s-late 50s

Number of sessions attended, N=9

Dropped out within 1-6 therapy sessions 5

Attended 6-12 therapy sessions 1

Completed therapy 3

Table 3: Participant demographics and number of sessions attended

Emergent themes from the data Figure 5 shows the categories and subcategories which emerged from the analysis. Each subcategory included the number of participants who said something which related to the category.

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Figure 5: The categories and subcategories that em

erged from the data

Categories

Discu

ssing cu

lture

'They n

ever asked m

e abo

ut m

y cultu

re' (n

=8)

'I told

them

abo

ut m

y faith, b

ut th

ey did

n't

seem to

listen o

r see it as imp

ortan

t' (n=1

)

The th

erapeu

tic relation

ship

'I do

n't feel th

at they fu

lly un

dersto

od

me'

(n=5

)

'I felt listened

to an

d u

nd

erstoo

d' (n

=4)

Meetin

g the service u

ser's need

s

'We d

on

't get asked ab

ou

t ou

r views' (n

=3)

'The th

erapist's p

references are ch

osen

o

ver the service u

ser's preferen

ces' (n=2

)

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Discussing culture “They never asked me about my culture” Except for one, all service users stated that they did not think it was necessary to have a therapist from a similar cultural background. However, the majority of them said that although their cultural needs were not necessarily central to the problems they came to therapy with, they were not asked about their culture. For example, one person said:

“[They] never asked me about my culture, it felt very business-like, [they] don’t tailor it to the individual”

When culture was discussed it felt very limited:

“We spoke about my culture and the therapist was good, but the amount I could talk about my culture felt very limited by the therapist’s lack of training”

“I told them about my faith but they didn’t seem to listen or see it as important” One service user found their experience of talking about their culture with their therapist quite negative. The service user described their Islamic faith as central to their culture and felt it was important to discuss it within therapy; however, they were disappointed by the therapist’s lack of interest in discussing it. It was for this reason that the service user decided to discontinue therapy. The therapeutic relationship “I don’t feel that they fully understood me” All five service users who dropped out within 1-6 therapy sessions reported that they found therapy unhelpful and all of them pointed to the lack of warmth and empathy they received from their therapist.

“The therapist was not warm or empathic” There was a sense that the therapist did not understand them and was not interested in them as an individual.

“The therapist didn’t seem interested in me as a person” They felt unsupported and that their problems were not taken seriously:

“The therapist kept telling me that I didn’t need to be here……so I left”

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“I felt listened to and understood” Some service users reported having a good experience of the service and felt that therapy had been helpful. In all of these cases, the therapist was reported to have been warm and friendly, interested in what the service user brought and made attempts to meet all of the service users’ needs. Three of the four service users who reported this completed therapy, the fourth service user who reported this completed 6-12 sessions of therapy, it is unclear why they did not complete the full course of therapy.

“I got on well with the therapist; [they] met all my needs”

“The therapist was understanding and empathic”

“It’s the type of therapist, [they] showed empathy, [they] were open, the therapist went beyond [their] job, it makes it easier to go to therapy”

Meeting the service user’s needs “We don’t get asked about our views” Three service users reported that there were aspects of therapy which they did not find helpful, and in some cases they did not understand the therapist's rationale for certain interventions. One service user also described how they kept requesting CBT but was instead given psychodynamic psychotherapy. These are the same service users who reported a poor relationship with the therapist and dropped out of therapy.

"[They] kept telling me to imagine lying on a beach when all I wanted to do was talk to [them] about my problems'

“I didn’t tell [the therapist] that therapy was not helpful and [they] did not ask me”

There were mixed feelings and understandings as to why this was the case. For some, they saw the therapist as someone in a position of power and felt that it was not their place to question what was happening. For others, they felt that if they did raise any concerns they would not be listened to.

“[They] saw that I’m Asian and probably thought that I don’t know what I’m talking about”

‘The therapist’s preferences are chosen over the service user’s preferences’ Similar to the theme of feeling that they were not asked about their views, two of the service users felt that their needs were not prioritised over that of the therapist. One service user even complained that issues around their disability were not considered but seemed to

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be based on what was most convenient for the service. These two clients also reported a poor relationship with the therapist and dropped out of therapy.

“[They] asked me what day was convenient for me, I said……but [they] said that [they] could not do that day. So I had to do what was convenient for [them]”

Discussion What are some of the barriers to accessing the service and are there ways in which the service could improve? When the service evaluation was first commissioned the dominant narrative in the service was that BME service users either did not respond to an initial appointment or dropped out of therapy. However the results actually suggested that BME service users experienced a number of different barriers at different stages in their pathway at LPPS. An initial review of the Trust Electronic System revealed that non-response and drop-outs were actually quite rare and that a large proportion of BME service users were being assessed but not commenced onto treatment. Therefore it became apparent that the assessment stage was one of the barriers that BME service users experienced when trying to access psychological therapy. A large number of service users were assessed but not commenced onto treatment, highlighting that clinicians were consistently making the decision to not offer psychological therapy to BME service users. Campling (1989) suggests that therapists worry that their lack of cultural sensitivity may cause them to do more harm than good, this may be one of the reasons why such a large proportion of BME service users were not offered psychological therapy. The rejection of BME service users as potential candidates for psychotherapy has been frequently noted in the literature (K. Bhui & Bhugra, 2002), but can go unrecognised in services. Furthermore Bhui and Morgan (2007) suggest that there are significant cultural variations in the way distress is communicated, and therefore if therapists aren’t aware of these differences then it can unduly influence their decision to not offer therapy (Dogra & Karim, 2005). One way to tackle this is to gain insight into perceived levels of cultural competency amongst clinicians. Results of the questionnaires highlighted that knowledge of the referral and motivation to attend were not identified as key barriers by BME service users, on the other hand understanding of “psychological therapy” varied. This can be supported by a study by Shoaib and Peel (2003), who interviewed Kashmiri women about the meaning of mental illness and their perception of counselling. They found that the women had a clear understanding of mental illness, most specifically as a problem in one’s “heart”. In terms of their understanding of therapeutic services, the majority of them were not aware of counselling but still wanted to talk to professionals about their emotional distress, they conceptualised these conversations as talking about one’s feelings, problems in one’s heart, in one’s mind and as a means of support when experiencing distress. This study highlighted

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the need for individualised and targeted information on services for BME service users. Therefore one way to facilitate access may be through turning an “unknown mystery into a known mystery” (Gilkinson, 2009, p. 158). Part of this may involve developing information leaflets that resonate with BME service users, such as describing mental illness and psychological therapy in a way that fits with their understanding. This is particularly important because “talking” and “caring” are not new concepts to BME service users but words like “therapy”, “mental illness” or “psychotherapy” may not be familiar to them (Kamaldeep Bhui & Morgan, 2007). Issues around perceptions of mental health services and stigma were also pertinent barriers to access. BME service users can hold very negative perceptions of mental health services mostly due to past experiences, this can be reduced through the way LPPS presents itself to BME communities via community engagement or increasing the presence of BME staff (Knifton, Gervais, Newbigging, Mirza, Quinn, Wilson, & Hunkins-Hutchison, 2010). Some recent studies have been investigating the role of ethnic-matching on access and engagement (Ziguras, Klimidis, Lewis, & Stuart, 2003). However these studies rarely investigate therapist variables such as cultural awareness and sensitivity (Karlsson, 2005). Clearly service users in this study highlighted that cultural sensitivity and awareness was more important than matching, this is also in line with the literature. Finally a large proportion of service users highlighted issues around financial and social disadvantage as a barrier to them accessing the service, such as in relation to transport. This is not a new finding as the relationship between social deprivation and access to psychotherapy has been documented in the past for example Self and colleagues (2005) in their study using the Townsend Deprivation Score found that service users who failed to attend their first appointment had significantly higher social deprivation scores than those who completed therapy. They also found that service users who stopped attending before their fifth therapy session had higher social deprivation scores than those who stopped attending later and those who completed therapy. This suggests the need to bear in mind the social circumstances of BME service users and to facilitate access through making them aware that they could be eligible for financial support and to engage in a discussion about which venue would be more convenient for them. What are some of the experiences of service users engaging in psychological therapy? Power dynamics in therapy Throughout recent history ethnic minorities have experienced more discrimination and disadvantages compared to the white majority. The difference between those who discriminate and those who are discriminated against is the amount of power each one has (Kavanagh & Kennedy, 1992). This power dynamic may be further exacerbated by the power that exists between the therapist and service user (Hertzeberg, 1990). People from BME backgrounds may view the therapist as an authority figure who is expected to have all the answers. Lo and Fung (2003) liken this to going to the ‘village elder’ who is regarded as someone with a lot of knowledge and wisdom. This dynamic may

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put the service user in a difficult position of voicing concerns and making suggestions in therapy. Professionals hold a lot of power and individuals may feel silenced and often fear challenging them (Keating & Robertson, 2004). By failing to acknowledge the power dynamics within therapy, therapists may often recreate power imbalances which are experienced outside of therapy (Walker, Burman & Gowrisunker, 2010). Five service users felt that their needs were not being met and two of them felt that the therapist’s preferences were chosen over theirs. As the service has various locations, service users are asked which location they would prefer to be seen at. However, some service users found that they were given this preferred location for their assessment but were not given their preferred location when they were allocated a therapist to commence therapy. Understandably, this allocation may have been done on the basis of which therapists were available. However, the service users may have perceived this as the therapist’s needs being privileged over theirs, which may reflect their experiences in society. Addressing culture in therapy Culture may be defined as a shared system of beliefs, values and perspectives held by a particular race/ethnicity or geographical region (Asnaani & Hofmann, 2012). Culture has a large influence on how people live their lives, the beliefs they hold and the decisions they make including how people view mental health. For example, Sullivan et al. (2006) suggest that a belief held in some black cultures is the belief that coping is an act of will and to not be seen as coping is a sign of weakness. Although it is important not to assume that all black people hold this view, this may influence how someone engages and responds to therapy. Similarly, in some Asian American families discussing a problem may be seen as shameful (Sullivan et al. 2006). If this view is held then again it is likely to have an influence on how someone engages and responds to therapy. The lack of acknowledgement of a service user’s culture is not unique to this study. Rathod et al. (2010) found that therapists often avoided talking about race and culture through fear of saying the wrong thing or not being politically correct. In addition, many felt that they did not have sufficient training to address racial issues within therapy. RAWOrg (2011) reported that only 21% of the people they sampled agreed or strongly agreed that staff were sensitive and considerate of their culture. However, this was very a small sample and there are limits as to how much may be concluded from this. However, Meyer and Zane (2013) found that when ethnicity and race was not included in their care, service users reported less satisfaction with their treatment. Many policies aimed at improving access and experiences of BME groups highlight the importance of developing a culturally competent workforce (e.g. Jassi, 2008; DoH, 2003 and Delivering Race Equality (DoH, 2005)). Although these reports were among the first to highlight the national need to improve services for BME groups, some have criticised them for not meeting the standards they set out to achieve (RAWOrg, 2011, Bhui, Mckenzie & Gill, 2004). A culturally competent professional is someone who appreciates and recognises other cultural groups and is able to work with them. Therapists should ‘bridge the gap’; they

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should show interest in a person’s culture and be comfortable about integrating it into therapy (Sue, 1998). This includes asking about immigration history, family structure, and beliefs about psychopathology (Sullivan et al. 2006). Sue (1998) uses the term ‘scientific mindedness’ to describe a therapist who may form a hypothesis about a member from another cultural group but will not jump to premature conclusions. Cultural competency may also be measured by how much a therapist feels they have the ability to manage cultural issues in therapy (Asnaani & Hofmann, 2012). Spirituality can be defined as something which is of particular value to an individual (King-Spooner, 2001). Service users do not necessarily expect their therapist to share their religious and/or spiritual views, but they do expect them to have some knowledge and to respect it as an important aspect of the service user (Weatherhead & Daiches, 2010). Enquiring about an individual’s spiritual and/or religious beliefs can facilitate further understanding of the service user (Gorsuch & Miller, 1999) and should be incorporated into therapy (NICE, 2011). Building a therapeutic alliance Literature has frequently emphasised the importance of building a therapeutic alliance to facilitate the process of therapy. Those who report having a good relationship with their therapist report more satisfaction with therapy (Knuuttila, V., Kuusisto, K., Saarnio, P. & Nummi, T, 2012) better outcomes (Horwavth, Del Re, Fluckiger & Symonds, 2011) and are less likely to drop out of therapy (Sharf, Primavera & Diener, 2010; Huddy, V., Reeder, C., Kontis, D., Wykes, T. & Stahl, D. 2012). Therapists who are more empathic have better outcomes (Podell, Kendall, Gosch, Compton, March et al. 2013; Knuuttila, Kuusisto & Saarnio, 2011). In addition, empathy, warmth and the therapeutic relationship are better predictors of outcome than the type of intervention (Lambert & Barley, 2001). All service users highlighted the importance of the therapist’s approach; for those who described a good relationship with their therapist there was a sense that the therapist was not just doing a job or being ‘business-like’, they also felt ‘listened to and understood’. This perception although important for anyone going into therapy, may be particularly important for BME service users who may already be suspicious of the service (The National service Framework for Mental Health, Department of health, 1999; Thompson, Bazille & Akbar, 2004; Keating & Robertson, 2004). If the therapist failed to find out about the service user’s culture, beliefs and values then it is likely that they did not have complete understanding of the service user and thus were unable to tailor the therapy to the individual and develop a good working alliance. Limitations Sample Though there are a number of strengths to this study, there are also some limitations. Firstly the sample size of 29 and response rate of 14% was low for a questionnaire-based study. However the response rate wasn’t dissimilar from other studies involving BME groups in the UK, for example Garcia and colleagues (1998) had a response rate of 7.4% and Redshaw and Heikkila (2010) had a response rate of 14%. Furthermore the questionnaire

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sample consisted mainly of BME service users who had been assessed but not commenced onto treatment (62%), therefore we were unable to get the views of service users who dropped out or who did not attend their assessment. A sub-group analysis could have yielded more specific barriers to access depending on at what stage they stopped attending, however we were not able to do this with our sample. The results and conclusions in regards to engaging with the service are drawn from nine BME service users out of a possible 210 over two years. Although the emergent themes are consistent with the literature there are limitations as to the generalisations that can be made about BME service users’ experience of the service. In addition, it is possible that only those who had a particularly negative experience of the service and were eager to express their views were interested in taking part. As such many of the service users may have had an adequate experience of the service but for one reason or another declined to take part in this study. Service users who had contact with the service over two years were recruited; there may be limitations as to how much they remembered about the experience, including the number of sessions attended. In addition, some of the service users had accessed a range of services before and after this service, thus there is a possibility that their comments may have been about a different service. Defining drop outs The biggest limitation of many studies looking at drop out rates is the lack of consensus on what a drop out is (Bischoff & Sprenkle, 1993) which may explain the wide variation in drop out rates across different studies (Connell, Grant & Mullin, 2006). For this study it is not clear how the service defines drop outs. In addition there are significant differences between the service user’s reported number of attended sessions and the record of attended sessions kept by the service. There was also no distinction between a service user who had disengaged with a service and had stopped making contact from someone who had let the service know that they would no longer be attending their agreed sessions. Qualitative methodology There are some inherent difficulties around interpretation of qualitative data. Though a thematic analysis was conducted as part of Phase One, a more stricter adherence to a model of interpretation may have been useful (Braun & Clarke, 2006). It could also be argued that the researchers interpretations of the data may have been privileged over the service users and if it had been possible seeking some form of validation of the interpretations from the service users may have added further validity to the findings. The Phase Two interviews were not transcribed; instead notes were made these notes served as the data for the analysis. It was difficult to conduct the interview, listen to what the service user was saying and make notes at the same time. Thus it is likely that at some points during the interview we may not have captured the exact words the service users said.

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Recommendations It appears that BME service users experience a number of barriers when trying to access and engage with LPPS, some of these are external, however some are service related. This gives us some scope to put into place changes that may facilitate access. The following recommendations are made as a way to begin this process. These conclusions and recommendations are in line with the main goals of the Governments Delivering Race Equality in Mental Health Care Action Plan i.e. more appropriate and responsive services, the importance of community engagement and developing better information (DoH, 2005).

x A review of the number of BME service users who are assessed but not commenced onto treatment, with a rationale for this.

x A service evaluation/case file review of how referrals come to an end, looking at the Trust database and service user perspectives.

x An evaluation of how to manage and remain in contact with BME service users who are on a waiting list and will remain on it for a number of months.

x To emphasise to all BME service users that they may be eligible for financial help with travel expenses to and from appointments

x Consider ways to engage the community and tackle negative perceptions of the service

x A BME service user group: The service runs a Service User Reference Group (SURG) which was set up to allow service users to have their say in how the service is run. For many of the service users interviewed in this SEP, this was the first opportunity offered to them to talk about their experiences not only within this service, but also other services. The service might want to think about how they could recruit more BME service users into the group. This could include mentioning SURG in the opt in letters and therapists mentioning it to the service user at the end of therapy. Attending SURG may enable them to feel more confident and empowered to talk about their experiences. In addition, if the service is able to build up a good relationship with the group, they may provide valuable opportunities for discussions around race and culture in therapy. BME service users could also assist with designing leaflets and developing letters. Representatives could also be recruited from third sector organisations such as Touchstone.

x Staff support and supervision: The service may find it useful to encourage staff to support and learn from each other in regards to working with culture and diversity. This could be done in a peer supervision group or there could be an allocated slot in one of the journal club sessions run by the service. If any staff would like to receive some more formal support or training, they or the service could contact the Community Development Service at Touchstone, a service in Leeds which aims to improve health and wellbeing particularly in BME communities. The service runs information and awareness sessions for mental health services including how to effectively engage BME communities.

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x Discussions about the process of therapy: o Service users may benefit from being told more about the different

interventions used in therapy. Ogrodniczuk et al. (2005) suggest that an audio or videotape or written material of an actual or simulated session may be helpful in preparing service users for therapy.

o Staff may want to engage in conversation about the process of therapy from the outset and be active in checking whether therapy is suiting the service user’s needs. Various measures such as the Agnew Relationship Measure (Agnew-Davies, Stiles, Hardy, Barkham & Shapiro, 1998), the Working Alliance inventory (Horvath & Greenberg, 1986) or the Session Rating Scale (Duncan, Miller, Sparks, Reynolds, Claud et al. 2003) and Outcome Rating Scale (Miller, Duncan, Brown, Sparks & Claud, 2003) and idiographic measures such as Goal Based Outcomes (Law, 2013) may facilitate this discussion.

x Senior management to disseminate the findings and recommendations across all teams

Future research

Although it is important to explore service users opinions and experiences it is difficult to get a coherent understanding of what happened without also talking to the therapist. A further SEP might look at interviewing BME service users about their experiences and then comparing this with the therapist’s views or clinical notes. The researcher, for example, may want to compare the therapist’s and client’s view of the therapeutic relationship to ascertain when and where disagreements and ruptures might occur. Therapists may not have asked service users directly about their culture; however, this is not to say that they did not ask them questions which may relate to culture, for example their beliefs about mental health. A further SEP might look at doing a staff focus group and facilitating discussion about addressing culture in therapy. This might include a scoping exercise looking at how culturally competent therapists feel and what sort of interventions could be useful such as staff training, professional development, booklets or supervision clinics.

Conclusion In summary the results of the SEP indicate a number of ways in which LPPS could better facilitate access as well as increase engagement in therapy. The evidence seems to suggest that there are a multitude of reasons why BME service users “do not make it to therapy” and part of this may be linked to how confident professionals feel in working with BME service users. It is also well known that the results of the SEP will not be “new” to some senior managers who have been in the Trust for a long time, but the SEP does raise important questions in relation to willingness to implement changes following feedback from BME service users. As this SEP was a joint venture between University of Leeds and LYPFT it is hoped that the findings will result in conversations at senior management level as well as a detailed action plan to implement some of the changes. In addition the SEP also

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outlines further research and SEP’s that need to be commissioned in order to continue to investigate why BME service users are more likely to be deemed not appropriate for psychological therapy and the level of confidence professionals feel in working with BME communities.

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Appendices

Appendix 1: Service Evaluation Questionnaire

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Appendix 2: R&D Approval

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Appendix 3: Cover Letter

Dear Please find enclosed an information sheet and questionnaire about your views and perspectives of the Leeds Psychology and Psychotherapy Service. The questionnaire will take no more than 5-10 minutes to complete. We would value hearing from you about your individual views and therefore would be grateful if you could complete the questionnaire and return it in the pre-paid envelope. We look forward to hearing from you soon. Diane Agoro Romana Farooq Clinical Psychologist in Training Clinical Psychologist in Training

UNI V ER S I TY OF L E ED S Doctor of Clinical Psychology Programme

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Appendix 4: Information Sheet

Black and Minority Ethnic (BME) Service User Questionnaire

What is the survey about? We are interested in finding out about your views and experiences of the Psychological Therapy Service at Leeds and York Partnership Foundation Trust. Any feedback is welcomed, whether it is positive or negative and it will be used to shape the future service we provide to other BME service users. Who is conducting the survey? The surveys will be done by Diane Agoro and Romana Farooq, Trainee Clinical Psychologists from Leeds University. They are independent from the service, but have been asked to conduct the survey on their behalf. Do I have to take part? Participation in the survey is entirely voluntary. You are not being asked to disclose any personal information about why you decided to have therapy and what the content of the therapy sessions were. Please be assured that all your feedback will be anonymous and will be presented in a report in a way that no individual service user is identifiable. You can withdraw at any time without any disadvantage to yourself of any kind. If you should require support or further assistance, either during or after the survey, this will be provided. What am I being asked to do? We would be very grateful if you could complete the enclosed questionnaire about your experiences of the service. Completing the questionnaire should take no more than 5 to 10 minutes. At the end you will be given the opportunity to agree to being contacted by phone or email to provide some more information about your experiences. This is optional and will only be a five minute conversation. The questionnaire can be returned using the prepaid envelope enclosed with this letter. We are interested in your experiences regardless of how long you used the service, even if you decided not to attend an assessment. Please be completely honest when filling in the questionnaire and tell us what you really think. It will be good for us to hear about the things that worked well for you, but we are equally interested in aspects of your therapy/ experiences that did not work well, in order for us to continue to improve the quality of our service provision.

UNI V ER S I TY OF L E ED S Doctor of Clinical Psychology Programme

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Will my information be kept confidential? All personal detail will be kept strictly confidential and will not be included in the report. However, the report may include your direct quotations from the questionnaires or interviews, these quotations will be anonymised so that you cannot be identified. We will not use any quotations which may identify you. A freepost envelope is enclosed to return the questionnaire. For any further information please contact: Diane Agoro/Romana Farooq Clinical Psychology Training Programme Leeds Institute of Health Sciences University of Leeds Room G.04, Charles Thackrah Building 101 Clarendon Road Leeds, LS2 9LJ Tel: +44 (0)113 3430829

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Appendix 5: Reminder Letter

Dear We sent you a questionnaire in February 2014 asking you for your views and perspective of the Leeds Psychology and Psychotherapy Service. We are writing to you again as a reminder to complete the questionnaire as we would value hearing from you about your individual views. The questionnaire will take no more than 5-10 minutes to complete and you can return it in the pre-paid envelope that was provided. If you would like us to send the questionnaire out again then please do not hesitate to contact us on 0113 343 0829 We look forward to hearing from you soon. Diane Agoro Romana Farooq Clinical Psychologist in Training Clinical Psychologist in Training

UNI V ER S I TY OF L E ED S Doctor of Clinical Psychology Programme

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Appendix 6: Thematic Analysis Guidelines

1. Familiarising with the data – involves transcribing, reading and rereading the data

and noting any initial ideas that come to mind

2. Generating initial codes – involves systematic coding of interesting features of the

data

3. Searching for themes – involves collating the codes into potential themes

4. Reviewing and refining themes – involves checking if the themes work as well as

generating a thematic map

5. Defining and naming themes – involves refining the specifics of the themes and

generating clear definitions of themes

6. Producing the report – involves selecting appropriate extract examples, relating

back to the research question and producing the report

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Appendix 7: Interview schedule

Semi-structured interview schedule (5-10 minutes) Introduction:

x Introduce myself to the service user and obtain their verbal consent to do the telephone interview

x Explain that the purpose of the interview is to share their experience and opinion of the service, the therapy and their therapist and that they do not have to share why they entered therapy and any other personal or sensitive information

Topics to be covered:

1) From your questionnaire you rated your experience of the service you received as (excellent/very good/good/fair/poor/very poor) could you tell me a bit more about that please?

2) Can you please tell me about how you found the therapist you worked with? a. Did the therapist ask you about your culture? b. How relevant was it for you to talk about your culture in therapy?

3) Do you have anything else that you would like to add or comment on; is there anything we haven’t covered?

Conclusion:

x Thank them for taking part x Advise that all comments will be kept anonymous but that direct quotations may be

used in the report and feedback will be given to the service.

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Appendix 8: Referral classification, self-reports versus service database Table illustrating a variation in the referral classification on the Trust Electronic System and what was reported by service users

Participant Referral Classification Self-reported Service Database

1 3 assessment sessions, 2 therapy & unplanned discharge

Assessed but not commenced onto treatment

2 6 assessment sessions, 8 therapy & discharged

Assessed but not commenced onto treatment

3 2 assessment sessions, 20 therapy & discharged

Assessed but not commenced onto treatment

4 20 therapy sessions & planned discharge

Assessed but not commenced onto treatment

5 Unknown Assessed but not commenced onto treatment

6 3 therapy sessions Assessed but not commenced onto treatment

7 1 assessment session & dropped out Assessed but not commenced onto treatment

8 1 assessment session, 12 therapy & planned discharge

End of treatment

9 1 therapy session & dropped out Assessment not progressed/did not respond to partial booking letter

10 1 therapy session & unplanned discharge

Assessed but not commenced onto treatment

11 1 assessment session, 6 therapy & planned discharge

Assessed but not commenced onto treatment

12 2 assessment sessions, 24 therapy & discharged

Assessed but not commenced onto treatment

13 2 assessment sessions, 6 therapy & unplanned discharge

End of treatment

14 1 assessment session, 20 therapy & planned discharge

Assessment not progressed/did not respond to partial booking letter

15 2 assessment sessions & discharged Assessed but not commenced onto treatment

16 2 assessment sessions, 34 therapy & planned discharge

Assessment not progressed/did not respond to partial booking letter

17 9 therapy sessions & discharged Assessed but not commenced onto treatment

18 2 therapy sessions & unplanned discharge

Assessed but not commenced onto treatment

19 Unknown number of sessions & unplanned discharge

Assessment not progressed/did not respond to partial booking letter

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20 2 assessment sessions, 24 therapy & planned discharge

End of treatment

21 2 assessment sessions & unplanned discharge

Assessed but not commenced onto treatment

22 Didn’t respond to appointment Did not attend assessment 23 6 therapy sessions & dropped out Assessed but not commenced onto

treatment 24 30 therapy sessions & planned

discharge Assessment not progressed/did not respond to partial booking letter

25 Unknown number of sessions & dropped out

Assessment not progressed/did not respond to partial booking letter

26 3 assessment sessions & dropped out

Assessed but not commenced onto treatment

27 Unknown number of sessions & Planned discharge

Assessed but not commenced onto treatment

28 1 assessment session, 3 therapy & dropped out

Assessment not progressed/did not respond to partial booking letter

29 1 assessment session, 19 therapy & planned discharge

Assessed but not commenced onto treatment