Islington Community Wellbeing Development Service Quarterly Community Conversation

Islington Community Wellbeing Development Service Quarterly Community Conversation BMER Communities and Cultural Competency in Mental Health Services December 2015 Susan Fajana-Thomas and Carena Rogers

Table of Contents Acknowledgements Background to the Community Conversation: Opening Remarks - Susan Fajana -Thomas Speakers’ Contributions Breakout sessions Let’s Talk! – question and answer session with the Speakers Recommendations Appendices

Acknowledgements We would like to thank all Community Conversation participants for their attendance and contributions. Your input has provided us with helpful information regarding BMER Communities and Cultural Competency in Mental Health Services in Islington. Thank you to the Speakers who shared their different perspectives and thoughts on: participation; co-production; equality; diversity; and training. These are important and broad reaching issues for Black, Minority Ethnic and Refugee (BMER) communities and these presentations helped us focus in the workshop discussions later in the programme. Thanks also to the Workshop Facilitators who did a good job in steering conversations and capturing thoughts and ideas. We equally appreciate our Volunteers whose support ensured that everyone was greeted when they arrived and that the day ran smoothly. Lastly, thank to Natalie Arthur and Chloe Collins from the Joint Commissioning Team for their pre planning support and for attending the event and being part of the Community Conversation.

Background The Community Conversation was facilitated by Susan Fajana-Thomas who provided an overview of the Islington Community Wellbeing Development Service and an outline of the day in her opening remarks. The Community Wellbeing Development Service is commissioned by the London Borough of Islington as part of the key measure to improve the Mental Health and wellbeing of the people of Islington and to reduce Mental Health inequalities for those from excluded communities. The second Community Conversation follows a recommendation made at our Mental Health Summit in November 2014 to build bridges between organisations, services and individuals as a priority issue in Islington. In particular, further work on how to offer holistic and personalised support to individuals from BMER communities was highlighted as needing development in Islington. In response to this, Islington Community Wellbeing Development Service brought people together to explore and debate participation, co-production, equality, diversity and training. This report aims to include an account of presentations, discussions and comments given at the Community Conversation event and is not an endorsement of those views. However, all evidence, ideas and thoughts were considered in the development of the recommendations presented at the end of the report. All comments and information gathered at the event will be shared with Islington Commissioners through this report.

Speakers Deborah Wright – Head of Social Work and Social Care, Camden and Islington Foundation Trust (slide 1) Deborah Wright outlined engagement and diversity focused activity that has happened in Islington over the last year, including undertaking a strengths and gaps audit of mental health provision in Islington. An Equality and Diversity Strategy is in place and acts as a working document within the Changing Outcomes Programme. This has been important in directing the Mental Health Trust’s decision making. Action Plan: Shabir Abdul, Equality and Diversity Lead; and Patrick Vernon, a non-executive director at Camden and Islington Foundation Trust are currently developing an action plan. This work will focus on understanding and removing gaps in provision as well as celebrating successes.

Speakers Deborah Wright – Head of Social Work and Social Care, Camden and Islington (slide 2) Deborah Wright highlighted some of the challenging work ahead: ● Refugee communities from places such as Afghanistan and Syria have specific needs for support /safeguarding and this needs to be offered quickly. ● Involving service users who have experienced trauma through Mental Health services in decision-making. ● Improving data available on diversity within workforce - there is currently not enough detail captured. ● Providing support for staff from BME communities to develop their careers and increasing numbers in senior positions. Some work is under way: ● Significant work on safeguarding in communities around domestic violence and sexual abuse, Female Genital Mutilation, forced marriage and organisational neglect. ● Rewriting Service User Involvement Strategy with service user input. ● Ensuring that all courses offered through Recovery College are culturally appropriate. ● Creating a Carers’ Welcome Pack’ to go alongside carers’ assessment process.

Speakers Clover Crumbie – Coordinator, Nubian Users Forum (slide 1) Nubian Users Forum (NUF) was set up under the Involving People Strategy in Islington. Clover Crumbie set out that 'culture' is hard to define, that it has different meanings for different people and that it is often very individual. It includes: ● My identity as I understand describe it ● My heritage ● The language that I speak and am spoken to at home ● My religious and spiritual needs Some of the difficulties currently encountered include: ● At the point that an individual is sectioned (detained under the Mental Health Act) they are not asked about what is important to them - assumptions are made based on where they come from or what they look like. ● Some cultural differences can lead to gross misinterpretation. An individual who talks loud can sometimes been seen as aggressive or even indicative of violence while a quiet, soft spoken individual is seen as easier to work with and more compliant. ● Multi-stigmatisation; Individuals encounter stigma from within their own communities as well as within the mental health service.

Speakers Clover Crumbie – Coordinator, Nubian Users Forum (slide 2) What needs to happen? ● A cultural assessment should be an integrated part of a mental health assessment, not an add-on. ● The taboo surrounding religious beliefs/personal values needs to be removed so that these can be included in diagnosis, treatment plans and recovery pathways. ● A recruitment drive to encourage more staff from diverse backgrounds to work within mental health teams and increase cultural knowledge, languages spoken and religious understanding. ● Training for staff on how to treat all individuals with dignity and respect. ● A continued and increased commitment to co-production in training for staff and sharing expertise by experience in development of services. ● Time given to allow current co-production projects to be embedded, e. g. the work with GPs and Recovery College.

Speakers Riya George – Researcher (slide 1) Riya George gave a comprehensive presentation that covered the history of Equality and Diversity Training in the UK. Her research shows that: ● The majority of trusts use cultural expertise models for training even though a body of research shows it is not effective. ● It is hard to differentiate between different Equality and Diversity Frameworks - very little progression over time. Most of the Frameworks come from the US rather than the UK. ● Since 2006 there has been a focus on monitoring tools. ● Initiatives are introduced sporadically and are reactive rather than proactive. ● Developments are politically driven and often miss clinical and personal expertise. ● There is very little evaluation of the effectiveness of policies or training, which means that there is no data on why nothing changes. ● There is the need to deviate from the norm to allow more working and co-production with communities. .

Speakers Riya George – Researcher (slide 2) Challenges for improving equality, diversity and cultural competency in mental health: ● Conceptually it is hard to define what key terms mean. ● Across Mental Health trusts and UK training there is varied content and delivery, which makes it hard to compare and evaluate. ● There are no well designed and validated tools to assess and evaluate Equality and Diversity training: ○ training is measured by feedback form ○ doesn’t capture whether training achieves outcomes or goals. Riya is currently working on a research project that is looking at data collection that can capture quality and content of Equality and Diversity training; and that will develop an evaluation tool to enable Commissioners to evaluate training and implementation. This will be published soon.

Speakers Natalie Arthur - London Borough of Islington Mental Health Commissioner Natalie Arthur commended the speakers and the amount of interest shown in this Community Conversation. She stated that Islington Community Wellbeing Service demonstrated what can be achieved if a focus is put on disadvantaged groups. She reaffirmed that Islington will continue to commission a Community Development service in the borough to ensure that services are diverse and focused on the needs of different communities in Islington. She also stated that the recommendations from the report into the first Community Conversation on spirituality and mental health had been considered and had resulted in actions being taken - for example inviting the Director of Hillside to sit on two high level strategic groups to ensure that issues of particular concern to BMER and LGBT communities remain a priority.

Break Out Sessions There were 3 breakout sessions and facilitators were asked to identify at least three key points to take forward. The following topics were discussed in these sessions: Topic 1: Co-production and developing cultural competency in mental health provision Facilitated by Sarah Lee, Healthwatch Islington Topic 2: Reducing denial of mental health conditions and increasing community responsibility within BMER communities Facilitated by Roy Parke, Islington Mind Topic 3: BMER service users’ ideas for improving mental health provision Facilitated by Carena Rogers, Islington Community Wellbeing Development Service

Feedback from Breakout session 1: Co-production and developing cultural competency in mental health provision (slide 1) What does co-production in mental health provision mean to you? • • • The ability to form partnerships. Sitting on decision-making boards, including sitting in appeals process. Holding people accountable. The statutory sector should have more of a responsibility – have a duty of care. Stress is being transferred to the voluntary sector. Third sector is picking up the slack – in a climate of limited resources. What does cultural competency in mental health provision mean to you? • • • Trying to find the identity of each person. Not making assumptions about people – people feel that they won’t be listened to. Language is important: terminology used and languages spoken. Mainstream services have a responsibility, it is not just about creating alternative routes. Needs long-term interventions. It is still about racism. Personal and professional development challenges bias. Breaking the ‘Western view’. Professionals being able to make a diagnosis and appropriate referrals. Social media offers new forms of engagement.

Feedback from Breakout session 1: Co-production and developing cultural competency in mental health provision (slide 2) What would good co-production and cultural competency in mental health services look like? “I would feel safe to talk as an individual rather than being put into a cultural box. ” Practitioners would be aware: • • • Of my needs: for care, for health. Of their own culture/bias that can impact on how they treat people. Of culture and individual need. Not to label people; not to put people in a box Not to alienate.

Feedback from Breakout Session 2: Reducing denial of mental health conditions and increasing community responsibility within BMER communities (slide 1) What is GOOD about your or your community’s understanding of – and reaction to mental health provision? • • Appropriate language is used. There are good examples of strong advocacy. Staff speak multiple languages. There is a sense of togetherness and understanding. What is NOT GOOD about your or your community’s understanding of – or reaction to mental health conditions? • • In African languages there are limited expressions for mental illness, e. g. ‘All madness’. There is a difference of treatment towards those who are considered mentally unwell within different cultures. Religion and spirituality has an impact. A minority of people from BME communities who are struggling with mental wellbeing are presenting to rough sleeping drop-ins potentially as a result of pride or community taboo.

Feedback from Breakout Session 2: Reducing denial of mental health conditions and increasing community responsibility within BMER communities (slide 2) Are there things that need to change so that people from BMER communities get the support they need? There needs to be: • A proactive approach towards directing finances and resources to improve services and training for BMER communities. The impact of NHS cuts on statutory services needs to be addressed. • More staff from BMER communities. • A specific mental health service to meet the needs of BMER communities. • More empathetic communication and increased information about what is happening and about what people’s options are. • Service users involved in training for staff; - NHS England • A holistic approach to support and treatment with an awareness of what else in someone’s life may be impacting on their mental wellbeing. Services need to address mind, body and soul. • Regular monitoring and evaluation by service users and staff. • Cultural competency training for non-statutory services – e. g. homeless drop-ins.

Feedback from Breakout Session 3: BMER service users’ ideas for improving mental health provision (slide 1) If you could change any aspect of the way mental health support is offered for BMER communities in Islington, what would you like to change? • • Lack of respect whilst in hospital, treated without dignity: left isolated before being seen; sedated before talked to; and background not understood. The way we are spoken to in hospital and the lack of choice in treatment. Receive services in own language; use of interpreter breaks relationship with therapist. Latin American women are an invisible community in which deprived clients are forced to access private services. Are there gaps in the types of mental health support that is currently offered for BMER communities in Islington? • Clinicians and professionals who can deliver services in community languages. • It is difficult for refugee communities to get funding, funding goes to mainstream organisations. • Funding reductions has an impact on quality of services provided. • GPs are often the first place people seek help but they only seem to know about statutory services and do not sign post people to community groups which could help. • Irish community is lacking services – especially 1: 1 support.

Feedback from Breakout Session 3: BMER service users’ ideas for improving mental health provision (slide 2) What would good mental health support for BMER communities look like? • More information for refugee and other small community groups about what Commissioners are looking for when they put out tenders for services – and support for applying for money, including support for partnership working. • Services for BMER communities need to be integrated into the mainstream, they should not be on the peripheral. Not just inclusion but full integration. • Greater choice of treatment for people from BMER communities – should not just be CBT or medication. • GPs should be more culturally sensitive and have equal knowledge of physical and mental health. They should be able to signpost to non-statutory services. • There should be more follow-up and longer-term support offered. Too many quick fixes are offered that leave people isolated and still unwell.

Let’s Talk! – Question and Answer with the Speakers (1) Key issues raised for response and discussion included: Reduced funding ● Mental health needs are increasing at the same time that there are cuts to community and statutory services. ● In times of reduced funding, mental health services are the first to be cut. ● When funding is available to address issues for particular groups, Commissioners tend to award it to bigger organisations – e. g. NHS, and then it doesn’t necessarily benefit the identified groups. ● Smaller organisations do not have the time or expertise to repeatedly bid for tenders. ● Clinicians, community groups and service users need to be able to work together to find solutions to funding gaps. ● Sustainability is a real worry in a time of reduced funding. ● Waiting lists for statutory services are getting longer and community organisations are cutting back on some of the social inclusion groups they offered that could provide on-going support to people who are struggling.

Let’s Talk! – Question and Answer with the Speakers (2) Diversity and person-centred approaches ● Integration right from early stages would help, there does not need to be a different route for people – just better individualisation. ● It is difficult to identify different communities’ needs when referral systems are rigid and do not deviate from the norm. ● Clinicians need to combine treatment and care with patients’ expertise of themselves. ● The emphasis should be on the person, it might be acknowledging culture/ religion/faith – or nothing to do with that. ● Services need to have welcoming ‘open door’ approaches. Third sector organisations are trying to offer something better but this is not replicated in statutory services. ● There needs to be more outreach and co-location. Islington Community Wellbeing Development Service does outreach to barbers, hair salons, shops etc. to talk about mental wellbeing and how to access help. Statutory services need to be based in familiar places for people, so that individuals feel more comfortable when they use them.

Let’s Talk! – Question and Answer with the Speakers (3) Community values and beliefs affecting mental wellbeing ● Honour based violence is an issue in some communities. Families/parents feel shame and this leads to violence and further mental health difficulties. There are few referrals from mental health services to specialist honour based violence organisations which suggests a lack of awareness of the issues amongst staff. ● As a society we are not ready to accept problems with mental health – and this is greater in some communities. ● How can we support mothers on their own who are cut off within their communities? There needs to be a community approach but what is the answer if there are cuts to both community and statutory services? ● There needs to be awareness raising and signposting – but this needs to be done with knowledge of different community values or it could create dangerous situations for those at risk of honour based violence.

Conclusion (slide 1) There were four themes that ran throughout the Community Conversation: Impact of NHS and local authority cuts on mental health services for BMER communities cannot be ignored: ● ● Statutory services are operating long waiting lists - e. g. 12 months for psychotherapy. Voluntary groups are under additional pressure to fill gaps, whilst also managing on smaller budgets. Community run groups for vulnerable people are disappearing and this is impacting on people’s wellbeing. Longer-term support is disappearing as treatment lengths are reduced and community groups no longer able to offer some groups or individual support. Diversity in staff is important: ● ● ● GP and other primary care services need more support to gain knowledge and expertise in mental health problems and how they may be experienced by people from BMER communities; and to increase their knowledge of community organisations that offer complementary treatments or ongoing support through social connections or group participation. Talking therapies need to be more widely offered and available in community languages. A more diverse workforce would increase the likelihood that there would be someone who had an understanding of an individual’s culture or language, that could help people feel more comfortable and able to accept help.

Conclusion (slide 2) Clinical and personal experience perspectives are important for improving practice for BMER communities: ● ● Person centred approaches; cultural competency; equality and diversity need to be fully understood and implemented. Assumptions about culture should not override a focus on personal values and beliefs. Politically driven initiatives need to be based on learning from experience and not just reactive to problems. There is not enough data on the quality of services and impact on mental wellbeing for people from BMER communities collected to fully understand the difficulties that people experience or to provide learning to support improvements. Co-production and increased participation is essential to bring about lasting change: ● ● ● To improve access to support by learning from experience. To provide increased access to help for individuals and communities. To remove stigma and fear of Mental Health conditions within communities.

Recommendations 1 These Recommendations are offered as possible actions to take to utilise the experiences, knowledge and ideas shared during the Community Conversation. Addressing the impact of NHS and local authority cuts on mental health services for BMER communities cannot be ignored: ● ● There needs to be a conscious decision to direct funds towards maintaining and increasing services for BMER communities who are experiencing difficulties with their mental wellbeing and struggling to access support. Smaller community and refugee organisations need to be consulted on mental health needs within the borough and provided with support to form partnerships and bid for tenders. Change needs more than political direction: ● Services and treatment routes for people from BMER communities need to be routinely evaluated and the findings used to make improvements. It often misses the clinical and personal experience perspectives which means that development of person-centred approaches; cultural competency; equality and diversity tends to be reactive rather than proactive – and not properly evaluated. Assumptions about culture should not override a focus on the personal.

Recommendations 2 Increasing diversity in staff: ● ● Co-locate community development services and other community group support in primary care settings to provide support for individuals and primary care staff in where to access non-statutory support. Talking therapies need to be offered in community languages Develop and support training routes for people from different communities within Islington to deliver psychological support. Create dual placements so that clinicians can work in statutory services and community organisations to share expertise and learn from each other. Co-production and increased participation to bring about lasting change: ● ● ● Projects focused on co-production within Camden and Islington need support to be developed, implemented and evaluated so that they can be embedded within mainstream practice. Develop peer and expert produced training that can be delivered on site and directly to teams in a way that fits with their normal working pattern – e. g. short courses that can be delivered to GPs during practice meetings. Develop - through co-production: improved assessment and treatment pathways that are culturally sensitive in offering a range of treatments appropriate to each person’s Mental Health condition and wider social, familial and religious situation.

Community Conversation December 2015 Evaluation and Feedback Total number of attendees was 29. 14 evaluation forms were returned. Out of the 14 forms received, 11 were from female attendees ; 2 were from males; 1 did not specify. Ethnicity specified on evaluation forms included White British, Black African, Indian, and Kurdish. Age on evaluation forms varied from 18 to 60: 2 from Ages 18 to 30, 2 from Ages 31 to 45, 5 from Ages 46 to 60 and 2 from Ages 61 to 75. Sexual Orientation noted on the majority of evaluation forms was heterosexual and two indicated that they would prefer not to say. The main comments from the evaluation forms were: • • Very relevant issue. BMER cultural competency and mental health is a topic that is absolutely essential for our service users and for the wellbeing of our users It would be good to have GPs and clinicians from the NHS Islington authorities present to hear what ALL of us have to say about them.