The Greenwich Memory Service Black and Minority Ethnic (BME) Engagement Project

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Alicia Caldwell
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1 The Greenwich Memory Service Black and Minority Ethnic (BME) Engagement Project

2 Speakers Azaad Magho Memory Service Team Manager Jasmine Martinez Assistant Clinical Psychologist Dr Darshi Kumareswaran Highly Specialist Clinical Psychologist

Contents Azaad Jasmine Darshi Introduction to the Greenwich Memory Service Issues in the referral pathway BME Research project development

3 Contents Azaad Jasmine Darshi Introduction to the Greenwich Memory Service Issues in the referral pathway BME Research project development Research methods Data Collection Thematic Analysis Survey results Model development Intervention development Future Intervention Questions

4 Introduction to the Greenwich Memory Service Referrals: Predominantly via GP s. Sometimes receive referrals initiated by Psychiatric Liaison and Neurorehabilitation teams. Ages 18+. Process: Seen for an initial assessment by a nurse, nurse practitioner, psychiatrist, or OT. -Biological tests conducted e.g. Bloods, MRI/CT -Refer to Neuropsychology or OT for further assessment Seen at Diagnostic appointment for feedback Depending on case offered: Drug treatment, Cognitive Stimulation Therapy, Carers Support Group, Living well with Dementia Support Group, Occupational therapy, Psychological Therapy Discharged back to GP or other Oxleas NHS service if appropriate.

MSNAP Audit MSNAP recommends conducting frequent audits to ensure that all ethnicities within the boroughs are able to access our services equally.

5 MSNAP Audit MSNAP recommends conducting frequent audits to ensure that all ethnicities within the boroughs are able to access our services equally. In 2014 a Clinical Psychologist carried out an audit of the Black, Asian and minority ethnic (BAME) groups accessing the Greenwich memory service. This compared population data from the 2011 census with the percentage of people in each ethnic group who accessed the memory service.

6 Referral rate compared to census Greenwich % (n) Census REFERRALS (n) 460 White: British/ (n) 63.7 (293) 52.3 White: Irish (%) 1.7 (8) 1.7 White: Other (%) 6.3 (28) 8.3 White: Gypsy/ Irish Traveller (%) 0 (0) 0.2 Black or Black British: African (%) 1.1 (5) 13.8 Black or Black British: Caribbean (%) 2.2 (10) 3.2 Black or Black British: Other (%) 1.1 (5) 2.1 Asian: Indian (%) 1.3 (6) 3.1 Asian: Pakistani (%) 0.2 (1) 1.0 Asian: Chinese (%) 1.1 (5) 2.0 Asian: Bangladeshi (%) 0 (0) 0.6 Asian: Other (%) 1.5 (7) 5.0 Mixed: white and black Caribbean/ African (%) 0.4 (2) 2.7 Mixed: white and Asian (%) 0 (0) 0 Mixed: Other (%) 0.4 (2) 1.3 Black British 0 (0) Asian or Asian British (any other background) 0.9 (4) Not Known (Unable to Request) 7.4 (34) Not Known (Not Requested) 4.6 (21) Not Stated (Client Unable to choose) 0.2 (1) Not Stated (Not Requested) 6.7 (31) Number of patients from different ethnic groups referred to Greenwich memory service between April 2013 and March 2014, in relation to the 2011 census. NB. Bold indicates groups in which % referrals was lower when compared with the population.

BME Research Project Project 6 months funding Understand the reason for low referral rates from BME communities Develop interventions to increase such referrals Method Liaison with BME

7 BME Research Project Project 6 months funding Understand the reason for low referral rates from BME communities Develop interventions to increase such referrals Method Liaison with BME organizations, charities and communities Conducted semi-structured interviews in the community Developed and collected responses from an online GP questionnaire and Iinterpreter questionnaire

8 Research Methods 24 GP questionnaire responses (14% response rate from 178) 11 Interpreter questionnaire responses 55 Semi-structured interviews in the community - convenience sampling

9 GP Survey Most seen to least seen (for memory problems): Asian Indian, Black African, Bangladeshi, Pakistani, Nepalese, Black British, Chinese, White Irish, Black Caribbean, Irish Traveller Directly corresponds with the Greenwich Memory Service s most seen to least seen serviceusers.

GP Survey Stigma 86% thought stigma prevents BME communities telling GPs about memory problems 52% thought stigma prevents BME communities coming to GP.

10 GP Survey Stigma 86% thought stigma prevents BME communities telling GPs about memory problems 52% thought stigma prevents BME communities coming to GP. 24% thought stigma prevents BME communities accepting referral. Awareness/Beliefs 82% thought BME communities have limited awareness of Dementia and services 58% thought BME communities believe Dementia is normal ageing Assessment 76% felt confident assessing for Dementia in BME communities 52% felt screening tools appropriate English Literacy 58% thought language barrier prevents assessment

11 GP Survey: Their ideas 1. Consider individual cultural needs all unique 2. Proactive Screening 3. Advertising campaign 4. BME Dementia Advocates 5. Better awareness of assessment tools & services available (for GPs) 6. Easier Memory Service Access 7. Address language barrier

12 Interpreter Survey 52% believe Dementia is normal ageing 45% Dementia is a family issue 42% -keep Dementia in the family to avoid shame 45% - negative stigma prevents going to the GP 55% language barrier not affecting detection 54% English reading and writing skills prevent assessment of Dementia 73% believe screening tools are culturally appropriate

13 Interpreter Survey: Their Ideas 1) In-person interpreters (not telephone) 2) Better awareness of dementia 3) Reduce stigma

14 Who did we ask? Ethnic Groups (15) Caribbean social forum Vietnamese Women s Group Nepalese Gardening Club Chinese Women s Association Greenwich Migrant Hub Irish Traveller Movement Irish Community Services Community Empowerment and Support Initiative (CESI- Nepalese) Tamil carers and elders club Indian Cultural Centre Somali Teaching Group Asian Senior Citizens Club SSAFA- Ghurkha community GAISO- Ghurkha community Culture Dementia UK Other Groups (8) Language Connect Greenwich Action for Voluntary Services (GAVS) BME network Health watch UK Pensions Forum Royal Borough of Greenwich Council RBG Dementia Action Group (DAG) Oxleas- Own clients interested in project. Oxleas ResearchNet Religious Groups (4) Gurdwara Sahib- Sikh temple New Wine Church Greenwich Islamic Centre Woolwich Central Baptist Church Social Groups (3) Age UK- Men in Sheds Woolwich Common Community Centre Greenwich Inclusion Project (GriP)

15 Demographic Results AGE RANGE: MEAN AGE: 65.3 Black African T =11 M- 3 F- 8 Age. R: Asian. Pakistani T=5 M-2 F-3 Age. R: Irish Traveller T=1 F-1 Black British Total= 1 Male-1 Black Caribbean T= 7 M- 2 F-5 Age. R: Somali T=2 M- 2 Age. R: Asian. Chinese T=4 M-1 F-3 Age. R: Asian Bangladeshi T=1 F-1 Asian. Vietnamese T= 1 F-1 Mixed T=1 F-1 Other T=2 F-2 Age. R: Asian. Indian T= 11 M-1 F10 Age. R: Nepalese T=5 M-3 F-2 Age. R: Other Asian T= 3 M-2 F-1 Age. R: 47-86

16 Thematic analysis on semi-structured interviews Two overarching themes: Service Awareness Cultural Differences in Perception

17 Service Awareness Cultural Differences in Perception Practical Barriers Gatekeeper Barriers Cause of Dementia Fear and Respect

18 Service Awareness Practical Barriers Gatekeeper Barriers Language/ Interpreters Lack of awareness of interpreter services Barriers to accessing interpreters Unable to express extent of problems in English Travel May not use public transport or travel out of familiar environment Money Think they need to pay for interpreters Think they need to pay for GP Not registered with GP Not referred on from GP to memory service If a family are interpreting they may not want to disclose memory difficulties due to stigma around dementia.

19 Cultural Differences in Perception Cultural Differences in Perception Cause of Dementia Contradictory views about dementia Normal part of aging Personal characteristics Loneliness Selfishness Bad person Mental Health Seen as a mental health illness Blame and Shame Ashamed as brought dementia on themselves Will be blamed by services

20 Cultural Differences in Perception Fear and Respect Fear of dementia and loss of respect Disrespected and Undervalued in British society Services are prying so are apprehensive Taking advantage of them (Perception of Oxleas in community) Funding cuts Brexit Safe in own culture, unsafe in British" Engagement Avoid all state services Only utilise in crisis Stick to cultural groups for help as they are safer. Generational differences 1 st Generation Afraid of suffering alone- don t seek help Don t want to be a burden. 2 nd Generation Failure if can t look after family, but can t manage. Tension between cultural values and living independently Stigma People think your family are tarred, poor gene pool Seen as letting the family down Dementia in other languages is translated as: Mad Crazy Stupid

Intervention ideas Trusted Leaders Offer training every quarter Leaders to encourage referrals

different BME groups/settings Flags of countries in waiting room Leaflets/posters in own

Develop training package Publication (JDC) Present @ National Memory Services Forum 2017

21 Intervention ideas Trusted Leaders Offer training every quarter Leaders to encourage referrals Drop-in clinics with Trusted Leaders Link with GPs through health checks Presentations in different BME groups/settings Flags of countries in waiting room Leaflets/posters in own language about Memory Service in community venues. Develop training package Publication (JDC) National Memory Services Forum 2017 Dementia Pathway Audit in hospital to include BME Outcome measures: Monitor referral rates Measure change in knowledge and beliefs about dementia with Trusted Leaders

Interventions Completed so far Presentations on dementia & our service Literature sent to places of worship/community halls Attended Chinese Dementia conference Project information collected used for

22 Interventions Completed so far Presentations on dementia & our service Literature sent to places of worship/community halls Attended Chinese Dementia conference Project information collected used for Oxleas dementia App List of BME Greenwich contacts utilised for social inclusion Shared learning with trust e.g. senior management groups Identified community Trusted Leaders 12 Top Tips for Oxleas Intranet Translation document created and used by Trust

23 Translation Document

24 Interviews at world mental health day

Trusted Leaders- Rationale Both Oxleas project and the Alzheimer s Society s

out plan to involve BME volunteers as much as possible.

memory service input (dependent on group dynamics).

25 Trusted Leaders- Rationale Both Oxleas project and the Alzheimer s Society s Connecting Communities Project s identified a need for a clear and well-thought out plan to involve BME volunteers as much as possible. Trusted Leaders involves this: 1) Strong emphasis on BME involvement and some memory service input (dependent on group dynamics). 2) Continues relationship created between services and BME communities. 3) Offers space for continued knowledge sharing between services & groups.

Trusted Leaders Package: Guiding Principles Two Oxleas staff members present for each training session. Group members represent their community group.

26 Trusted Leaders Package: Guiding Principles Two Oxleas staff members present for each training session. Group members represent their community group. Each session will involve training on dementia services, followed by discussion. Led by Oxleas clinicians. Learn even more about barriers for BME use of services. Develop, plan and execute appropriate interventions to referrals e.g. Posters for GP surgeries; drop in clinic. Open space for leaders to inform us of their issues and feedback.

27 Trusted Leaders Package Where -Community venues -This can include BME community group centres or public centres/areas. Why? Research showed: -Travel can be a barrier. -NHS represents Gov/State they fear. -They may feel more in control in their familiar environment. When -Quarterly -Initial date decided by facilitators, but future dates to be mutually agreed. Why? -In order to have realistic expectations for commitment. -Allows sufficient time for planning & preparation. -Foster equal ownership of the process How -Group lead e.g. set agenda, targets. -Oxleas Volunteers e.g. DBS check, online application (completion supported by voluntary services), lanyard, access to training. -Facilitation of meetings shared between members/staff. -Oxleas can cover transport costs and provide subsistence of 5 per day of volunteering. -Volunteers must live in or near Royal Borough of Greenwich.

28 Trusted Leaders Package: First Step Initial Focus Group Session: 5 most prominent/engaging BME community leads attend Introduction to dementia and memory service Group-think about most meaningful content/delivery of training sessions Collaborative development of Trusted Leader role description Encourage they feedback to community groups and keep note of questions/issues we might be able to help with Initial pre-measures to obtain baseline of understanding/attitudes towards dementia (e.g. video/audio recordings, quiz) Information Session: Focus group attend session (held every 6 weeks) / Potentially run a stall at the session Second Focus Group Session: They can ask any questions that have arisen for them since the initial focus group session. They will be encouraged to provide feedback about how the opinions/attitudes/challenges they have faced in trying to engage their communities in discussions about dementia integrate into training package.

Some Considerations/Issues Language barrier- Even from recruitment as forms may be in English. Volunteers must have basic understanding of English, may exclude some individuals.

29 Some Considerations/Issues Language barrier- Even from recruitment as forms may be in English. Volunteers must have basic understanding of English, may exclude some individuals. May be challenging to initiate/maintain trust of community groups- may take time. Registration as a volunteer is a lengthy process- this may be a deterrent. Bimonthly contact this level of frequency may lead to slow momentum.

Trusted Leaders- Potential Benefits/Goals Empower BME Communities Reduce impact of Language barriers on relationship between memory service and the BME community groups.

30 Trusted Leaders- Potential Benefits/Goals Empower BME Communities Reduce impact of Language barriers on relationship between memory service and the BME community groups. Training/information will be provided by Oxleas specialist clinicians. Oxleas can learn from BME groups about subjects that matter to BME groups. Can collaboratively develop interventions with community groups. Recurrent contact between services and groups may aid development of healthy relationship between the two. Apply to other teams in future (e.g. CMHT)

31 Acknowledgements Dr Naomi Wynne-Morgan, Clinical Psychologist, Oxleas NHS Foundation Trust Azaad Magho, Memory Service Team Manager, Oxleas NHS Foundation Trust Elaine Newman, Community Manager- Greenwich, Oxleas NHS Foundation Trust The Integrated working and Better Care Fund (BCF) Thank you to all the individuals who gave their time and honest views.

32 Any Questions?

Standard Reporting Template

Appendix Seven Annual Report Template Standard Reporting Template London Region [North Central & East/North West/South London] Area Team 2017/2018 Patient Participation Enhanced Service Reporting Template