Black, Minority & Ethnic Minority Communities

and

Mental Health

Stakeholder Engagement ReportSeptember 2014

“When someone shows you who they are, believe them the first time.”

Maya Angelou

1 | P a g e

Background

NHS Liverpool CCG is reviewing how we help people from BME communities to

reduce barriers to accessing support with mental health issues. This is part of

implementing our Primary Care Mental Health Strategy, which will integrate a range

of clinical and non-clinical approaches to support people with common mental health

problems like anxiety and depression. Work has been undertaken over the years to

address the needs of BME community members, with many examples of good

practice from our current service providers. The purpose of the stakeholder exercise

was to engage stakeholders in a discussion of which barriers community members

still face and what kind of support helps them to overcome these barriers.

What did we know already?

A great deal of research and engagement activity has taken place in recent years to

examine the issues. A full scale literature review is not within the scope of the this

document, but it is important to note that an extensive amount of studies into the

experiences and mental health outcomes of people from a wide range of BME

communities, including the “less visible” such as gypsies, travellers and Roma

communities, people migrating from Eastern Europe as well as asylum seekers and

refugees have been carried out. Although different communities experience

complexity that is particular to them, some high level messages have been distilled

from this research, corroborating strongly with data indicating that people from BME

communities are:

more likely to be diagnosed with mental health problems

more likely to be diagnosed and admitted to hospital  

more likely to experience a poor outcome from treatment 

more likely to disengage from mainstream mental health services, leading to

social exclusion and a deterioration in their mental health.

It is likely that mental health problems go unreported and untreated because people

in some ethnic minority groups are reluctant to engage with mainstream health

2 | P a g e

services. It is also likely that mental health problems are over-diagnosed in people

whose first language is not English.1

Locally the needs of BME community have been raised with health and social care

providers and planners over a number of years. A peer-led research study carried

out in 20092 studied the experiences of three different communities (Chinese,

Asylum Seekers and Refugees and Irish & Irish Travellers) and found that although

each community had issues that were particular to their own cultural identities, there

were overarching issues of concern that may affect any members of BME

communities. These included lack of cultural awareness in services, lack of

information about what services were available, problems of communication arising

from language barriers and inflexibility of services when responding to an individual

person’s needs within the context of their culture and their social circumstances.

At a more recent large scale engagement workshop with people from BME

communities, to discuss primary mental health care, (April 2013)3 participants

stressed the importance of dealing with social injustice and discrimination, and how

this needs to be integral to delivery of excellent health care:

Racism/discrimination: impacts on all aspects of life, particularly where you

live, whether you get a job, how public services respond to your needs

Poverty: low income and lack of status impacts on self-esteem

Language/communication: it can be difficult to make yourself understood

increasing the sense of isolation and making it more problematic to access

support

Cultural disconnection: assumptions about culture, misunderstanding, can

contribute to feelings of loneliness and isolation

Effect of trauma: many people who arrive here are living with the effects of

extreme trauma such as war, torture and sexual violence. Taboos attached to

1 http://www.mentalhealth.org.uk/help-information/mental-health-a-z/B/BME-communities/ 2 CSIP (2009) COMMUNITY MENTAL HEALTH RESEARCH REPORT ON Inequalities and Cultural Needs in Mental Health Service Provision for Black and Minority Ethnic Communities in Liverpool3 BASHIR, R & QASSIM A (April 2013) Celebrating Black Minority Ethnic (BME) World Mental Health Day: What we Know? (Evaluation Report)

3 | P a g e

these experiences can prevent people from disclosing their experiences in

order to access appropriate support

Gender Roles: for women this can leave them isolated in the home, can

involve the experience of domestic violence, forced marriage or

abandonment. For men they may be coping with the disruption of traditional

roles in their community, or struggling across generations with different

social/cultural norms

BME communities face a double jeopardy in respect of maintaining their

mental health, on the one hand facing social isolation and exclusion, and on

the other hand facing barriers to accessing services based on cultural

inappropriateness, geographical distance and lack of community credibility

This summer, our Community Development Worker team carried out some research

into BME and Recovery (insert ref). This was based on focus groups with a variety

of different communities to find out their various understandings of the idea of

“recovery” in mental health. The results indicated the impact that bespoke support

for these communities had on their levels of mental health awareness and their

readiness to seek and accept support.

• More than 90% of the respondents in a recent survey were able to

identify common mental health problems such as depression, bipolar,

schizophrenia, anxiety

• They engaged in discussions around symptoms of each condition

intelligently

• This was not the case 7 years ago when CDW role started

• Less than 10% would rather not separate the illness from symptoms or

triggers

• They chose to classify job loss, isolation, money problems, low self

esteem as mental health problems

Local efforts to support BME communities have been considerable, including a wide

range of community involvement interventions, issue-based advocacy for individual

community members affected by mental ill-health, and some face-to-face work to

support signposting and access to other services. These have been successful

4 | P a g e

within the framework and resources available to them. However, community

members are still too often come up against the same difficulties, some of which are

listed below.

Range of different communities and backgrounds is varied and constantly

changing and evolving

Mental health label seen as stigmatising/taboo

Services could be more culturally responsive

Recovery approaches more accessible than purely medical model

Communities need to be supported as a whole with information about

services in appropriate language and formats

There are common issues affecting all communities (social exclusion,

language barriers, racism)

One size doesn’t fit all – individualised, personal approaches are needed

Access to psychological therapy can be problematic

Scope

The purpose of the engagement is to inform the future development of the CCG’s

BME mental health services. The engagement acknowledges the contribution of

current providers and the quality of their work to-date. Feedback from stakeholders

will be related directly to the formulation of the service objectives and outcome

measures of a new service specification, as part of a competitive tender process to

procure the new service.

A multi-stakeholder steering group was set up, including community representatives

as well as CCG officers and is chaired by the engagement lead from the CCG

governing body. The group coordinated and managed a variety of engagement

interventions, including:

a series of facilitated conversations with community groups at a local level

about the CCG’s plans, and in particular

o Irish Community Care Merseyside Service User (8 community

members)

5 | P a g e

o Chinese Wellbeing Service Users (25 community members)

o Asylum Seekers and Refugees Representatives (approx. 20

attendees including 8 community members)

o Mary Seacole House Service Users (18 community members)

a higher profile engagement event to which all stakeholders including service

users, community members and organisational representatives were invited,

resulting in 85 attendees including community members, elected

representatives, commissioners, service providers and voluntary

organisations; (85 participants in total) a questionnaire survey comprising key, open questions inviting a free text

response to enable those who prefer an online contribution to share their

views resulted in 52 responses, mainly from mental health professionals and

community representatives.

Feedback from all forms of engagement has been combined to enable a thematic

analysis. The steering group has examined the themes against raw data from each

of the strands of the process to mitigate against any bias in interpretation. The

report will be circulated to participants to increase transparency. The findings of the

report will inform the service specification to be included in the forthcoming tender.

Findings

The enthusiastic response to the invitation to take part in the process is an indicator

of the importance of the issues under discussion. Although the process was not able

to reach out to every member of the wide range of communities that make up

Liverpool’s BME population, the level of common issues across all those consulted is

striking, as is the degree to which this correlates with findings from national and local

research and previous local engagement exercises.

Comments from across the various engagement exercises were combined into a

single document and cut and paste into thematic categories suggested by the

6 | P a g e

steering group. These were then tested and revised by steering group members as

a way of validating the interpretation of the findings.

Although the focus of the engagement was to inform the development of a new

service specification, comments from participants were much wider than the scope of

these services. They have been divided into 4 categories:

1. Barriers to accessing support

2. How communities express their needs

3. Issues with “the system”

4. Ideas to overcome barriers.

1) Barriers to accessing supportFeedback indicates that members of BME communities continue to experience

barriers to accessing support for their mental health in a number of different

areas

a) PhysicalThis can relate to the geographical location of the service, or the service users

needing additional needs such as transport and mobility aids in order to attend

the service.

“More responsive services in community settings, places where people are used to, feel safe and sense of belonging”

“ Early interventions located in the communities”

b) Language

Many comments reflected on the lack of availability of quality interpretation.

Telephone interpretation services were considered not ideal by some

participants. It was also commented that concepts such as mental health and

distress do not translate straightforwardly across languages and cultures and that

this can give rise to misunderstanding. Literacy as well as language is a concern.

7 | P a g e

“Where English is not first language; consideration of when/where and how to use interpretation services”

“No language to describe-concepts/jargon/lost in translation

c) AttitudeSome comments saw staff attitudes as a barrier to accessing support, including

some that described experiences of different treatment that they ascribed to

racism. Some had also experienced negative attitudes from health service staff

in respect of their mental health problems.

“Time-spending time to listen so people are able to explore what they mean. They have time to formulate what they feel”

“Institutional racism within mental health service smashing the cycle”

d) Information gap

There were wide ranging comments on the availability of reliable up to date

information about services being a barrier to accessing support. It was felt that

information is not available in appropriate languages and formats. Conversely,

mental health services were not necessarily informed about the availability of

community organisations and groups, and the ways in which they could support

community members.

“Need more signposting/facilitation of access/ liaison between services and communities”

“To listen, not judge, to reassure, to have the relevant and up to date information

8 | P a g e

e) Cultural

Repeated comments cited the limited cultural sensitivity and responsiveness of

mental health services as a significant barrier to access. There was speculation

that not enough staff training time was invested in cultural awareness. Services

were too often based on medical model, which was seen as western and did not

include the social and cultural awareness needed to be able to respond to BME

community members’ needs.

“Speaking with culturally specific care organisations who understand mental health issues from a cultural perspective which is key to determining treatment and care pathway”

f) “The System”

For many contributors one of the chief barriers to accessing services were the

structures, processes and procedures that support them. Sometimes a range of

different public services are involved but don’t necessarily join up. Other included

lengthy waiting times for some services, “one-size fits all” approaches, often

based on a medical/illness model of distress. Referral routes can be complex

and off-put. Services seem remote from the lived experience of community

members. Lack of time for one-to-one conversations and to develop trusted

relationships was also cited. Lack of childcare was also experienced as an

obstacle. Again, refugee and asylum seekers found that there are manifold

issues acting as barriers to support due to the processes of the immigration

system. It was felt by many that support was only available when matters

reached crisis level, and that services do not reach out to communities early

enough to work in a preventative way.

“There is not enough representation from BME community / staff from BME backgrounds in services who would better understand the issues faced by different ethnicities and this creates a barrier to accessing services”

9 | P a g e

“Get people (service providers out and into the community, have identifiable and trusted individuals who have the language skills and community background to run these sessions……….

“We need structure to put people under the right care”

g) Stigma

The stigma associated with mental health was felt to act as a barrier by

preventing people from disclosing problems and accessing help. Mention was

made of the discrimination faced by people who experience mental distress,

particularly in the area of employment. It was observed that some families seek

to contain issues and to cope on their own which can result in help only being

accessed in emergency or, in one instance, ending in tragic loss of life.

“Cultural /social norms: stigma is key- perceptions of social services judgements/medical staff and negative consequences”

h) Social/Economic issues

For many they were unable to access ordinary activities to combat loneliness and

isolation because the cost of living prevented them from enjoying leisure

activities. For others the introduction of charging for certain services had reduced

the likelihood of attending resulting in a vicious circle of having to prioritise the

every costs of living over money spent on health and social care. Other

participants remarked upon the impact of austerity on the general availability of

services at all levels, from locally organised community groups, to voluntary

sector mental health services and specialised, statutory care such as hospital

beds.

10 | P a g e

2) Needs

Some of the needs that were articulated through the engagement process are

outlined below:

Levels of need can vary, so services need to be flexible in response

Loneliness is a big issue for many people who find themselves isolated from

community, family and friends

Women can experience forms of mental distress that are particular them (eg

PND, menopause), but also have particular social roles that impact on their

mental health (eg as mothers and home-keepers) as well as experiences of

threat, coercion, exploitation and violence that impact on the mental health of

themselves and their families

Needs could be assessed and addressed earlier so that people can find help

before it’s an emergency

There needs to be a thorough and holistic assessment of needs that

acknowledges the interaction between psychological, social, cultural, spiritual

and economic factors, as well the symptomology of mental illness.

Needs assessment should be person-centred and take into account individual

need

People who are asylum seekers and refugees have specific needs arising

from their particular circumstances

self-medication / solace in alcohol / drugs and issue of dual diagnosis

“ Dread the night time and waking up in the morning”

“Employment has real benefit”

3) Issues for consideration by health and social care service system

While the effectiveness and importance of community development and

advocacy was emphatically supported, there was a clear message that providers

of mental health organisations need to own responsibility for the way the support

11 | P a g e

that they provide reaches out to communities, and there were a range of ideas

about how improvements could be made.

One recurring issue was the flexibility of services. It was felt that if they were

more personalised, took a broader, holistic approach and offered a wider range of

choices of support that they would be more accessible to people from BME

communities.

Communication was another issue. More time to talk and be listened to, and the

opportunity to discuss issues that relate to individuals and their communities and

social circumstances would make it more likely that they receive support that is

appropriate to their needs and take into account their culture and background.

Partnership working – building up understanding of service users and their

communities over time and including service users and their families in the way

that service users are developed, designed, monitored and evaluate would boost

confidence in their capacity to respond to the fluctuating needs of community

members.

One participant offered the idea of a bespoke, multicultural service that could

bring the strands of community empowerment, access to services and support for

BME community members together into one service.

4) Ideas for community-based support for BME community members

a) Advocacy

“Advocacy is very important - both by friends and commuity leaders and by health and social care workers - advocates need to be clear of their role and not take power and confidence away from the individual who needs help”

12 | P a g e

There was strong acknowledgement of the capacity for individual advocacy to

support people from BME communities to get the most out of the system. It was

considered that advocacy can be a powerful in empowering community members

through increased knowledge of their rights; increased knowledge of the support

that is on offer; providing additional support to access services; facilitating face

to face content between individuals and organisations; challenging assumptions

made by organisations and practitioners based on race and culture; articulating

the need for the individual within their wider social and cultural context.

b) Community engagement

“Expecting vulnerable people to engage in consultations doesn't work. ongoing long-term engagement with communities and specialist providers is the only way to engage people who may be very much outside of the mainstream (people seeking asylum, people with learning disabilities, survivors of trauma, homeless people, etc)”

There was strong recognition of the need to be assertive in reaching out to

communities to enable their voice to the heard and recognised. It was the duty of

service providers to connect to the communities they serve, which will require

them to be culturally sensitive. It was acknowledged, however, that this can be

enabled by having paid workers to maintain links within and between

communities, acting as trusted colleagues in long term working relationships with

the communities. A wide variety of settings could provide opportunities to

connect. These might be located in health care services within communities, or

within buildings and organisations owned by the community. Methods of

communication may be equally varied. Some that were mentioned were

internet/social media, posters in GP surgeries and health centres, local radio

advertisement and more. Face to face contact was regarded as crucially

important, however, and the need for services to reach out to communities was

frequently re-emphasised.

13 | P a g e

c) Community capacity building

“Having mechanisms (people) and support to challenge poor service/systems – having a service which has a role in supporting groups/people/networks to find a voice/challenge etc.”

Many of the comments alluded to provide community members with space and

support to connect with one another and identify issues of priority for themselves

and their communities. Peer support was named as one example of this, but also

friendship circles and the idea of helping one another out. Developing leadership

in the guise of paid community workers, community leaders and possibly training

members to act as mental health champions were all mentioned. Linking

different groups with one another and having inter-community, inter-cultural

events was another idea. Supporting women to organise and support one

another with their own, gendered priorities was mentioned as being important,

which would require safe settings and women only space, particularly for women

who are living with the effects of violence. Again, long term, trusted relationships

were mentioned as a great enabler in this process.

d) Community participation

“Reaching into the community will only occur if we work together in a non stigmaized, coordinated approach that allows for all services and all practitioners to integrate the responsibility collectively.”

There was strong support for community members and services working together

to address issues and priorities for development jointly. This can also be an

opportunity to challenge the stigma associated with mental health in community

settings as well as racism and assumptions associated with culture and race in

health and social care settings. It was felt that increased representation of BME

communities in the staffing complement would facilitate greater cultural

awareness amongst all staff in service settings. Use should be made of the wide

variety of techniques to support participation in practice, including spoken,

pictorial and written communication. A flexible approach would enable people to

14 | P a g e

choose which engagement opportunities suit them best. Community members

should be provided with high quality information in a language and format that

suits them best.

Community participation should feed into an ongoing dialogue between services

and communities in order to support improvement. BME communities should be

represented in strategic groups such as Healthwatch and the Health And

Wellbeing Board, as well as decision making environments such as boards of

directors. Strong links with “community specialist” organisations such as Mary

Seacole House, Asylum Link and others were held to be important.

Refugees and asylum seekers were again singled out as facing distinct barriers

to participating in community live, often due to their lack of entitlement to support

associated with their immigration status. Participative working is another way of

raising awareness of their particular needs amongst healthcare staff.

e) Community learning

“Education, information delivered to a community specific to their needs and culture. Communication is a key factor. ….. Offering opportunity to explore options and information/ education on things.”

Employment. Communities should be supported to identify joint issues so that

learning can be focussed on their own community priorities. Community

members can work collectively to exchange knowledge and support one in other

in finding solutions to problems. Peer support groups were named as one way of

combining community learning with mutual support with mental health issues.

The need for reliable information about the experience of mental ill-health and the

support available to community members was repeatedly voiced. Word of mouth

was considered an important way of sharing information. Good stories can

encourage access to services. Sharing experiences can reduce the taboo

associated with mental distress, and support the promotion of mental wellbeing in

15 | P a g e

community settings. Again, having a named and trusted contact to facilitate

these opportunities was considered essential. Access to reliable information is

available through the Wellbeing Liverpool directory. Community development

workers could act as a community hub for mental wellbeing, supporting access to

information on debt management, family support and specific mental health

services. Community learning should take place in a space that is trusted by

community members and should take into account variations in language and

cultural norms.

f) Supporting organisational/workforce development

“Speaking with culturally specific care organisations who understand mental health issues from a cultural perspective which is key to determining treatment & care pathway”

It is necessary to look at the wider system of service providers including health

and social care, police force, housing services and the immigration system. It is

the responsibility of services to reach out to communities. This could be

achieved by greater liaison with community organisations, but also by embedding

service provision into community settings, and by increasing the representation of

BME communities in the workforce itself. This would be one way of increasing

cultural awareness within organisations and systems.

The role of CDW is linking NHS and other providers to communities was valued.

This could be by making information about services within community settings

and by facilitating cultural awareness workshops with staff in public services. The

need to raise the cultural sensitivity of services was repeatedly referred to, as

was the need for services to raise issues concerning mental health within

communities. Awareness also needs to be raised of the particular barriers faced

by members of BME communities and how this results in health inequalities. The

value of having dedicated, trusted workers to make connections was highlighted.

Care provided needs to extend beyond diagnosis and medication and to take a

more holistic approaches which can take into account cultural, social, economic

16 | P a g e

and spiritual factors. Services must also be able to respond on an individual level

with person centred support within the context of culture and society.

Language/interpretation requirements need to be address.

Services need to be delivered with warmth in order to maximise access, with a

personal, welcoming approach.

Services need to take a family. The loss of beacon services like Building

Bridges, the Afro-Caribbean Centre, Access and the Haven is keenly felt by

professionals and community members alike. There is a fear that the advances

made by Princes Park Health Centre have not been capitalised on.

Again the role of the Community Development Worker in facilitating contact

between community members and organisations, as well as championing

community priorities in strategic/professional settings was very highly valued.

g) Manage and develop community practice

“Support the staff who work with BME – pressure on front line should be addressed”“Regular supervision – external supervision as well as internal supervision”

Some of the comments collated relate to the quality of practice of services

supporting BME communities. A recurrent theme was that they should be

adequately and sustainably funded and staffed, with a strong emphasis that

increasing resources for community development and advocacy would be key in

increasing access to appropriate support.

The strategic context of the service was remarked upon. Staff should be

embedded into strategic decision making processes and be in a position to

influence the development of strategy and services.

Staff should be properly supported by supervision, training and development in

order to ensure the quality of the service.

17 | P a g e

A range of skills were mentioned with the context of supporting BME community

members, requiring the integration of community development approaches one to

one/face to face work as well as formal issue-based advocacy when needed.

One comment emphasised the need for

Conclusion

The impact of austerity on the community sector can be observed through

participants comments, affecting the level of service provision, the stability of the

third sector and the personal circumstance of community members. Many valued

services and group support have been lost, and other others operate on reduced

availability.

Although the impact made by existing BME support services is valued and

appreciated across the whole range of stakeholders it is acknowledged that some of

the needs expressed by communities and their representatives remain unmet for

many individuals. Stakeholders confirm the effectiveness of community

development as an effective way of overcoming barriers to access, but also

appreciate flexibility to respond in an individualised way to community members

issues. This can involve advocacy and one-to-one support to enable effective

signposting.

Mental health services need to be proactive in their efforts to reach out to

communities, and work in partnership with those organisations and representatives

with the most current knowledge of the issues at stake. Having access to trusted

workers acting in a linking and capacity building role is seen as an essential element

of a more strategic and integrated approach to reducing barriers across the system

as a whole.

Recommendations

Leadership by mental health services is required to raise cultural awareness

and responsiveness in their own services

18 | P a g e

Sustained funding for bespoke BME services such as community

development and advocacy should be established and built upon

BME services should be balanced and impartial

BME services should be embedded in the communities they serve, but seen

as impartial and independent across the range of cultures, backgrounds and

identities that come under the heading “BME”

BME services should be influential at a strategic level to ensure that

community priorities inform the future development of services

Any service should take a family orientated approach, and make sure that the

needs of BME women and their children are taken into account

Dedicated support for Refugees and Asylum Seekers is required to mitigate

against the negative impact of their involvement in the asylum process

Advocacy is needed to ensure that individuals can realise their rights when

interacting with public services

Any service should take a holistic and person centred approach recognising

the impact of socio economic factors on mental health and the importance of

practical advice, guidance and support to address these.

Any service should recognise the links between mental health and

drug/alcohol use as a coping mechanism

19 | P a g e