A blog by Dr Shaima Hassan, Postdoctoral Research Associate

Photo by Etienne Girardet on Unsplash

Our ARC NWC vision:

To improve health equity and applied health research through the voice of the population

The ARC NWC Public Community Involvement and Engagement (PCI&E) programme aims to effectively engage and involve seldom heard groups through collaborative working with members of the public and communities in our region.

Seldom heard groups refers to under-represented individuals who potentially use health and social care services and are less likely to be heard by professionals, health services research and decision-makers. These groups include; people with disability, Black, Asian and Minority Ethnic [BAME], Refugees/asylum seekers, Lesbian, Gay, Bisexual, Transgender, and Queer [LGBTQ} people, people who are homeless, young people, people with language barriers, communication impairment and geographically isolated, to give examples of a few.

Often people in seldom heard groups face multiple barriers affecting their engagement with health and social care services and inclusion in health research. This can start at an organisational level, whereby the process in reaching and engaging with such groups may be perceived as challenging due to the lack of understanding and awareness of the groups needs and absence of collaborative relationships across different networks of seldom heard groups.

ARC NWC Seldom Heard Forum aims to create an environment where ideas and views that reflect issues and needs experienced by seldom heard groups can be exchanged, and enhance the learning about the inclusion of diverse population in applied health care and social research, embracing the needs and empowering their involvement in programmes from the outset through to the delivery.

The forum aims to bring together representatives of seldom heard groups from across the North West Coast for the opportunity to share the issues experienced by the groups they represent, share good practice and discuss how best to enhance their inclusion in applied health research to address those issues. This will also include public members from these groups sharing their experiences and challenges they face. This will be followed by a panel discussion, to give attendees the opportunity to ask questions, offer suggestions and get involved in the programme. The forum anticipates to establish an ongoing community of practice to collaborate, flag up/address unmet research issues and reach seldom heard groups.

The Forum was launched on the 22nd of March with up to 80 attendees registered, explored the topic of Ethnic minority and mental health. Unpicking issues associated with a range of socio economic factors, poor access to adequate mental health services and how Ethnic Minority groups with mental health issues can face stigma and barriers to expressing needs from within their own communities.

David Derefaka, Scheme Manager, Black Asian Minority Ethnic Community Development Service, Shap Ltd, highlighted the barriers in accessing mainstream health and social care services and how best to tackle inequality and discrimination in the way health and social care services are delivered. Indicating that the responds to Ethnic Minority should not dependent on numbers, however, health and social care services have to be prepared to respond to all individual needs. Moving beyond the react mode of acting once they have an increased encounter with Ethnic Minority individuals, but to take the initiative in becoming aware of the diverse communities needs and reach Ethnic Minority groups to facilitate access health care services and a platform for effective community engagement.

“A holistic approach was suggested as being helpful, we needed to take each person as an individual”
Leila Saeed, Social Inclusion and Engagement Lead at Mersey Care NHS Foundation Trust followed of reflecting on the equitable and Inclusion approach of the ‘Step Forward’ psychology service across Liverpool. The approach focuses on supporting Ethnic Minority service users and develop a range of culturally informed services that meet the needs of diverse groups at the Life Rooms Mersey Care NHS Trust. Leila indicated that ‘any degree of research cannot adequately reflect the diverse communities we serve if barriers to participation continue to exist’. Therefore, a proactive approach is required to reach the underrepresented and understanding the populations’ health profiles and behaviours.

Simon Torkington, Advocacy Project as Development Officer at Mary Seacole House, put forward the question ‘Are services fit for purpose?’. This created an interesting discussion around the importance in raising awareness of issues faced by people suffering mental ill health from Ethnic Minority background and challenging inequalities in the services provided to them. The challenge is not only about supporting Ethnic Minority access the services but how once they do access the services they receive appropriate care that meets their needs and the continue to stay engaged.

Moreover the forum attendees agreed that there was a necessity for cultural sensitivities and competence.

“We need to be in touch with groups that are trusted by the hard to reach communities. When the right people are utilised, messages get through; Communication is key”

The highlight of the forum was the personal stories shared by our Public Advisers at ARC NWC Naheed Tahir and Farheen Yameen. Being from an Ethnic Minority background, Farheen highlighted that becoming a public adviser has enabled her to realize that in Ethnic Minority community mental health is something which people hide under the carpet and nobody wants to talk about it. There is an element of fear that if they share their issues with others than people will make a wrong impression leading them to feel isolated within their own community.
Farheen suggested “We must think differently to understand deep down root causes and the biggest challenge is to overcome the language barrier, address fear, stigma and lack of culturally sensitive treatment”.

Naheed reflected on the importance of having representative from within the community “Being a public adviser for ARC has given me a platform to be a voice for my community. I understand the diverse cultures, backgrounds and challenges they face. I know first-hand the stigma attached to mental health and talking about this subject through forums like this and collaborating with researchers is the first of many steps.”

Naheed further discussed how mental wellbeing is really important in ethnic communities but unfortunately there is a lack of support from within. It’s still a taboo subject and there is a lack of understanding that mental health is indeed a recognised medical condition. She elaborates on these challenges with a creative piece:

Am I visible to you
Can you see me
Hidden behind a mask
My True face cannot be seen
Endless courage is needed
Unlimited strength is sought
How long can I last
I quietly scream
I silently cry
Am I visible to you
Who am I

Finally, the forum engaged in breakout rooms to discuss the challenges accessing services and involvement in applied health research. Thoughts that was shared included challenges that are created through fear not being listened to and expectations, stigma, acceptance, confidentiality, lack of trust, language/communication barriers, lack of understanding in Trusts, lack of culturally appropriate services, and lack of links with the communities.

With a take away message of ensure that organisations make the effort to ensure their voices are heard using a proactive approach in involving and engaging with communities.

You can watch the entire event back on the video below (via the ARC NWC YouTube channel).