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Exploring the experiences of carers from Black communities

Angela Kibia

Research Assistant at IoPPN

29 November 2023

On Tuesday 24th October, as part of IoPPN's Black History Month events, Dr Juliana Onwumere (Reader in Clinical Psychology) facilitated an online panel event to explore the experiences, well-being, and unmet needs of carers, including young carers, from Black communities in the UK. In this blog, research assistant Angela Kibia recounts the event and shares some reflections and useful resources.

In the UK, an estimated 5 million+ people provide unpaid care and support to a relative, close friend, neighbour or acquaintance. Evidence suggests there are unique experiences and challenges often faced by Black carers that can be overlooked by service providers and from within their own networks (please see bottom of page for references and sources). Some of these include issues related to racism, discrimination, and fear and mistrust of services.

These can also be alongside common concerns often faced by Black minoritised groups such as financial worries. In addition, it is not always clear where carers can access the right support, particularly when many might not recognise themselves as a ‘carer’ or in a caregiving role. For these reasons, holding an event to explore their experiences and needs was essential.

Black communities in the UK experience a broad range of health, social and financial challenges. Therefore, it is essential that the lived experience, support, and wellbeing needs of informal carers from Black communities are identified and addressed. – Dr Juliana Onwumere

The diverse panel comprised people with lived experiences of caregiving and representatives from UK based organisations and charities that support those in caregiving roles.

Panel members:

  • Annette Davis: Lived experiences of caregiving
  • Faith Smith: Lived experiences of caregiving
  • Angela Awuah: Founder & Director of Mental Health The Arts
  • Michael Shann: Head of Carer Support, Carers UK
  • Tim Banks: Research & Engagement Manager, Carers Trust
  • Peter Alleyne​: Director of Equity, Inclusion and Involvement, Rethink Mental Illness

Panel Members: Lived experience

Annette Davis opened the event by sharing her experiences of being a carer from a Black community. Starting her caregiving role in 2016, she relayed that she often felt her needs were neglected as support would be given to the service user, leaving her isolated.

Annette expressed that others do not necessarily appreciate the unique experiences of being a Black carer. She highlighted the stigma around mental health problems in Black communities and how challenging it was to get support. She felt that acknowledging there was an issue was an important first step and recognised there is a collective responsibility to support carers from Black communities.

The following audio recording is on the difficulty of finding resources and spaces for support as a Black carer.

Faith Smith echoed Annette’s thoughts on the experiences of being a Black carer, highlighting that often, as a Black woman, she was stereotyped as being strong and able to do anything. This is of particular importance as the theme for Black history month this year is ‘Saluting our Sisters’. Faith felt this was a stereotype of Black women that should be dismantled, especially as someone with the responsibility of supporting others not only as a carer but as a mother, daughter, and other familial responsibilities.

The following audio clip focuses on finding support and the effects of loneliness and stigma.

Angela Awuah shared her experiences of becoming a carer for her mother at a young age. Being a young carer meant it took her a longer time to navigate different services, often being overlooked by some services. Even while sharing her story with others, she found she would be the only young carer in the room, creating a sense of loneliness. However, through her experiences she created a social enterprise called Mental Health The Arts, which is an early intervention creative arts academy for young people aged between 13-25 years with lived experience of mental health conditions. Angela is now in a position to advocate for young carers who, like herself, may not feel they have a voice or “have fallen through the cracks of society”.

UK organisations and charities

Michael Shann, from Carers UK reported that the number of Black carers who are members of Carers UK fell below the levels the organisation would expect or want, given their numbers in the general population. Carers UK are engaging with Black carers and supporting efforts to increase the numbers of memberships through a dedicated webinar series with health and social care professionals and a best practice guide. Michael also shared recent research from Carers UK that showed Black carers were more likely to be impacted by closure of local services and that services did not meet their needs.

BHM Carers 300x300

Following on with similar findings from their research, Tim Banks from Carers Trust conducted interviews with carers from racially minoritised communities that highlighted many practical barriers they experienced in their caregiving roles. Language barriers were one important example identified and included not being able to communicate using English but also difficulty making sense of complex medical jargon often used by professionals. Strikingly, it was found while carers have a ‘poor fit’ regarding service provision, when it came to Black carers there was no fit.

Finally, Peter Alleyne from ReThink Mental Illness spoke about his role as Director of Equity, Inclusion and Involvement. He shared that Black service users with their own lived experience of mental health conditions are involved in the design of their policies, campaigns, and service provision, as a means of elevating their voices. This is implemented through the charity’s lived experience advisory board.

ReThink Mental Illness also has a carers advisory board that provides a valuable role in contributing to the direction of the charity and quality of the services it provides. Peter highlighted the carers advisory board does not, currently, have any carers from Black communities, which highlights obvious issues about representativeness and a gap when ensuring diverse programmes. However, the charity has enlisted regional advisory panels to provide a voice to a broader range of communities at a local level to better co-produce services.

Reflections on the event

The event ended with a Q&A session with comments on co-learning between carers in Black communities and organisations. People expressed they respected the honesty from organisations and their commitment to working more with Black carers through their research and practices. Many left the event feeling inspired during this very timely conversation but also recognised that real change is needed. They shared that follow-up events should be facilitated to encourage a deeper discussion of issues surrounding Black carers.

We encourage readers to reflect on the key takeaways from this event, gaining a deeper understanding of the experiences of carers from Black communities.

We would like to thank everyone who registered and attended the event, with a special note of thanks to our panel members and our supporting partners including the Maudsley Charity.

Further information

Mental Health The Arts

Carers Trust

CarersUK

Rethink Mental Illness

  • Rethink Mental Illness are recruiting to their Lived Experience Advisory Board (LEAB).They want the board to be a diverse, supportive, inclusive forum for people who have lived experience of mental health conditions, are passionate about supporting mental health and want to help the organisation make a difference in mental health policy and services. Visit rethink.org/LEAB to find out more about LEAB and how to get involved. Please note that the deadline for expressing interest is Friday 1st December 2023.
  • They will also be recruiting to our Carers Advisory Board (CAB) in early 2024. The group is a supportive and inclusive space for people with caring experience for someone with a mental illness to come together to shape change across Rethink Mental Illness. If you are interested in getting involved contact Rethink’s Involvement Team: involvement@rethink.org
  • Rethink Mental Illness/Mental Health UK resource: ‘Black, Asian and Minority ethnic mental health’
  • Advice and information on Black, Asian and Minority Ethnic mental health

Other helpful resources and information

Further references for experiences and challenges faced by Black carers:

For more information, please contact Angela Kibia.

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