Tag Archives: ethnic carers

Ethnic mental health Carer Forum Update August 2025

by Matthew McKenzie – National Ethnic Mental Health Carer Forum Chair

In August, the online National Ethnic Mental Health Carer Forum came together once again to confront difficult but necessary conversations about systemic racism, discrimination, and the experiences of ethnic minority carers within health and social care. The forum, hosted by Matthew McKenzie, provided a platform for carers, professionals, and researchers to share insights, frustrations, and plans for change.

Focus on Racism and Discrimination

This month’s forum was unflinching in its focus: racism in health and mental health systems. Attendees shared powerful testimonies of racial abuse and discrimination, highlighting how these experiences undermine trust in services and affect both carers and those they support. There was a clear call for honesty – participants stressed the importance of naming racism directly, rather than disguising it behind euphemisms.

The group also discussed the overrepresentation of Black and brown people in prisons, the lack of tailored initiatives for older Black carers, and the persistent inequalities faced by ethnic minority families trying to navigate mental health and social care support.

Research and Evidence from Carers Trust

A key presentation came from Andrew of Carers Trust, who shared research into the barriers faced by Black, Asian, and minoritised ethnic carers. The findings highlighted widespread issues: discrimination, language barriers, lack of cultural competence, and difficulties in accessing benefits. Andrew emphasised the need for culturally inclusive services and stronger outreach strategies, while acknowledging feedback from the forum that research and advocacy must be explicit about racism rather than avoiding the term.

Andrew expanded on the importance of equity in benefit advice, pointing out that many carers miss out on their entitlements because information is inaccessible, overly complex, or not communicated in culturally relevant ways. He called for dedicated advice services that are not only multilingual but also sensitive to carers who may not self-identify as such.

He also spoke about the impact of social isolation on carers from ethnic minority backgrounds, who often have fewer support networks and face stigma within their own communities. Addressing this requires building trust with local organisations and ensuring carer support is visible in spaces where communities already gather, such as faith centres or community hubs.

Finally, Andrew outlined the Carers Trust’s national strategy, which involves working more closely with local carer organisations, producing research that amplifies marginalised voices, and lobbying for systemic reforms. He highlighted how this forum’s feedback directly shapes their advocacy, showing a real commitment to partnership.

Questions raised during Carers Trust’s presentation:

  1. How can Carers Trust ensure its research explicitly names racism rather than using softer language?
  2. What specific support can be offered to carers who do not self-identify as carers and miss out on benefits?
  3. How can Carers Trust improve its complaints handling processes, particularly for carers facing racism and discrimination?
  4. What role can MPs and lobbying groups play in supporting Carers Trust’s advocacy for ethnic minority carers?
  5. How will Carers Trust ensure its multilingual materials are distributed widely enough to reach isolated communities?

Hampshire & Isle of Wight NHS Anti-Racism Initiatives

Usually NHS Mental Health trust representatives update on anti-racism initiatives at the forum. This time Hampshire and Isle of Wight engaged with minority carers.

Elton who is the Diversity and Inclusion Partner from Hampshire and Isle of Wight NHS Trust provided an update on their anti-racist programmes, including the rollout of the Patient and Carer Race Equality Framework (PCREF). The trust has begun implementing cultural competence training, engaging with local communities, and embedding anti-racism into its wider mental health services. While early in its journey, the trust is already seeing changes in communication and engagement across different wards and services.

Elton shared that the trust is actively developing training modules on implicit bias, with the aim of reaching every staff member across its services. This training is intended not as a one-off exercise but as part of a sustained culture change programme. Early feedback from staff has been encouraging, with more frontline workers recognising how unconscious bias can influence treatment decisions.

He also described the trust’s efforts to engage directly with service users and carers, ensuring that their lived experiences feed into decision-making. Listening events, surveys, and advisory panels are being used to capture diverse perspectives, with a particular focus on groups who historically felt excluded from consultation.

In addition, Elton emphasised the need for transparency and accountability. The trust will publish regular updates on its PCREF action plan, allowing communities and stakeholders to scrutinise progress. He acknowledged that this is just the beginning, but stressed that embedding anti-racism into healthcare systems requires openness, humility, and sustained commitment.

Participants raised questions about how these initiatives address specific groups, such as older Black carers and prisoners’ families, as well as concerns about public misconceptions of anti-racism work. Elton acknowledged these challenges and committed to following up with colleagues on gaps raised during the discussion.

Questions raised during NHS Trust’s presentation:

  1. How will PCREF specifically address the needs of older Black adults who often feel invisible in services?
  2. What is being done to support the mental health of prisoners (e.g. Albany and Parkhurst prisons) and their families within this anti-racist framework?
  3. How will the trust prevent the public misconception that PCREF “excludes” white people?
  4. What mechanisms are in place to ensure transparency and accountability in publishing progress updates?
  5. How will the trust measure the long-term impact of cultural competence and implicit bias training?

Academic Research Contributions

The forum also heard from Shylet, a PhD researcher from University of Glasgow, who is focusing on learning disabilities. She presented her work on the lived experiences of Black African families caring for adults with learning disabilities, and invited participants to take part in interviews. Their contributions highlighted the importance of academic research in documenting and amplifying carers’ lived realities.

For more details you can contact her at S.Musabayana.1@research.gla.ac.uk

Carers’ Experiences of Benefits and Support

Another important theme was the financial challenges facing carers. The group discussed the complexity of benefits like Carer’s Allowance and how misinformation or fear of losing other entitlements often deters carers from claiming support. A carer expressed reluctance to claim due to concerns about how it might affect their relative’s benefits, while another highlighted the importance of valuing one’s own contribution and recognising caring work. There was frustration with bureaucratic systems that seem designed to exclude, particularly when layered with the additional barriers of language, culture, and discrimination.

Carers also highlighted the immense value of unpaid care, with estimates placing its worth at over £180 billion per year if it were to be paid for by the NHS. This figure underscored the urgent need for better recognition and support of carers’ contributions.

Strengthening Complaints and Accountability

There was a debate around how carers can raise complaints when faced with racism or poor treatment. Many participants expressed a lack of trust in formal systems like the CQC or Ombudsman, feeling that complaints disappear into bureaucracy without change. Suggestions included working with MPs, lobbying groups, or the media to ensure voices are heard.

Final Reflections

The August forum showed once again how necessary it is to hold these difficult conversations. Carers spoke bravely about racism and exclusion, professionals shared updates on anti-racist strategies, and researchers sought to bring lived experience into policy. Yet the message was clear: systemic change requires more than frameworks and research reports. It requires honesty, collaboration, and persistence.

As host, I was encouraged by the passion and determination in the room. The forum continues to grow as a national voice for ethnic minority carers, and our commitment to addressing racism head-on remains at the heart of this work.

Understanding Care Guilt and Shame in Culturally Tight-Knit Communities

By Matthew McKenzie

Caring for someone with long-term mental illness is a profound act of love and responsibility, just as i cared for my mother, but it is also fraught with emotional complexities, especially within culturally tight-knit communities. The experience of unpaid carers, those who provide care without financial compensation, can be shaped by powerful cultural expectations, traditions, and social pressures. These factors often lead to hidden challenges such as guilt and shame, which can create barriers to seeking help and support.

This blog post which is a transcript of my video explores the intricate dynamics of care guilt and shame, drawing on my insights as facilitator of the National Ethnic Mental Health Care Forum.

While the focus often falls on ethnic minority carers, many of the themes discussed I feel are universal, affecting unpaid carers from all backgrounds. However By examining the cultural ideals, emotional burdens, and systemic challenges faced by carers, we can better understand how to support them and promote positive change in mental health care.

The Role of Culture in Shaping the Carer Experience

Family Duty and Community Honor

In many tight-knit communities, caring for a family member is seen as a moral duty and a source of honor. The expectation is clear: “We look after our own.” This deeply rooted tradition fosters strong family bonds and a sense of belonging. The carer’s role is often defined by values handed down through generations, reinforcing the idea that caring is not just a responsibility but an essential part of one’s identity.

However, these cultural ideals can also create significant challenges. The notion that the “perfect carer never complains or needs help” sets an unrealistic standard, making it difficult for carers to express their struggles or seek support. Weakness is discouraged, and the pressure to cope without showing strain is especially pronounced among men, who may feel compelled to “man up” and avoid displaying vulnerability.

Keeping Illness Within the Family

Another common theme is the tendency to keep issues of ill health, particularly mental illness, within the family or community. This approach is often seen as a way to protect the family’s reputation and maintain social cohesion. Religious and cultural beliefs may further reinforce the idea that problems should be addressed privately, sometimes through prayer or spiritual practices, rather than seeking external help.

While these traditions can provide comfort and a sense of solidarity, they can also lead to isolation and prevent carers from accessing the support they need. The fear of gossip, judgment, or being seen as failing in one’s duty can be overwhelming, especially when mental health is stigmatized or misunderstood within the community.

The Emotional Weight of Caring: Guilt and Shame

How Guilt Creeps In

Guilt is a pervasive emotion among carers, particularly when cultural norms dictate that they should be able to handle all challenges alone. The demands of caring often mean missing out on community events, family gatherings, or social obligations. Community leaders or members may notice these absences and interpret them as letting the community down, adding to the carer’s sense of guilt.

This guilt can manifest in several ways:

  • Resentment and Frustration: Carers may feel frustrated with themselves or the person they are caring for, leading to emotional strain and potential conflict.
  • Personal Guilt: The belief that needing a break or personal time is selfish can prevent carers from prioritizing their own well-being, even when burnout is imminent.
  • Fear of Judgment: In large families or communities, the expectation to manage alone can be overwhelming. Carers may worry about being judged or seen as failing in their role.

The Catch-22 of Self-Care

The need for personal time and self-care is undeniable, yet carers often feel trapped in a catch-22. Taking time for themselves is viewed as selfish, but neglecting their own needs can have detrimental effects on their mental and physical health. The pressure to uphold cultural ideals and avoid showing weakness makes it difficult to break this cycle.

In some communities, there may not even be a word for “carer”—it is simply assumed that family members will step in as needed. This lack of recognition further compounds the challenges, as carers struggle to articulate their needs or seek validation for their efforts.

The Impact of Shame and Stigma

Saving Face and Avoiding Help

Shame is closely linked to guilt, and both emotions can prevent carers from reaching out for help. The desire to “save face” is strong in many communities, where reputation and social standing are highly valued. Admitting to struggles or accepting support may be seen as a sign of weakness or failure, leading carers to reject offers of assistance from mental health services or outreach programs.

Internalized comments such as “this is your duty,” “you must put up a front,” or “we don’t put family in care” reinforce the belief that seeking help is unacceptable. The fear of gossip and misunderstanding is real, especially in communities where mental health is poorly understood or lacks a cultural vocabulary.

Religious and Cultural Barriers

Religious identity can also play a role in shaping attitudes toward mental health and caring. In some faith-based communities, there may be little space for open discussion about mental illness, and spiritual solutions may be favored over professional support. This can create additional barriers for carers, who may feel unsupported or misunderstood by both their community and the wider mental health system.

Systemic Challenges: Inequalities in Mental Health Care

The Patient Care Race Equality Framework (PCREF)

Recognizing the unique challenges faced by minority carers, NHS England has developed the Patient Care Race Equality Framework (PCREF). These set of policies aims to tackle inequalities in mental health care, particularly for ethnic minority groups. The framework emphasizes the importance of breaking down guilt and shame, promoting better outcomes for minority communities, and ensuring that carers’ voices are central to service design and decision-making.

However, systemic barriers persist. Minority carers may be reluctant to engage with mental health services due to fears of poor outcomes, discrimination, or further isolation. The double tragedy is that those who need support the most are often the least likely to receive it, as both community and systemic factors conspire to keep them from seeking help.

The Importance of Carers’ Voices

A key focus of the National Ethnic Mental Health Care Forum is to ensure that carers’ voices are heard and valued. Too often, the emphasis is placed solely on patients or those with lived experience, overlooking the vital role that families and carers play. Guilt and shame can stop carers from engaging with services, making it essential for mental health systems to recognize and address cultural barriers.

Breaking the Cycle: Towards Better Support and Outcomes

Engaging with Communities

To break the cycle of guilt and shame, it is crucial to engage directly with communities. This means attending religious and cultural gatherings, listening to minority carers and patients, and understanding the specific struggles they face. Education is key!! both for carers and for mental health professionals. Training staff to appreciate community values and avoid assumptions about disengaged carers can help foster trust and collaboration.

Creating Safe, Non-Judgmental Spaces

Safe spaces where carers feel invited and heard are essential. These settings should be non-judgmental and designed to encourage open dialogue. Just like my Ethnic carer forum. Co-production, where patients and carers are involved in designing and delivering services and can help ensure that support is tailored to the needs of diverse communities.

Promoting Positive Role Models

Just as I mentioned when I spoke at the North East London NHS PCREF event, I feel that Role models play a powerful role in challenging stigma and inspiring change. Mental health trusts and systems should promote positive examples of carers who have reached out for help and benefited from support. Sharing stories and experiences can help others see that seeking help is not a weakness, but a strength.

Self-Care as Strength

Promoting self-care as a strength, rather than a weakness, is vital. Carers need to recognize that it is okay to ask for help and take time for themselves. Engaging with community leaders and faith networks can help change attitudes and reduce stigma, using trusted voices to advocate for better understanding and support.

The Path Forward: Building Inclusive Mental Health Services

Co-Production and Service Design

Including carers in service design and decision-making is essential for building inclusive mental health services. By putting carers at the center of policy and practice, systems can better address the unique challenges they face and promote positive outcomes for all.

Education and Awareness

Ongoing education and awareness-raising are critical. Carers, communities, and professionals must work together to challenge stigma, promote understanding, and create environments where everyone feels supported.

The Power of Conversation

Ultimately, breaking the cycle of care guilt and shame requires open conversation and a willingness to learn from each other. By sharing experiences, listening to diverse voices, and fostering empathy, we can build stronger, more inclusive communities and mental health systems.

Conclusion

Care guilt and shame are complex, deeply rooted issues that affect unpaid carers across culturally tight-knit communities. The emotional weight of caring, compounded by cultural expectations and systemic barriers, can lead to isolation, burnout, and reluctance to seek help. Addressing these challenges requires a multifaceted approach engaging with communities, promoting positive role models, creating safe spaces, and ensuring carers’ voices are central to service design.

By working together to challenge stigma and promote understanding, we can support carers in their vital role and build mental health services that truly meet the needs of all. The journey is ongoing, but with awareness, education, and compassion, positive change is possible.

Caring for someone with mental illness? Check out our Ethnic carer forum. Dates shown below.

Ethnic mental health Carer Forum Update July 2025


Author: Matthew McKenzie

Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum

On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.

This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.

Highlights from July’s Forum

🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration
Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.

🟣 Powerful Feedback from Carers
Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”

Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.

These testimonies highlighted how far we still need to go.

🟡 Inclusive Language & Representation
There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.

🟢 The Work Ahead
Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.

A Forum of Global Carers, Local Action

This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.

One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.

Want to Get Involved?

The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.

For bookings or questions, contact me at info@caringmindblog.com
📱 Or download and scan the QR code in the flyer above

Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.

Next National MH carer forum in August 29th 10:30 am
Matthew McKenzie
Founder – Caring Mind Blog
Facilitator – National Ethnic Mental Health Carer Forum

Ethnic mental health Carer Forum Update November 2024

Welcome to a brief update of my ethnic mental health carers forum. For this month we were joined by South West London & St George research team. The team from a training company introduced a cultural capability training program aimed at reducing race and ethnic disparities in mental health care, while Matthew presented a summary of various reports highlighting health inequalities faced by ethnic minorities in the UK. The Forum also discussed the importance of advocacy for carers, the challenges of engaging with diverse communities. A carer from South Yorkshire also discussed the potential for setting up a group to support black people in the area.

Cultural Competence Training for Trusts
The training company introduced a cultural capability training program they are developing for the South West London and St. George’s Mental Health Trust. The program is part of an ethnicity and mental health improvement project and aims to reduce race and ethnic disparities in mental health care. Representatives from the team also discussed their evidence review on cultural competence in mental health care and their use of a model of cultural competence. The training is expected to impact staff, carers, and patients by promoting culturally sensitive care plans and reducing inequalities. The team also discussed the potential to tailor the training for other trusts.

Addressing Health Inequalities and Disparities
Matthew presented a summary of various reports highlighting health inequalities and disparities faced by ethnic minorities in the UK. He emphasized the importance of these reports in supporting the Patient Care Race Equality Framework (PCRF) and other initiatives addressing health inequalities, discrimination, and racism. The reports, from organizations such as the NHS Race and Health Observatory, Public Health England, and the CQC, demonstrate that ethnic minorities face higher risks with certain health conditions, barriers to accessing services, and poorer health outcomes.

Matthew also mentioned the role of institutional racism, socioeconomic disparities, and cultural barriers in perpetuating these disparities. He concluded by emphasizing the need for systematic reforms to ensure equitable health outcomes for all.

Addressing Healthcare Disparities and Trauma
Laura from Cygnet HealthCare expressed her appreciation for Matthew’s ability to present information in an understandable and accessible manner, which she believes is not done enough. She also highlighted the importance of Matthew’s role in educating others and ensuring the right actions are taken. A carer member of the group then brought up a report from the Race Equality Foundation and Learning Disability England, which highlighted disparities in access to healthcare for ethnic minorities with learning disabilities. She shared her personal experience of a young person with a learning disability, autism, and mental health issues facing challenges during the COVID-19 pandemic. The group acknowledged the system-generated trauma faced by carers and the need for more awareness and action on these issues.

Mental Health and Learning Disability Event
In the meeting, A carer highlighted the upcoming mental health and learning disability listening event, which was previously cancelled due to lack of awareness. Others at the meeting expressed their support for the event and the importance of advocating for carers.

A representative from Surrey & Borders NHS trust who is the programme lead for carers and co-production, discussed the Trust’s co-production framework and their efforts to reach a diverse community for co-production opportunities. She also mentioned the Trust’s strategy to mirror the triangle of care. Matthew shared his experience at the Trust’s learning event and his plans to help promote the Trust’s work, particularly in relation to carer involvement.

Mental Health Event Postponement Concerns
A carer expressed surprise at the postponement of a mental health and learning disabilities listening event, which was initially scheduled for September. Another carer, who is relatively new to the Maudsley, had not been aware of the event’s postponement and was concerned about its lack of awareness. She had reached out to various individuals within the organization, including others, to discuss the event. Carers suggested that the carer should also speak to Zoe Reed or Shania, who are in charge of PCREF, to ensure the event’s success. The carer agreed to continue her efforts to promote the event and ensure its awareness.

Supporting Black Mental Health Groups
Carers discussed the potential for setting up a group to support black people in South Yorkshire, with Matthew suggesting that funding could be sought from the ICB and the charity associated with their NHS trust. A carer shared his experiences with a similar group in Peterborough, emphasizing the need for more conversation and less medication in mental health care for black people. A Carer, who is involved in setting up a group in Kent, shared her challenges due to the predominantly population in her area. Matthew also mentioned an upcoming event on the new Mental Health Act and its potential impact on carers. The team agreed to reconvene in January.

Time to be heard – Bridging Minds Forum

Thanks for checking in. I have exciting news for carers from an ethnic background. Wandsworth Carers are running their Bridging Minds forum on the 19th of July from 3 pm, which will take place at Balham Library Hall, 16 Ramsden Road, London, SW12 8QY

BAME forum will be Facilitated by the Community Empowerment Network, Wandsworth Carer’s Centre, NHS Wandsworth Talking Therapies

The forum will focus on discussions around race, ethnicity, and culture in relation to mental health. The forum will feature culturally specific foods, and all Carers who sign up and attend will receive a £30 supermarket voucher as a token of our appreciation for their time and input.

I will certainly be attending this exciting forum and hope ethnic carers who support those with mental illness from the borough of Wandsworth can drop by.

To book please email either Lindsey.cross@soundminds.co.uk or panashe@wandsworthcarers.org.uk

See you there

Exploring the experiences of carers from Black communities

Welcome fellow carers. As of writing this blog post, it is still the start of Black History month 2023. There are many exciting events taking place. I will try my best to help promote ethnic carer events.

Luckily we have an event aimed at unpaid carers from Black communities. We have to explore and acknowledge that not all carers experiences are the same. Just like I often say not all carer journeys are the same.

As part of Black History Month, Dr Juliana Onwumere from the Institute of Psychiatry, Psychology & Neuroscience at King’s and South London and Maudsley NHS Foundation Trust will facilitate an online panel discussion focussing on the experiences, wellbeing and unmet needs of carers from Black communities in the UK, including young carers.

This event is open to anyone including members of Black communities across the UK.

Panel members:

  • Tim Banks, Research & Engagement Manager, Carers Trust
  • Peter Alleyne​, Director of Equity, Inclusion and Involvement, Rethink Mental Illness
  • Angela Anwah, Founder & Director: Mental Health and the Arts
  • Michael Shann, Head of Carer Support, Carers UK

Ethnic mental health Carer Forum August 2022

Welcome to a quick update from one of my carer groups. This one is from the August gathering of the online Ethnic BAME mental health carer forum. A group that focuses on ethnic mental health carers, diversity, race and mental health. I am being a bit naughty since I have not done an update on my groups for some months (busy working on a few things as usual).

We were lucky to have the following speakers attend for August 2022

  • Dr Karen Jutlla (Dementia Lead for the Institute of Health at the University of Wolverhampton) on Race and Dementia
  • Faith Nyandoro (Senior Lecturer) – impact of culturally and personally tailored music and singing interventions
  • Dr Sheila Hardy​ (GP, Carer and Primary Care Mental Health Trainer) – Parity of Esteem
  • Melanie Crew (Senior Policy and Research Officer at Carers UK) – Carers UK campaign updates

  • Dr Karen Jutlla presents to the group

Dr Karen started out by stating what her current role is being the dementia lead at the University of Wolverhampton. She talked about her research interests which has been on going for 15 years looking at dementia care and ethnic minorities, and what research she can do to improve care. The research then feeds into her teaching. This is where she feels responsible for overseeing all the dementia education on the courses she teaches. Dr Karen mentioned lot of her work is about supporting services, healthcare workers and policy makers to make sure that their services are culturally inclusive.

Karen then pointed out that she invited her PhD students Faith along to the ethnic MH carer forum, because she thought we would be interested in the work that she’s doing. Plus it would be a fabulous opportunity for Faith to get our feedback. This is because the group is seen as people with experts by experience, and Faith is looking at music therapy and the African Caribbean community for people living with dementia and what the benefits of such a creative therapy can be.

To hear more about Dr Karan’s work, check out her website – https://drjutlla.com/

  • Faith Nyandoro presents on music therapy for dementia project

It was now Faith’s turn to present as she mentioned her supervisor is looking at her research interest in dementia and music therapy for people living with people living in the Afro Caribbean community.

Faith pointed out that it is a qualitative study. And the topic is to explore “the impact of culturally and personally tailored Music”. Plus also seeing individual the health and well-being of people living with dementia from black, African Caribbean background.

The group started to ask a few questions on what it means, where Faith explained that they where looking at different types of music in which she also listened to from the Afro Caribbean community, but also Africans include music such as Calypso, Afro beats, reggae and so on to see if that has an impact on the health and well being of people living with dementia.

Faith mentioned what Karen was talking about, in that there’s been different interventions to manage Dementia, and some of the interventions that have come up have been political interventions and medical interventions, using drugs available to treat dementia. There also have been some non pharmacological interventions using therapies that being reality orientations and validation, CBT, and so on. Faith stated that unfortunately pharmacological interventions although good, can come with side effects. So with this, the government really pressing on to looking at non-pharmacological interventions. These interventions may not really need the use of drugs. It can improve the health and well being of people living in the moment with dementia.

Faith continued by stating that few black Caribbean people have access to these non pharmacological interventions. So a critical aspect of supporting people with dementia, particularly people from BME communities is by developing interventions that are meaningful and culturally sensitive. And so in terms of music, which is her area of interest, you can find that the interventions that are out there, should be specifically tailored for people. Just as it is for Caucasian people.

Faith then talked about the different types of music interventions that are out there and what the research has a found out, so researchers suggest that people who engage in arts and health problems are at lower risk of dying and are more likely to report good health. This is because the role of art and music in supporting the patient well-being is increased and being recognised.

The way Faith will work on her research is discussing with participants about their memories, thoughts and feelings and about the music. And this will take about 20 minutes. At the end of the nine weeks. She will then carry out that same assessment that she spoke about with the group earlier. She wants to look at the dementia mood and the quality of life. Where Faith will measure the differences.

Faith then arranged a quick workshop session with the group focusing on her project.

  • Dr Sheila Hardy​ presents on Parity of Esteem

Dr Shelia was next to present, she was happy to see our group feedback on the previous presentation. Shelia mentioned her PhD was on physical health and mental illness, where she was trying to show how important it is to check physical health in primary care. Most of her research was about the impact of training the trainers, training nurses and on the health of people with severe mental illness.

Shelia also spoke about her own caring duties as she is caring for dementia. It was tricky for Shelia to present due to her caring role, but we were appreiciative that she engaged with the ethnic carer group.

There is high interest on why people with severe mental illness (SMI) are more likely to have the following, which Dr Shelia presented on:

  • Why those with SMI’s Die prematurely
  • Have a preventable condition – respiratory disease, sexually transmitted infection, sexual dysfunction, obstetric complications, osteoporosis, cancer, dental problems, metabolic disease, diabetes or pre-diabetes, cardiovascular disease, obesity, hypertension, and raised cholesterol
  • Lead unhealthy lifestyles – smoke, eat a poor diet, have low levels of exercise, have a high alcohol intake, misuse drugs, engage in unsafe sex
  • Experience diagnostic overshadowing
  • Be prescribed medication which may have a negative effect on physical health, e.g. antipsychotic
  • Live in poverty

Since this forum is an ethnic minority carer forum. Dr Shelia spoke on the following regarding how SMI’s impacted on ethnic minority groups.

  • In England, there are health inequalities between ethnic minority and white groups, * and between different ethnic minority groups
  • Access to primary care health services is equitable for ethnic minority groups, but less consistent across other health services
  • People from ethnic minority groups are more likely to report being in poorer health and to report poorer experiences of using health services than their white counterparts
  • People from the Gypsy or Irish Traveller, Bangladeshi and Pakistani communities have the poorest health outcomes across a range of indicators
  • Compared with the white population, disability-free life expectancy is estimated to be lower among several ethnic minority groups
  • Rates of infant and maternal mortality, cardiovascular disease (CVD) and diabetes are higher among Black and South Asian groups
  • Mortality from cancer, and dementia and Alzheimer’s disease, is highest among white groups

Half way through Dr Shelia’s presentation there were a few questions where Shelia explained Why people with mental illness have poor physical health

  • Genetics – low HDL, raised blood glucose, low lung function values
  • Poor motivation (due to their mental health problem)
  • Difficulty in concentration and planning (due to their mental health problem)
  • Less likely than the general population to receive support to change unhealthy behaviour
  • Less likely than the general population to receive medical examination and intervention
  • Physical symptoms often attributed to mental health problem so early intervention not offered

Lastly and most importantly Dr Shelia finished up on what actions can help to prevent health problems

  • Engaging in healthy lifestyle behaviours which include:
  • Eating healthily
  • Exercising regularly
  • Getting adequate rest and relaxation
  • Limiting caffeine and alcohol intake
  • Avoiding drugs and smoking
  • Safe sex
  • Maintaining physical personal care
  • Seeking medical care when required

Obviously there are more things that can combat the problem of paraity of esteem, but this is a start to educate others on the challenges.

Dr Shelia Hardy has a book out if interested “Mental Health and Wellbeing: A guide for nurses and healthcare professionals working with adults in primary care“

  • Melanie Crew presents updates from Carer’s UK

Next to present and engage with our ethnic carer group was Melanie who is the Senior Research Officer from Carers UK. She Thanked us for giving her the opportunity to present Carers UK updates.

Carers UK is a national carer’s charity fighing and supporting millions of carers for the UK. They campaign heavily for Carer’s rights and carer awareness.

Melanie spoke on a few updates on what Carers UK have been working on. She mentioned that they have their annual survey running at the moment, which is called “state of caring”. This is where they asked carers quite a lot of questions about their experiences. So it covers issues like “cost of living”, “delays with accessing health care” and other recurring themes like mental health, employment and technology.

Melanie mentioned that it’s really important that they know what carers are struggling with, otherwise they can’t claim to campaign on behalf of people fighting to provide care. Surveys are an important tool because if they are not listening to carers, and asking them what they want or what they need. Then carers will continue to struggle.

Even at the time, they have not had loads of responses, especially responses from ethnic minority carers. So Carers UK are trying to contact lots of different organisations who work with ethnic minority carers, and also try to share the survey with them.

Melanie raised the importance that it would be really great if any of us have the time to go though the survey, as the charity feel that the responses are really important to them.

Melanie then mentioned anothe project that Carers UK are working on called “Making carers count”. This is done in partnership with another national carers organisation called “Carers Trust”.

The project is looking at certain groups of carers that they know less about, so we kind of refer to them as underrepresented groups. This includes carers from ethnic minority backgrounds. So her role in that project is carrying out research which led to a published a research report about the experiences of ethnic minority carers during the pandemic.

Melanie updated on more research, ideas and campaigns from Carers UK, where members got the chance to ask questions and probe about projects. I appreciate Carers UK engaging with our ethnic mental health carers forum and look forward for more updates in the future.

Carers UK is working on a new campaign, if interested see the link below

New Prime Minister must act quickly for unpaid carers

Bromley, Greenwich, Bexley & Lewisham Ethnic Carer Forum November 2021

Welcome to my November update of my ethnic carer forum. I am slowly changing it from BAME to ethnic although most members who have attended over the years are not that fussed with the title, it is the discussion, focus and engagement regarding the challenges many minority ethnic carers face. The forum covers a large area mainly Lewisham, Greenwich, Bromley and Bexley due to my other carer groups in Greenwich and carer forums in Lewisham. The forum seeks engagement from South London & Maudsley NHS trust and Oxleas NHS trust half the time, but the carer group gets education and empowerment from national speakers regarding race, racism, complexities in mental health and so on.

For the November BAME carers forum the following speakers were

  • Brenda Onatade – Her Patient Carer Race Equality involvement and update
  • Samantha Hosten – Importance of Black History month mental health
  • Lauren Obie – Blacks MindS Matter UK
  • Lily and Jemma – Maudsley NHS Patient Research ambassadors
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