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