Been a while since I did a carer forum update, but felt I should do one otherwise I would be distracted by something else. Here is the brief update of my ethnic mental health carer forum for September 2022. The forum is aimed at those from an ethnic background caring for someone with mental illness.

The speakers for September are listed below

• Madeleine Oakley on her Kings College London carers peer research group
• Colin King presenting on the Lancet report – Whiteness, madness, and reform of the Mental Health Act
• Louise Goff on the Kings college London Health promotion Heal-D: a culturally-tailored diabetes self-management programme for adults of African & Caribbean heritage

• Madeleine Oakley presents on her carers peer group

Madeleine from Kings College London has been using her skills as a psychotherapist to give people space to talk about their experiences, she has found that carers really appreciate connecting with each other. Madeleine also has the lived experience of caring for somebody with autism. Her groups have been for people who are caring for a family member who has got autism. So she started with autism and eating disorders, because there was a lot of research going on about that at the South London and Maudsley.

She is now doing an autism and psychosis carer group. Which is once every Friday morning, a month. Madeleine stated that unfortunately it does clash with my group one Friday morning, but basically, the next one is on the 23rd of October. The latest one has already started in September. Madeleine hopes members of my group can help spread the message.

Madeleine has also been interviewing family carers of people with autism and psychosis. So they’ve got both conditions that people are looking after. She is trying to explore the experiences of carers. How did they get the assessments? How did they get the treatments, how was being a carer affecting their lives?

Questions from carers

• I started off asking “Is this group indefinite or is it just runs for a set period?”

Madeleine responded

The she wishes it was indefinitely. They are always looking for more funding, but it’s only until the end of March. So it’s a short thing as it is basically part of her PhD. But at the same time, she is applying for funding to sort of make the carers group permanent because the sad thing is all the work that she has done with carers since 2019, when she finishes her PhD, then where is the group going to?

• Colin King presenting on Whiteness, madness, and reform of the Mental Health Act

Colin explained that he was sectioned schizophrenia within Maudsley many years ago, but what he was really concerned about was the whiteness within the theoretical and diagnostic framework was leading to historically the over representation of particular groups.

This led Colin to do an analysis looking at the start of something called cartwright 1851, which is the first diagnosis of race, which is when the black person ran away with slavery, they were diagnosed with, with depomania, and if you do the travel on the lunacy Act, at the mental health Act to the white paper Act to the White Paper review, Colin mentioned that we still got an over representation or of communities in the mental health system.

Colin wanted to understand what was whiteness, what why was whiteness, such a pervasive, intrusive and powerful intervention is in terms over representation.

Colin stated that some of it can be located in the history of theories of psychology and psychiatry that perpetuate eugenic theories about the black body and the black mind. And these theories emerged in the period of slavery, when there was a perpetuation of a division between what was whiteness as superior, and blackness as inferior. And these are some of the writers from Cartwright perpetuate his idea. Colin mentioned that even Henry Maudsley who ran the Maudsley had perpetual eugenic ideas about race.

Colin was really concerned about what the outcome this lead into in terms of particular types of whiteness, and the outcomes for diverse communities over the last 400 years, but particularly where we are with the activism for the PCREF (Patient Carer Race Equality Framework) and other campaigning groups.

So Colin began to analyze two diagnostic frameworks in terms of why they were leading to these race diverse outcomes, DSM-5, and also ICD-10. Colin mentions a book where whiteness contributes to the legalization of race as a diagnostic framework.

This leads to a problems with ideas that black people are much more naturally disordered, and what’s more psychotic. Colin felt that as activists, instead of trying to change the diagnostic framework, we should try to improve the system rather than dismantle it. THe main concern he was looking at, was community treatment orders.

And the data has continued to show that a particular groups are over represented are usually black Caribbean men, South Asian patients, women, but the biggest concern for him was why is it in 2007, when they introduced something called Community Treatment orders that 92% of them are used in relation to black men. And why is it with restraints show 75% of them have been used in relation to men. So Colin wrote a paper and it was really a plea for the abolition of community treatment order which he interpreted as a new type of slavery in mental health care and needed to be changed.

Colin spoke about the importance of being an activist, but also allowing lived experienced from the community to be involved in training and raising the importance mental health in the communities. Colin mentioned we all have something to contribute and if MH systems and beyond including schools, housing and communities services do not include minority lived experience then it hurts the community as a whole.

• Louise Goff presents on a culturally-tailored diabetes self-management programme for adults of African & Caribbean heritage

Louise started training as a dietitian about 25 years ago, and then she went straight into a research career all focused around type-2 diabetes. This was on how nutrition and food affects diabetes, how it can prevent diabetes, how it can treat diabetes, She has been doing that for about 25 years now. However through her education, she was well aware that rates of diabetes were were significantly higher in people from African and Caribbean backgrounds, as well as in other minority ethnic backgrounds in the UK.

She then became really aware of contradictory messages from her professional colleagues compared to her own family and my social network. The messages that she had from her professional colleagues and network was that, people weren’t showing up for their diabetes appointments, and therefore, they didn’t care about their diabetes. This was particularly common in people of African or Caribbean heritage. And so there was this perception that diabetes wasn’t thought to be serious and wasn’t cared about. Speaking to her friends and family, particularly people who had diabetes, were so fearful of their diabetes, and so worried about their diabetes, and really wanted information about how to improve diabetes, how to avoid diabetes.

So that really led to her wanting to focus her research career more towards understanding that situation and understanding on what is going on in the health system. And what is going on in the communities. She has been using her research platform to try and unpick and work towards trying to improve that situation really. A while back she received some research funding to develop diabetes self management program specifically tailored to the needs of adults from African and Caribbean backgrounds

The project has the following skills

• Group-based
• 7 sessions of 2 hours – 1-hr educational discussion & 1-hrexercise class
• Delivered weekly
• Delivered using video conferencing
• Dietitian & community facilitators

The program is called healthy eating and active lifestyles for diabetes, or abbreviated down to heal D, but it’s a self management program that’s been developed to help people who are living with type-2 diabetes, to really understand what they need to do in their self management. In terms of diet and physical activity and other lifestyle components to improve the management of diabetes, all the while specifically tailored to African and Caribbean culture.

The program is called healthy eating and active lifestyles for diabetes, or abbreviated down to heal D, but it’s a self management program that’s been developed to help people who are living with type-2 diabetes, to really understand what they need to do in their self management. In terms of diet and physical activity and other lifestyle components to improve the management of diabetes, all the while specifically tailored to African and Caribbean culture.

Louise stated that this is about cultural health beliefs, cultural foods, cultural practices around food and physical activity and body weight. And all of the things that we know about medications and all of the things that we know that are related to diabetes management.

Louise continued she is actually following on from the really important messages that Colin was just sharing with us. when she went about developing this program, she knew that it was the people with the lived experience who were the experts through their lived experience that really needed to lead this project to understand what was needed in a program that would really support people.

So all of this work was done using a sort of community partnership approach, whereby they engaged with our communities, and this was conducted in southeast London.