In May 2020, St Thomas Charity commissioned Centric to understand the impact of Covid-19 on the communities of Lambeth and Southwark in South London. The need was generated because of the emerging ‘medical scepticism’ and apathy of diverse Black and minority groups encountered by the hands of the NHS and its health care system. Centric set out to further understand this dilemma amongst the South London communities and the counter measures these minorities are resorting to.

Centric quickly resolved that the traditional research practice needs to be altered to combat and explore these phenomena amongst these minority communities in order to adapt and design the research to the values and ethics of these groups. This helped to somewhat manage the unanticipated challenges encountered when delving into social science projects and vulnerable entities of the society. To avoid research extraction and distrust amongst the research participants, the FISH model was adopted in collaboration with Ethicist, Dr. Leslie Cannold.

The research model for community research was positioned with values such as regard, respect, inclusion and empowerment to the communities involved. This worked alongside further reflective sessions with researchers to monitor and explore any predicaments faced during the fragile encounter.

Field of Research

Centric focussed on ways to get the maximum engagement of research weary communities. Patel (2016: 164) notes that: “further abusing Black and minority ethnic populations for their own interests, for instance, career development”. This can lead to research-weariness of communities.

Research weariness was the biggest challenge facing Centric as the prospective participants showed a lack of interest and distrust initially to be involved in the project. The community research model worked really well in this scenario, helping the researchers to build trust with the participant communities from sites, such as Southwark and Lewisham. The community researchers used their own networks to recruit research participants from these boroughs, producing a good balance of demographics.

Centric addressed:

• Participants’ experiences with healthcare services and professionals in a range of settings.
• Participants’ sources of knowledge and information regarding health and medicine.
• Public’s alternative and holistic health remedies and therapies.
• Discrimination within healthcare.

Issues and Findings:

• Participants affected by tight NHS budgets and overworked GPs and nurses leading to lack of care and time devoted to patients.

“Right now the NHS is at breaking point, literally in terms of finance, in terms of staffing, in terms of resources.’’

“… my daughter had an accident … it was kind of like an emergency situation. My experiences were that, I think maybe it was just a bad day, but I found the nurse was a bit harsh, even though it was a child - my daughter must have been about eight or nine at the time … But I just found that the nurse was a bit abrasive, because my child was very distressed. But I didn't find this nurse to be very caring.”

“So definitely people are complaining there's not enough time. Giving patients time these days, it’s all on the phone, interviews and you know, people are not really happy with that, there’s no care anymore, you’re just processed as quick as possible.”

• Participants reduced trust in the system as a result of several traumatic experiences faced in the hospitals. This leads to feelings of disempowerment, plus a lack of trust in the system.

“When I was seven I suffered, well not suffered, I experienced a traumatic loss in my family that really affected me. And I found that because I was a man, I don't even have anything, any help on most of my reflections … but I did find that when I spoke to certain people especially, white male doctors at the time, they never really tried to relate to what I was going through.”

“… when I had endometriosis, right, I wasn't even told I even had it. I found out years later that I had it. Yeah. Nothing was done to help me get through it, I wanted to get pregnant. I already had two children and I could have had a scrape, but nobody told me enough about it and listened to me to, to, to sort it out. And that is one of the things … I don't think I could forgive the NHS for. Because I lost an opportunity to get pregnant, I was bleeding heavily … they're saying was, “oh, you know, take out your womb” and all the rest of it. I didn't. And I'm glad I didn’t ...”

• Participants feel a lack of empowerment to advocate self-health.

“So sometimes I would tell my doctor … sometimes I wouldn't. So, there are times where I used to not tell them about the cream that worked for me as at the time where I felt judged … so I had the bad experience where I've told them I wasn't taking certain medication and they've turned around and said, “well, we know the best. And if you're not taking it in this course, and you're not taking it properly, and this will happen to you”. So it has scared me to the sense where I don't go to them.”

• Female participants’ poor trust in the healthcare system with particular reference to reproductive health and maternity.

“To be honest, it's once happened to me … I didn't recognize why that happened. Like when I gave birth to my second child, I had the C-section and I couldn't carry her or lift her. And I've asked the nurse in the hospital to help me just to lift him … and give her to me to feed her. And she refused. She said, “you stand up on your feet and get her!” And I told her, “if I can, I would never ask you, or I will never allow you to touch my child because you never got a heart”.”

Christine Ekechi, a consultant obstetrician and gynecologist at Imperial College Healthcare NHS Trust in London, noted in an article in Medical News Today in August 2020 that Black women in the UK are negatively affected by racial bias in medicine.

• Participants reverting to self-medication with alternative treatments and culturally-specific, traditional remedies such neuropathy and herbs.

“I’ve started to go more, not holistic, but the natural approach … it’s not just about giving you medication but its also what you eat, how much water you drink is very important as well for good health. So, the holistic side, it's not a one-dimensional thing compared to the pharmaceutical side.”

The initiatives to improve health within marginalised communities, from people within the communities, are referred to as ‘health activism’ (Zoller, 2005; Nelson, 2011; Laverack, 2012 and Morabia, 2016). The ‘collective efficacy’, articulated by Steinmetz-Woods et al. (2017), has occurred in areas such as Brixton.

• Participants doubt GPs’ effectiveness and prefer specialist healthcare professionals. Though some participants still trust their GPs, others reported having felt rushed by their GPs.

“… I've had a GP who doesn't really, he doesn’t even really make eye contact. He’d speak, ask one question, turn away, ‘alright I'll give you this’, you're out in two minutes.”

• Historical mistreatment while engaging with healthcare affects participants' decision-making. Participants reported having concerns around data breaches from the NHS.

“I don't necessarily trust it all because … there have obviously been case studies and studies from the past where, like prescribed medication has things in it, which affects different people, different cultures in different ways. Or like they're injecting Black women, for instance…in one of the other cases, like in the US, they were giving these women injections and actually, they were like, sterilising them.”

Tangible reasons for the mistrust amongst many Black communities can possibly be traced back to morally and ethically questionable instances where Black and minority ethnic peoples were abused through medical research and unethical experimentation (Smedley et al., 2003: 131).

• Participants disclosed medical discrimination in the system.

“…she (a doctor) basically wanted to give me a Prozac. I asked, “why are you giving me Prozac?” She wasn't part of our surgery. She then told me that half of Lewisham is on it so she didn’t see a reason why not to give me!

“They were quicker to tell you about some things that might be hazardous to your health than they would tell a Caucasian person. So they were quicker to say, “oh, go take some depression tablets,” to you as another culture.”

• Social media analysis by Centric in reference to medical scepticism is currently in progress. Centric is currently studying how medical scepticism is being resonated across platforms such as Facebook, Whatsapp, Twitter and Instagram. Samerski (2019) notes that ‘health literacy’ is a social practice based on different sources and forms of knowledge, co-produced within the framework of social relations. Centric has developed a social media framework tool to further decongest and find nuances in these particular phenomena of medical scepticism amongst Black and minority groups.