“Not those leaflets again”
There were wry smiles all around, from myself, an assistant, and the co-director at the Pakistani Community Centre. We had strayed off topic. Our meeting had started formally- at arm’s length discussing a dementia information event and recruiting older South Asians to my research advisory group- but, as is standard when you put two or more Pakistanis in the same room, we were bonding. This time over the bane of South Asian service users’ mental healthcare experiences. Those leaflets.
Know which ones? Government translated copies of NHS or third sector leaflets, often with a woman in a hijab plastered somewhere. Rife with jargon, using complex versions of languages akin to English days of thou and thy, they are brandished by mental healthcare professionals, the majority of whom speak to service users in English. Sometimes there’ll be an interpreter and stilted interaction that doesn’t translate the actual psychological terms, despite 8% of the UK population not having English as a first language, with over 864,000 struggling or unable to speak it. These leaflets are handed over with not much else, toted home and promptly thrown in the bin.
When I spoke to South Asian memory clinic service users, they echoed these exact sentiments about accessing dementia information and help-seeking. These initial interactions with health professionals, psychologists included, was the catalyst to a breakdown of their faith in the healthcare system. Many went on to have no further intervention into their dementia care and management, looked after solely by an exhausted and overwhelmed spouse or child. Some didn’t even get the badly translated leaflets, which are nothing short of a metaphor for the mental healthcare system’s current understanding and response to the popular acronym EDI: Ethnicity, diversity and inclusion.
Being a dementia researcher, I once asked a room of white senior academic mental health professionals what to do about there being no word for dementia in any South Asian language. There was a rousing consensus- let’s make one up! This is rather symptomatic of current attitudes towards EDI- desperate acts to fulfil principles, all while having no idea how.
We know ethnic minorities are not presenting to mental health services at the rate they should be, despite a higher prevalence of mental health difficulties. The onus has been to blame language and cultural barriers, stigma within these groups, the label of “hard-to-reach”. But what about the dwindling representation of these communities in the mental healthcare they are accessing?
No one is more self aware of their representation problem than the collective field of clinical psychology, which has time and again highlighted that we are dominated by a white female populous. The effects of this have produced anecdote after anecdote on the ramifications of this loss of perspective.
When I met the director of Women’s Voices, a mental health organisation that assists female asylum seekers and are seeking volunteers, particularly psychology students and graduates, she had one complaint. “They’re all white. The women don’t know how to speak to them, how to relate, they can’t connect”. It’s a catch-22. All the BAME volunteers had no psychology background, and all the volunteer psychology students were white. This reality of representation has seeped into every aspect of clinical psychology.
My brand of research looks at how cognitive tests for dementia were originally developed for Western populations and little has changed. This means test questions are heavily reliant on a knowledge of Western cultures alone and thus there are higher rates of misdiagnosis and under diagnosis of dementia in ethnic minorities. A direct translation isn’t enough; one cognitive test currently presents the phrase “No ifs ands or buts” as “ifs ands or buts no” in the Urdu version!
Working as an assistant psychologist reflected these problems exist beyond cognitive testing, to assessments and interviews of other mental health difficulties, the very concepts of which are representative of Westernised individualistic cultures. South Asian service users have spoken on how diagnosis and formulations don’t align with their cultures and therapy doesn’t seem to care about who they are. There’s little consideration for the beliefs and practices they hold essential such as prayer and familial consideration. CBT especially has been criticised for being “self-involved” and unrealistic in their cultural contexts. And clinical psychologists are aware of this- many lament the lack of culturally appropriate classifications, tests and interventions.
When assisting in children’s mental health and wellbeing groups I was exposed to this loss of perspective, while colouring with 8 year olds. The pretty blonde girls, like magnets, gravitated to one another while the curly haired black girl remained sequestered in her corner, referred to us because her school couldn’t understand why she wasn’t socialising in her pre-dominantly white class. The young Muslim boy, bullied by other Muslim children, was a dilemma to all involved. This boy who came from a less conservative household was easy pickings for the more religiously brought up children who demonstrated what everyone from those communities already knew- people from within the same culture target one another too, often on the basis of expectations regarding shared roots.
These problems are punctuated by a harsh truth; being informed is not enough. It cannot compensate for physical gestures, turns of phrases and shared beliefs and boundaries that gives those from the same background an instinctual empathy.
While there’s no doubt that clinical psychologists are anxious to address the problems, blanket solutions such as the infamous leaflets are a token gesture. One that can deter people from seeking further help altogether, lest more confusion arise in an already difficult time.
Solutions that actively involve demographics being targeted, which puts these service users and their cultural needs at the forefront, are what’s actually needed. It’s how I got here in the first place- in pursuit of a research advisory group of older South Asians that’ll tell me exactly what is right and wrong with how I’m doing my research and what they’d rather have me do instead.
Leaflets only stretch so far before they tear.
The original version of this article can be found in the June, 2019 issue of Clinical Psychology Forum: Those leaflets
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