The Invisible Carer

Artwork by Richard Kahwagi. Photo by Melchior Damu on Unsplash

I didn’t see myself as a carer until my late twenties. 1 in 8 adults are carers in the UK- 6.5 million in total. Half a million of those are from Black, Asian and other ethnic minority backgrounds. The NHS England definition of a carer is “anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid. Many carers don’t see themselves as carers and it takes them an average of two years to acknowledge their role as a carer.”

The advocate and clinician I am today is mainly because of my lived experiences navigating NHS services due to my disabled older parents who can’t read, write nor speak English. I understood the access barriers from a young age and the psychological impact carers experience. I can empathise with how vulnerable it can be when you believe the professional’s words and don’t know you can ask for a second opinion nor know how to complain as often that is culturally frowned upon. But Black people die through systemic racism in society, policing, schooling and health and social care. 

How often do NHS services expect Black, Asian and other ethnic minority carer to translate for their family members instead of providing an interpreter and offering them support instead? It is time we start seeing Black people as carers and include them in the picture. Health and social care services and charities need to adapt in-service transcultural approaches in order to achieve equality in accessibility and treatment of care. Black researchers should lead in conducting research and audit the quality of care provided as part of quality improvement.

From the age of fifteen I had to learn English fluently quickly having migrated from Holland where I was studying English at an immediate level. Luckily for me I did pick up the language quickly and became the most fluent in my family hence why I was the one translating for my parents from a young age. Sitting in the GP surgery I learned early that I needed to book 20 minutes appointments even though they were interpreting services available. Lately it has become impossible to book interpreters especially on short notice for GP appointments adding additional stress for carers who are working. Often people don’t want to share their intimate details with strangers as it is often a close-knit community especially when it comes mental health problems due to deep stigmas in the community. Interpreters themselves can become barriers and you can never really tell if they are truly understanding and translating medical terminologies correctly. Hence why I do believe interpreters should be trained and employed by NHS Trusts as part of Inservice transcultural services and giving continuous mandatory training to protect them, patients and carers.

Hospital appointments can be a daunting experience let alone for somebody who is younger or not speaking the language. Dealing with sensitive information and holding space for parents’ worries and whilst trying to be patient. Sometimes I felt like I was the parent and even had to tell my parents to be quiet as otherwise I wouldn’t be able to understand what has been said and concentrate. Taking time off from work to accompany and driving parents to appointments was expected as a daughter culturally. I learned to navigate healthcare systems and it made me in the long run a better practitioner as I keep the carers in mind naturally as part of the triangle of care. On a few rare occasions I did give feedback and criticise how matters were handled. If you don’t speak, they will use your silence as permission. Knowing your rights and complaints procedures is so ever important as Black communities have a poor knowledge of resources available.

In hindsight, despite caring for my parents was stressful and at times annoying for all the responsibilities, it made me more appreciative and knowledgeable. But it made me think why should we rely on carers and not make services accessible? Afterall no communities are “hard to reach”, only services are! Clinicians like myself included can become the barriers when we are not culturally and spiritually competent towards the different intersectionalities the Black community needs. Staff need to acknowledge that they can increase risks when they are not emotionally intelligent, trauma-informed care competent and anti-racist in their approaches.

Majority of carers networks are targeted towards White demographics and don't tailor to Black community’s needs. In London more than 55% of nurses and midwives in London are Black, however there is only one Black NHS CEO in the entirety of London, even fewer Black Executive Directors on NHS boards. Without power sharing and representing a transcultural leadership from top down, there will be no progression and equality in the NHS. We need Black leaders with lived experiences to transform and change-make health and social care services in the UK to become truly inclusive, anti-racist and transculturally sensitive.

In mental health services where I work, there are hardly any Black mental health advocates on the wards who are often employed by charities. Black people are 4x times more likely to be sectioned under Mental Health Act 1983 and often (re)traumatised. Then there are hardly any laymen and doctors on Mental Health Act panels. How many Black Approved Mental Health Professionals (AMHP) are trained and how many represent different Black communities showing wider understanding and intersectionality in lived experiences? How many have lived experience of traumas of sectioning, restraints or as carers?

Anyone can be a carer from any age and many people from Black, Asian and other ethnic minority communities wouldn’t even realise nor acknowledge they were carers as they see their caring act as part of their duties towards their family members. It is a good question to ask and identify Black organisations that can help and provide information leaflets in different languages. But what is even better is employing Black transcultural workers and leaders from top down. We must look after Black carers and support them at work through flexibility and support as they are literally saving the health and social sector millions. Black carers’ voices, health and lives matter!

To find out more about being a carer and the services that can support you visit: https://www.england.nhs.uk/commissioning/comm-carers/carers/