Patient and carer race equality framework: making decisions with communities, not for them

When I first arrived in the UK, 10 years ago, I had no idea what ‘mental health’ meant. As an 18-year old stepping foot in a foreign country, far away from home, I suddenly had to become independent, resilient, and resourceful. Easier said than done.

You can’t leave your identity at the door; it’s interlaced with who you are; a part of you that you embrace but also want to leave behind.

When I stepped off that plane, I was carrying with me my past trauma. I came from a culture that denied the existence of mental health and afforded much more visibility to physical health and illnesses, with an education and health system that stigmatised mental health. As a result, I spent many years of my teenage life without professional, familial, or societal support, at a time when I was trying to find my place in the world and address who I am. I was trying to navigate heteronormative systems and societies in a culture which was also rife with racial conflict and intergenerational racial trauma.

So, when I first got that phone call to assess my eligibility for NHS Talking Therapies in England, and the person asked me “What seems to be the issue?”, my response was: “How much time have you got?”. Sadly, the response is never: “As long as you need”.

Throughout my patient journey, I desperately needed therapists who understood where I was coming from culturally, so I didn’t spend our limited therapy time giving them a crash course on how my ethnicity shapes my needs. When I was too unwell to leave my house, I needed systems which understood why existing ways of therapy did not work for me. I still wonder why I was never offered online therapy, which later became possible during the pandemic. I desperately needed to see therapists who shared parts of my identity, such as people who were young, queer, from an ethnic minority background, or who understood what it feels like to be a man going through mental health challenges – and the stigma that comes with it.

It has been a rarity to use a mental health service which truly saw me as an equal partner in my treatment. This work isn’t just about co-production, it’s also about co-learning: my lived experience makes me an expert by experience. I have things to teach you as my clinical team, just as you have things to teach me as a patient in need.

The Patient and Carer Race Equality Framework (PCREF) brings it all together. We can capitalise on the implementation of the PCREF by shaping it with patients, carers, and local communities. We need to empower communities to educate staff on who they are, what their culture is and how that shapes what they need from you. We need to make decisions with communities, not for them and influence a culture shift where expertise by lived experience is as highly regarded as expertise by profession.

All staff in the NHS can help: be the first person to say something when your recruitment initiatives are perpetuating a lack of diversity; look after the wellbeing of your staff; create opportunities for your staff to progress, to shape the culture of your organisation. And create opportunities for your staff to learn from, and teach, your senior leaders.

To all NHS professionals: thank you for being part of PCREF.

Erk (pronounced Eric, pronouns: he/him/his) is a Turkish Cypriot who came to the UK to pursue higher education. He is an equality, diversity and inclusion practitioner by profession and his academic specialism is inclusive leadership. He is currently on a journey, exploring how impact can be made on others using creative media – blogs, podcasts, presentations, videos, art and more. He works as an expert by experience in NHS England and NHS Improvement’s Mental Health team, embracing, and encouraging others to embrace, vulnerability, equity, dignity in care, patient representation and systems improvement.