The road to improving awareness and diagnosis in Black communities

As part of our ongoing work to tackle health inequalities and delays in diagnosis, we’ve teamed up with the Race Equality Foundation to spread awareness of the symptoms among those at the highest risk of myeloma: black communities. Dunsi Bolarinwa, Senior Pharmacist Haematology at University College London, is one of the many healthcare professionals, patients and families involved in the project. Here she reflects on the importance of putting people with lived experience front and centre, and how, together, we can improve awareness and diagnosis of myeloma in underserved communities.

You are part of the project’s co-production group. Why did you decide to get involved with this work?

You can’t fully understand how people are living with myeloma if you don’t have fair representation or lived experience in the room.

As a Black pharmacist working in the NHS, I really want to do whatever I can to help amplify unheard voices, especially of those of Black people, who are at higher risk of myeloma, and reduce the stigma around having myeloma.

For a disease that affects predominantly Black people, it’s been quite shocking for me to see how little awareness there is within that community and how bad outreach to that community is.

What do you hope the project will achieve?

The focus of the project is to raise awareness of myeloma among underserved populations, especially ethnic minorities, ensure earlier detection and to encourage them to get involved in clinical trials.

I feel like solid tumours are more widely represented in terms of charity and celebrity support, but very few people in the general public have actually heard about myeloma so I’d like to do whatever I can help change that narrative.

The project is also about trying to understand and remove stigma and barriers around cancer as a disease in itself and help people talk about it.

Ultimately, I want better outcomes for people with myeloma and my hope is that this project will improve their quality of life and survival rates.

Why is it important to involve people with lived experience in projects like this?

Because they are the solution to the actual problem. I’m going to loosely translate into English something my grandmother used to say: “Unless you wear my shoes, you don’t know where my toes are pinching”.

It’s really important that we try and put ourselves in other people’s shoes, not just from a cultural point of view, but in terms of expectation. We need to understand and take into account the bigger picture – their faith, family, history.

What are some of the barriers to awareness and how might we overcome some of them?

I know that within some ethnic communities it’s really difficult to talk about cancer as a disease. People may be reluctant to even have any form of treatment because of strong faith, or because of other factors like language barrier.

There are also historical and systemic issues at play – from years and generations of mistrust –which means Black people are still reluctant to be involved in clinical trials and novel treatments and it’s going to take a while to rebuild that trust. It’s not something that can happen overnight.

To get these communities on board you also need to meet them where they are. Now, I understand that as healthcare professionals we’re trying our best, but we need a grassroots-level approach to education, to getting awareness out to these communities and to get them involved. We need to think outside the box, outside the usual signposting in GP surgeries, and try to reach people through non-conventional methods like through church social groups and community groups.

Hopefully, with time, we’ll get there, but we need to ensure that the outreach is directly linked to the people that we’re trying to get on board.

Has anything surprised you or stood out to you while working on this project?

One of the things that’s really surprised me is the lack of consistency in primary care. I’ve met patients who opted to go private just to get a diagnosis and start treatment after going back and forth to their GP because their GP didn’t recognise their non-specific symptoms or understand how it affected their life.

One thing I’ve found encouraging though is speaking to younger patients, 50 years old or below, who have actually gone into a trial at first-line treatment. So we’re hopefully starting to see a generational shift from the older generation being mistrustful of pharma and trials to younger people getting involved in trials.