Race Equality in Research - sharing experiences

Parkinson’s can affect anyone, no matter your age, gender or race. Despite this, a lot of what we know and see about the condition reflects the experiences of older people from white European backgrounds.

This is a problem as it can make being diagnosed with Parkinson’s an even more isolating experience for people who don’t see themselves represented in Parkinson’s information and research. It also means people don’t always find the opportunities available to them – not just in terms of support, but also taking part in research.

Our Research Support Network is designed to keep everyone in the Parkinson’s community up to date with research opportunities and events. But when we surveyed the Network in 2021, we found that only 2% of members identified as being from ethnic backgrounds that aren't white.

It was clear that we needed to do more to make the Research Support Network a welcoming and relevant place for people from Black, Asian, Arab and mixed heritage backgrounds. So in 2021, we worked with community groups to set up our first steering group dedicated to improving diversity in Parkinson’s research, the Race Equality in Research steering group.

Anita shared: “I had just turned 49 when I started to notice that I had a problem with my shoulder. To start with, my shoulder was very stiff and I couldn’t move it much. This lasted for a couple of months before I went to see a doctor who diagnosed me with a frozen shoulder. But I started to develop more symptoms so I visited the doctor again.

“I was finally referred to a neurologist. When I saw her, she showed me the scans and diagnosed me with Parkinson’s.”

 “I felt very shocked when I was diagnosed. I also felt scared. I had never known any person who had Parkinson’s.”

Taking time to accept Parkinson’s

“My husband and I started to research how the condition progresses and look at how it would affect my life. I found it very upsetting. I then decided to stop thinking about it and made the choice not to read anything.

“But then during the second COVID-19 lockdown in December 2021, I was visiting my daughter in Hong Kong. Things were feeling really tough and I decided I wanted to do something to make the best of a bad situation. I started researching ways that I could get more involved with the Parkinson’s community, and that’s when I found out about the Race Equality in Research steering group.

“I applied to join this group since I felt that I could add value with my background. I thought if I can help, I should at least try.”

Finding a community

“The Chinese community is very small in the UK. My purpose is to share my feelings about my condition with people suffering with Parkinson’s. At the steering group online meetings we talk about how we can spread the word about Parkinson’s UK, and what Parkinson’s UK can do to be a more welcoming space.

“One opportunity we had through the group was to meet up in London. I had such a warm feeling because we knew one another from meeting online. It was great to see that thoughts were put into action and find those people who want to support.

“It was so nice to meet our Parkinson’s UK staff lead Liz, and to meet other members of the group like Shafaq, who is incredible. At that point I felt I was back to normal, I wasn’t thinking about Parkinson’s. It felt like a work function (but in a good way!).

“It really did start because I was curious, I wanted to know if I could do anything for the community.”

Anita, and other members of the Race Equality in Research steering group, helped us plan what our priorities should be for making sure that Parkinson’s research felt welcoming and accessible for everyone. One of these priorities was to organise community ‘Living well with Parkinson’s’ events that would give people a way to come together, connect and share experiences of how they were living well with Parkinson’s.

Toussaint shared: “Before attending the Brixton event, I didn’t know there was research happening into Parkinson’s. I was still trying to process the diagnosis so taking part in research hadn’t crossed my mind.

“The Brixton event opened my eyes about the benefits that taking part in research could have. Meeting other people with Parkinson’s from my community really helped. I joined the Research Support Network after the meeting.”

Sharing experience in the Research Support Network

"I joined the network to be able to take part in trials and offer myself as a participant. I knew there was underrepresentation from people from Black and other ethnic minorities. I wanted to help make sure new treatments were being tested so they work for everyone in my community. I wanted the opportunity to make a difference.

“Joining the Network gives you the opportunity to share a space with other people going through the same thing.”

“Since joining the Network, I’ve volunteered to be involved in the planning and delivery of an online event series for people affected by Parkinson’s from Black communities. The Brixton event was great but I just attended it. Now, I’m able to input what gets spoken about, when it happens, and what’s important. I’m finding out the process that goes into it and playing a part in the planning - it’s great.

“I’ve connected with another volunteer, Winston, outside the group, which has been nice. Sometimes the planning meetings can be like free therapy sessions. Talking to other people sharing their problems and sharing what works well for them has been really good. Your opinions and ideas are valued. You get to have discussions and meaningful conversations about what you’re going through, which is very helpful.”