Engaging the Parkinson’s Community at our Race Equality in Research events
In 2021, we launched our Race Equality in Research project to address the lack of diversity in Parkinson’s research. Find out how we’ve been working on our first priority, collaborating with community groups to build connections and share information.
We know that Parkinson’s research doesn’t currently include representation from all people affected by Parkinson’s. And we can’t stop until it does.
Through our Race Equality in Research project, we’re putting together a plan to address the lack of ethnic diversity in research. We know that around 13% of people with Parkinson’s are from Black, Asian, or minority ethnic backgrounds. But they are not accurately represented in Parkinson’s research as a whole, or in our Research Support Network.
This lack of representation has an impact on all aspects of Parkinson’s research, support and care. If research does not include everyone from the beginning, it’s likely that our current understanding of Parkinson’s is not the full picture. This means that potential treatments and services might not be appropriate for everyone.
Last year, we published a list of priorities, identified by our Race Equality in Research Steering Group. One of the first priorities was for the Parkinson’s UK research team to establish and build networks with underrepresented communities, in a way that benefits everyone.
Read our list of actions and priorities in a previous blog.
Our steering group had emphasised to us the importance of understanding the needs of different ethnic groups. Barriers to taking part in research might look different for people from different communities. So we needed to have an approach that allowed us to understand what specific barriers might be, to work together to address them and encourage more people to engage with research.
We decided we would work towards this by partnering with local groups to hold community information events. In April 2022, we were invited to join an event held at the Peepul Centre in Leicestershire, with members of the South Asian Parkinson’s Community Cafe. Organised by local volunteer, Hema, and Parkinson’s UK Area Development Manager Katie Smith, the Parkinson’s UK Research team came along to share information and resources about getting involved in research.
The event was a great success, thanks to the way that the event was organised. Hema and Katie worked closely with the South Asian Parkinson’s community cafe members to ensure the event was tailored to their needs. There was some great feedback from attendees on the day, with some good conversations between attendees, speakers and the Research team about what taking part in research might involve.
Having identified this as a successful format for events, the Race Equality in Research Steering Group used this to begin planning 3 further events using this structure. The group identified the need for a relaxed atmosphere that would encourage questions and the importance of centring the day around the personal stories and experiences of people with Parkinson’s. It was also key that events were specifically designed to meet the needs of the community, including leaflets in different languages, good food, and accessibility.
The ultimate goal was for the events to normalise talking about Parkinson’s, providing a space for people to meet with others with the condition, and changing the narrative about Parkinson’s to show how people live well with Parkinson’s.
Living Well with Parkinson’s, Hounslow, West London
Led by our Race Equality in Research steering group member Kuhan Pushparatnam, we kicked off with an event developed for South Asian communities in West London. Kuhan used his connections with local support organisation Integrated Neurological Services (INS) to invite local people to join a day of information and experience sharing.
The day included talks from INS and Parkinson’s UK Adviser, Ruhul Ebadi, with information about support available for people with Parkinson’s and their loved ones. There was also a group panel discussion where people shared their experiences of living well with Parkinson’s.
One repeated theme that came across from the discussions on the day was anxiety about sharing a diagnosis with friends and family.
Kuhan said:
"I remember when I told my parents, one of their first reactions was, 'Don't worry, we won't tell anybody', in the hope it would protect me. I feel that a lot of the problems stem from a lack of culturally appropriate information.
"Increasing awareness and understanding of Parkinson's in ethnic communities is an important first step, and then it becomes easier to explain the benefits of becoming involved in research."
Overall, the day had a real positive feel. Attendees were able to have conversations with healthcare providers, research teams and support groups and find out more about what was available for them. As well as having the opportunity to connect with other people with Parkinson’s and their loved ones, sometimes for the first time.
"The event was a gamechanger and opened up my eyes. I’m keen to attend other activities and find community with people with Parkinson’s. This is the first time I have been around other people with Parkinson’s."
Feedback from a West London event attendee.
Having a good mix of stallholders, alongside talks about lived experiences from people living with Parkinson’s, helped bring together a well-considered, informative and inspiring day of community building.
Read more about the event in Kuhan’s blog, Living Well With Parkinson's Day.
Living well with MS, Parkinson’s and Alzheimer’s, Brixton, South London
Following the success of the event in Hounslow, Parkinson’s UK teamed up with the MS Society and Alzheimer’s Society to run a similar event in Brixton. This was aimed at people from Black African and Caribbean backgrounds, and discussed living well with all 3 conditions: Parkinson’s, multiple sclerosis (MS) and dementia.
The event was held at Lambeth Town Hall on a Saturday in March 2023, attracting passers-by and those who had seen advertisements in the area into the hall for information. Stallholders included support groups, neuro physiotherapists, researchers and people from the Parkinson’s, MS and dementia communities.
At the event, Dr Dayne Beccano-Kelly, a Parkinson’s UK funded researcher from Cardiff University, gave a talk about his experience as a Black scientist working in Parkinson’s research. Dayne spoke about his motivations for becoming a researcher, some of the challenges he has experienced, and why he wants to inspire a new generation of Black scientists to enter the field.
There was clear appreciation that the speakers represented the audience. One audience member commented that it made them proud to see Dayne presenting and representing them.
The topic of trust came up a few times over the course of the day, with attendees commenting how a lack of trust in healthcare services due to previous problems had left them feeling unable to connect or seek advice. Hearing real-life experiences from people from Black African and Caribbean backgrounds, such as Race Equality in Research Steering Group member Linda E’s stories about her dad, were really helpful. Linda was able to share stories that people could relate to, and feel seen.
The day was a great opportunity to connect with others, and many attendees left asking for more similar events in the future to help build a sense of community. Others said the event had given them confidence, and that they were leaving with the intention of getting involved in physical activity sessions, or finding new ways to live well with the condition.
Toussaint, who was diagnosed with young-onset Parkinson’s, attended the event in Brixton to find out more about Parkinson’s. He said:
"I found it a fantastic event and something that I look forward to attending again. The amount of information and support available to people like myself living with Parkinson's was truly amazing.
"I met Laura from Neuro Heroes who informed me about the Parkinson's specific exercise programme available. I've since signed up and partake in this on a weekly basis. There are a lot of amazing people working with the Parkinson's community and Parkinson's UK."
Toussaint, event attendee
Looking forward
Feedback from both events so far shows that people have enjoyed having a space to chat with other people from their local community. Creating a relaxed and friendly atmosphere helped people open up and ask questions. It also empowered people to share their own experiences with other members of the Parkinson’s community, sometimes for the first time.
"Thanks for a most informative and fantastic event. I learned and connected so much today. I appreciate it so much."
Feedback from Brixton event attendee.
Our next Race Equality in Research event is already in the works for June 2023 and will take place in Bradford, West Yorkshire. This event will be developed for South Asian communities in the area, and planning is being led by another member of our Race Equality in Research Steering Group, Shafaq Hussain-Ali.
Liz Nash, Research Support Network Manager at Parkinson’s UK, said:
"Our Bradford event planning team has been busy over the past few months, taking learnings from these events to plan something really informative and fun.
Short taster sessions of dance and seated physical activity will be included, as well as the opportunity to chat to local Parkinson's nurses and activity groups. We're all looking forward to the curries on offer at lunch, too!
Overall, we want everyone to feel informed and supported, connected to local activities and research opportunities, so as to be able to live life with Parkinson's to the full. "
Join our Race Equality in Research steering group
We're looking for people with Parkinson's and their family, friends and carers from Black, Asian or Mixed Race background to join this project steering group. Your input and lived experience is key to shaping and guiding this important work.