More evidence of inequalities in Parkinson’s care

Every Parkinson’s journey is unique. It can affect people regardless of age, gender, and background, and can look very different from person to person.

We’re here for every Parkinson’s journey. And although it can be difficult for anyone diagnosed with Parkinson’s to access healthcare and support, research shows that people from Black, Asian, Arab and mixed heritage backgrounds are even less likely to receive the support they need. Systemic problems in Parkinson’s research and healthcare have meant that we know less about the condition in people from minority ethnic backgrounds. This means we might not be able to diagnose, monitor or treat people from these backgrounds in the way that everyone deserves.

Read more about ethnicity and Parkinson’s on our research blog.

Three recently published studies, which we have funded or supported, have highlighted some of the gaps that are still faced by people from minority ethnic backgrounds in the UK.

Symptoms and diagnosis

Researchers in East London carried out a study with over 200 people with Parkinson’s who had attended an NHS healthcare check up. They found that people from South Asian and Black backgrounds experienced more severe movement symptoms, compared to people from White backgrounds. Results also showed that people from South Asian and Black backgrounds were more likely to develop thinking and memory problems. 

Read the full results on the npj Parkinson's Disease website.

Support and research opportunities

Two further studies also show how people from minority ethnic backgrounds in the UK are not getting the same support and opportunities as those who are White.

Professor Rimona Weil and her team held focus groups with people from Black communities in London, and found that although they were often keen to take part in research opportunities, barriers such as a lack of trust in the healthcare system, or fear of the stigma associated with Parkinson’s often prevented them from doing so. 

Read the full results on the Journal of Parkinson’s Disease website.

Another team of researchers spoke to members from South Asian communities, and found that difficult experiences with diagnosis and language barriers meant that people were less likely to get access to healthcare, information and research opportunities.

Read the full results on the npj Parkinson’s Disease website.

What does this mean?

Claire Bale, Associate Director of Research, said: "Everyone with Parkinson’s should have access to the care and support options they need, when they need it. Without this, not only do people miss out on what’s available to support them now, but they also don’t get the opportunity to shape how things look in the future.

"Much of what we know about Parkinson’s comes from research involving people from White, European backgrounds. This means that the treatments and support we currently have might not be right for everyone with Parkinson’s. These 3 studies show in different ways how much of a problem that can be: for research, for managing symptoms, and for providing adequate care.

"We’re committed to making sure everyone is represented in Parkinson’s healthcare and research. Through our Race Equality in Research programme, we’re working with dedicated volunteers and making progress to improve representation in research. Through initiatives like this, and studies that are highlighting the barriers we still need to break down, we can make a real impact on Parkinson’s support and future healthcare."

Shafaq, a member of our Race Equality in Research Steering Group, said: "Being involved in the steering group has been a fantastic opportunity to partake in trying to change the diversity of research participants. Through meetings and brainstorming sessions we are putting into place an action plan to increase the awareness and participation amongst different ethnic groups in research.

"I strongly feel that research is key to making further progress in the treatment of Parkinson's - which is why I feel the work of this group is so important."