The Study

We're looking at the healthcare experiences of Black British and South Asian people living with MS. Historically, a lot of MS research hasn't included people from different ethnic backgrounds. This means that some people might not be getting the help they need for their MS.

We want to really understand some of the problems people from these groups may face, such as getting to use healthcare services, talking with healthcare professionals, and getting clear and helpful health information. We're also interested in how things might have changed for them with the big move to online healthcare because of the pandemic.

Our research is conducted in partnership with people who have MS, who join us as peer researchers. This means they are involved in every step of the research process: from defining what questions we need to ask, to deciding the best ways to reach out to other people with MS, and figuring out how to make sense of the information we gather.

They’ll receive training and be supported to carry out interviews and focus groups, ensuring that the data we collect is meaningful and accurately reflects other people’s experiences. Their firsthand experiences are pivotal in interpreting the data we collect from thorough interviews and group discussions.

Our study aims to explore the patient experience of people with MS from minoritised ethnic backgrounds, particularly those from South Asian and Black communities, with the goal of enhancing their care. To achieve this, we have set the following objectives:

1. Conducting In-Depth Conversations: By facilitating detailed interviews and focus groups with people with MS from Black British and South Asian backgrounds, we aim to collect narratives about their experiences within the healthcare system.

2. Deep Analysis: Our analysis will delve into the collected data to understand the fundamental barriers and facilitators to accessing and utilising healthcare services.

3. Collaborative Solutions: We will work collaboratively with a wide array of stakeholders, including healthcare providers, researchers, and people with MS, to translate our findings into actionable strategies. This will involve co-design workshops where stakeholders can contribute to developing interventions and service models that address the unique needs and challenges identified during our research.

People with MS are not just participants in our study; they are our partners, ensuring that the research is directed by those it intends to serve. This participatory approach allows us to incorporate their lived experiences into our research framework actively. It empowers them to shape the research direction, contribute to the analysis, and help craft the final recommendations and strategies that emerge from our findings.

Our study will be conducted in ethnically diverse areas of London and Yorkshire. Specifically, we will focus on the MS services at The Royal London Hospital (Barts Health NHS Trust), Kings' College Hospital (Lewisham and Greenwich NHS Trust), Leeds Teaching Hospital NHS Trust, and Bradford Teaching Hospital Foundation Trust.

This research study is funded by The Multiple Sclerosis Society which provides support to people living with MS in the UK through funding research, running campaigns and providing a wide range of services.