Equality, diversity and inclusion: our strategy

Anyone can get Parkinson’s. And evidence suggests where you live and your income impacts the support you’re able to access.

We didn’t have much data on the socioeconomic status of people being supported by our services. However, we knew people living in socioeconomically deprived areas were less likely to connect with Parkinson's UK. From insight into other areas, we assumed this pattern was across all services.

We knew that to reach people from diverse socioeconomic backgrounds, we needed a better understanding of how income, background or geography might affect access to services and support, as well as how able people are to influence and shape services.

By 2026, we want people with Parkinson’s, and the people who love and care for them, to have access to tailored support regardless of their socioeconomic background. 

We have made good progress. Our biggest challenge has been unclear and inconsistent data about people living with Parkinson’s. We have begun to collect information to help us better understand the socioeconomic background of those we support.

We’ve trialled this through some of our services, and we’re now ready to use this approach more widely. This tells us who we’re not reaching and where we need to focus our attention.

To deliver the best support and make breakthroughs in Parkinson’s research, we needed to listen to and involve everyone affected by the condition. And this wasn’t the case.

We knew that 97% of people interested in research were white British. And that responses to Parkinson’s treatment can be different depending on your ethnic background. That’s why we needed to be more representative of the Parkinson’s community in our research.

As well as barriers in research, we knew that our services weren’t reaching minority ethnic communities. Only 4.7% of people engaged with the charity identified as minority ethnic, but we estimated 7.6% of people with Parkinson’s in the UK are from minority ethnic backgrounds. 

By 2026, we’ll have a clear understanding of the background of people living with Parkinson’s in all 4 nations. The demographic of people accessing Parkinson’s UK’s services and support will be representative of the demographics across the community.

We’ve made a lot of progress in our Race Equality in Research programme.

We’ve held events with under-represented communities across the UK and launched an online support group for people from Black, Asian, Arab and Mixed ethnic backgrounds. This gives people a safe space to connect with others, get support, find out how to get involved in Parkinson’s research, and share their stories and perspectives.

We have also changed our research funding processes to encourage researchers we fund to make their studies inclusive and representative of the whole Parkinson’s community.

You can read more about the progress we’re making on our blog.

We know that to be there for everyone living with Parkinson’s, and those who love and care for them, we need a diverse workforce (staff and volunteers) that represents people from all protected characteristics.

In 2021, 20% of job appointments were made to people from ethnic minority backgrounds. And people from minority ethnic backgrounds made up 8% of our leadership roles.

There’s still work to do. We were lacking in data and insight for our volunteer base, only holding data on around 25% of our volunteers. Of those, 91% identified as white. Our volunteer base was also predominantly over 65 years old and female.

9% of our workforce told us they have a disability compared to 20% of the working UK population. 

By 2026, we want to reflect the demographics of the UK population in our workforce. We’ll have a particular focus on specific areas:

• The number of people living with Parkinson’s and people living with disabilities who work at the charity will reflect the working age population.
• At least 14% of our workforce will be from a minority ethnic background, to reflect the demographic of the UK.

We’ll have data on the protected characteristics for around 50% of our volunteers, and use the insight to work with our volunteers towards an inclusive and diverse volunteer base.

Equality, diversity and inclusion training will be a priority for all staff. Managers will drive this.

We want staff and volunteers to feel Parkinson’s UK is an inclusive and supportive place to work. We’ll track this through the People Pulse Survey (a survey of our workforce).

We’ve focused on using fair and equitable processes in our staff recruitment. We’ve taken action to advertise in the right places to attract a diverse range of talent.

We’ve seen a reduced voluntary turnover of staff and increased diversity of our workforce across a range of characteristics, including ethnicity. 14% of colleagues now identify as being from ethnic minorities compared to 12% in 2023.

We have not yet made the same level of progress with our recruitment of volunteers. We don’t yet have consistent and robust data about our volunteers, so we don’t have reliable baseline data nor the evidence to show progress. This is now a focus of our programme to improve our volunteer experience.