Embodying community and care: Bedford local group success

In the UK, we have 330 volunteer-driven Parkinson’s local groups. They welcome individuals with Parkinson's, their families, caregivers, and health professionals. Local groups provide a platform and space for sharing experiences and resources, as well as hosting social events and activities.

Sue and Steve's story

We spoke to Sue and Steve, facilitators and members of the Bedford local support group, to find out more about their experience.

‘’Our involvement with Parkinson’s UK started when Steve was diagnosed at the age of 44. We initially focused our efforts on fundraising through adventurous activities such as organised cycle rides across Vietnam and Cambodia, and even a tandem skydive. We have been active contributors to the cause, but at the time, whilst raising a family, this was the extent of our endeavours.

"However, during the pandemic, we saw that our local group could be at risk of closure. It was at this point that we decided to step up and lead the group. We’ve built it up from there, with support of our treasurer, Paul, and our growing band of helpers and volunteers. Along the way, we have always asked our community what they’d like to do and what support they need. We have then utilised this information to shape the programme around their needs.

"The activities are tailored to the varying abilities of our community, ranging from cafe meetups and pub gatherings to more physically engaging activities like bowling, table tennis, aquatic exercises, and even Zoom exercise classes. We’ve formed a strong partnership with our local MS therapy centre and this has further expanded the support available to our local group.

"Recognition of the group’s efforts came in the form of the ‘Community Group Of The Year Award’ from the Bedford Borough Council's sports and physical activity scheme in December 2024. We celebrated this achievement as a collective win for the group, as without them turning up and participating and helping with the activities, they simply could not happen.

"We believe the group has fostered a strong sense of belonging among its members. Examples of this would be people getting together to share transport to events, or chatting regularly on our WhatsApp groups. We always try to give everyone a warm welcome, no matter what stage they are at, or their connection to Parkinson’s.

"We think that with a commitment to helping people affected by Parkinson’s, local groups can be a vital resource to the community.’’

If you’re interested in getting involved in your local group, use our tool to find your nearest one today.