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“Parkinson’s UK – 87% of people diagnosed with Parkinson’s experience some form of discrimination”

Parkinson's UK

On Tuesday we were fortunate enough to be invited to a Webinar hosted by Parkinson’s UK to understand more about diversity and inclusion for people with the condition. Unfortunately, many people with Parkinson’s are discriminated against in various ways including day to day life but also specifically in the workplace. The speakers on the panel included: Gary Shaughnessy (Parkinson’s UK Chair of Trustees), Matt Eagles (Founder of Parkylife), Genna Douglas (Younger Parkinson’s Alliance), Hema Reily (Leicester Parkinson’s Café) and Steve Ford (CEO Parkinson’s UK). Throughout the webinar, we were very lucky to hear each experience of either living with the condition or how to approach the subject of talking about the diagnosis of Parkinson’s.

An Insight into their experiences..

Gary spoke around how during his time at Zurich he was having issues with medication after his diagnosis and would require him in meetings to sometimes stand up, walk around and sit down at various points. His colleagues would join him in solidarity by mirroring his actions to make Gary feel more comfortable which it did. He also discussed how this support encouraged a more open and transparent environment to talk about his Parkinson’s with people in the workplace. Following on from Gary, Genna openly shared her experiences of being on maternity leave at the age of 34 and her shocking diagnosis of Parkinson’s. She explained how being a new mum with the diagnosis was incredibly daunting, but luckily she worked at a company with a very strong HR department, who were able to support her through a difficult time by offering flexible working and an open door policy. Matt spoke next about how he was diagnosed at the age of 7 and has lived his life with the condition not allowing anything or anyone to stop him from doing what he wanted to do. He describes how setting up Parkylife – the brighter side of Parkinson’s, was the best thing he’s ever done. Parkylife encourages people to create artwork with the condition and showcase little doses of positivity to the world.

Matt Eagles: “Don’t ever be ashamed of your condition”

Also, Hema openly discussed how she had suffered symptoms for 10 years but never went to her GP until a bad fall. She explains how within the Asian community there is a stigma of going to the doctors for medical treatment but wants to help raise awareness for others in her community, that it is the right thing to do. Hema run’s a café in Leicester for people with Parkinson’s and offers a fantastic support system for those struggling. To conclude the Webinar, Steve Ford the CEO of Parkinson’s UK discusses how at the head office they create a positive working environment for those with the condition and how other employers could do the same:
  • Flexible working hours
  • Regular conversations with managers
  • Open door policy
  • Access to support for employees
  • Having a relaxing workplace environment so people can take themselves away for a short break and recharge
  • Working from home where possible as the commute is the most difficult part for most people with Parkinson’s.

60% of people with Parkinson’s Disease don’t feel supported by their employer

We want to say a massive thank you to Parkinson’s UK for hosting this Webinar and inviting us along. It has allowed us to get more insight on how to help create a suitable workplace for someone with Parkinson’s and the challenges someone might face that we weren’t aware of. It also allowed us to better understand their needs when it comes to Parkinson’s life insurance.