Your experiences of living with Parkinson's disease

What have people told us?

There is a lack of information being provided to people at the point of being diagnosed, as well as at follow-up appointments.

"I had no idea what to expect from my condition and what I could expect in the future."

People have concerns about access and the frequency of appointments.

"I saw a neurologist in March 2022 received a diagnosis of likely Parkinson’s disease - follow up in 6 to 9 months. No information was given about Parkinson’s other than to notify DVLA and insurance company."

There is a lack of coordinated and holistic care which affects people's overall experience and outcomes.

"Every professional person you see gives you new medications and asks you to 'try this'. There needs to be a feedback service after a month to see if it is working, otherwise it is another 6 months before you can talk to anyone about this."

Download our full report below.

If you've been affected by Parkinson's in any way, please share your feedback with us by completing our online form. Your feedback will be anonymised, so you can't be identified, and then shared with local health and social care services with a view to improving the care people receive.

You can find support for Parkinson's on the Parkinson's UK website.