Sam Freeman Carney, Health Policy and Improvement Lead at Parkinson's UK, explains how critical it is that people with Parkinson’s get their medication on time and how, on World Parkinson’s Day last year, a group of healthcare professionals who live with Parkinson’s themselves decided to take action.
When people with Parkinson’s don’t get their medication on time, it can seriously impact their health. They may not be able to move, get out of bed, swallow, walk or talk.
“While in the hospital, I missed repeated doses of my medication due to a lack of knowledge and understanding of my condition-specific needs. This threw me out of sync completely – it brought on more severe depression, unsteadiness on my feet, and more severe tremors.
“As well as affecting my health, the experience has affected my confidence and makes me terrified of going back into hospital.” Carole, a person with Parkinson’s.
Even a delay in taking medication of 30 minutes can lead to serious health implications for someone living with Parkinson’s. The timing of these medications varies from person to person and often doesn’t correspond with typical medication rounds on hospital wards.
The latest data from the 2022 UK Parkinson’s Audit found only 42% of people with Parkinson’s admitted to hospital always received their medication on time.
Campaign led by health professionals takes off
On World Parkinson’s Day last year, a group of healthcare professionals who live with Parkinson’s themselves decided to take action.
Led by emergency care doctor Jonny Acheson and nurse Clare Addison; the campaign started as a simple idea: doctors, nurses and other healthcare professionals who have Parkinson’s are patients too! And they can work together with their colleagues to improve healthcare services for people with Parkinson’s.
The campaign spanned across social media and emails, where campaigners would share a video with a hospital trust or their CEO. The video talked about how critical it was that people with Parkinson’s get their medication on time, and asked for a pledge of support for the campaign to make sure no one misses another dose.
Each campaigner would follow up on any public pledges or contact with a phone call and an email, reaching out and offering resources, introducing the trusts to Parkinson’s UK and offering a meeting. This work was painstaking and took a long time to find contacts and collect local data. But it paid off! Over 100 chief executives of acute healthcare trusts, regional ambulance services, chief nursing officers and other NHS executives across all four nations have pledged their support.
The campaign has also made strides nationally with an NHS England webinar for nurses on time critical medication planned for 19 April 2023, and a communication raising awareness of the issue from the Chief Nursing Officer for England, Dame Ruth May DBE, to all the Chief Nursing Officers in England.
This year on World Parkinson's Day, Jonny Acheson and Clare Addison will launch the second phase of this campaign with the release of a 10 recommended actions for hospital trusts to take to ensure that people with Parkinson’s get their medication on time.
What can I do?
Discover the information and resources for professionals, to support your work and ensure everyone with Parkinson's in hospitals or care homes gets their medication on time, every time.
The Parkinson's Excellence Network (@ParkinsonsEN) will tweet the video on World Parkinson's Day please to retweet it and share it with colleagues.