Advocacy
Time Critical Medication
Time Critical Medication needs to be given in hospital when the patient usually takes them. on time, every time for the duration of their stay.
Through advocacy work with other Healthcare Professionals with Parkinson's, NHS England, The Royal College of Emergency Medicine and the Parkinsons's Excellence Network Time Critical Medication has been put on the national agenda.
Healthcare Professionals with Parkinson's Group
The Healthcare Professionals with Parkinson's Group was formed in 2020 to offer peer support for people living and working with Parkinson's. The group has grown to have over 85 people from around the UK with some members from Ireland, Norway, Australia and Chile. Every year they highlight an important aspect of Parkinson's both inside and outside of the NHS.
Connecting Through Care: the inside job 2021
First published in 2021 on World Parkinson's Day they describe what it is like working and living with Parkinsons.
The video is in two sections with the second one being dedicated to all who look after us, motivate and encourage as their care enables us to keep caring.
The second part ask what it is like to live and work in healthcare with Parkinson's
All the same but different : 2022
In this film the group describe what their most difficult symptom was. What they each said may just surprise you.
Time Critical Medication 2023
Published in 2023 the focus switched to the importance of time critical medication in hospital for people with Parkinson's'.
Physical activity 2024
Published in 2024 they highlighted the importance of exercise with a few tips in how to keep motivated.
It's hard somedays but I set out my shoes, that helps me to cue, I set my alarm and I don't press snooze.
I get into a habit that repeats and repeats, I picture my neurons being very upbeat.
It's good around as it, helps our movement and our mind. It helps our movement and our PD decline.
It helps our posture and our walking. It helps our mood that keeps us talking.
Who knows what the future holds, but your brain cells are dying. That is very true. how slowly that happens we ain't got a clue.
So can you commit on this April day. To get active and keep, Parkinson's at bay
The NHS prescription Lottery 2025
Published in 2025 we highlighted that despite being a Time Critical Medication people under 60 with Parkinson's have to pay for their prescriptions in England. The group are calling on the UK government to provide them for free.
ADAPTS WELL 2026
Published in 2026, 24 NHS professionals living with Parkinson’s come together in this 3min film highlight the need for better care, have a deeper understanding, and why a sense of hope is key. Through a collaborative script, these healthcare workers transition from providers to patients, highlighting the reality of navigating the system they work within. From the need for easy access to healthcare to the vital role of work adjustments under the Equality Act, they share what it truly means to live with Parkinson's.
World Parkinson's Congress talk 2023
Read the start of Jonny's talk and then watch the rest on YouTube.
‘Four years ago, I travelled to Japan and sat as a delegate in Kyoto to be inspired, encouraged and educated. I consider it a great privilege to be speaking to you this morning though to be honest it’s a little daunting. When I heard that this congress was taking place in Barcelona, I was really looking forward to visiting. This city is full of two things I love, art and architecture, and perhaps the most iconic of all the architectural buildings must be La Sagrada Familia.