Advocacy
The NHS Professionals with Parkinson's Group was formed in 2020 to offer peer support for peopel living with Parkinson's. The group has grown to have over 60 people from around the UK. Every year they highlight an important aspect of Parkinson's both inside and outside of the NHS.
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, The Royal College of Emergency Medicine and the Parkinsons's Excellence Network Time Critical Medication has been put on the national agenda.
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.
The text is below
'When I heard those three words, It's Parkinson's Disease. I didn't know whether I would be able to do this.
But I can and I am and I will and I will keep going.
The patients come.
We see, we treat, we investigate, we manage.
We work, we work really hard.
So together we stand, so proud of what we do.
Cautiously aware of our challenges and limitations.
Determined to play our part, using our skills and experience to the full.
In this unyielding world, we are who we are. We get up, we go in and give our care.
Caring for and about is what we do best, because we really know how it feels.
But as time ticks on, so will this disease progress.
Our world will change, our lives will change and so our work may need to change to.
But for now we are truly thankful, thankful to be part of one great team that makes a difference everyday.'
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'.
It is vital that patients on Time Critical Medication get them when they nned them. Any delay and people with Parkinson's will start to wear off and not be able to walk or talk. People with insulin treated diabetes are at risk of developing Diabetic Ketoacidosis. if it continue they all can become critically unwell. So find them, prescribe them. Not just their next dose but all of their Time Critical Medication for the duration of their hospital stay. these medications are critical to maintaining their health and the quality of their life. So whatever ED you work in make sure people on Time Critical Medication are always given them when they need them.
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
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.