Drawing by example. How Parkinson’s awareness is changing in the NHS
I was 41 years old and things seemed to be falling into place. I had been a Consultant in the Emergency Department at Leicester Royal Infirmary since 2009 and things were starting to happen. The Education Team that I led had been shortlisted for an HSJ award, I was 6 months away from completing my Masters in Medical Education and I was the Clinical Lead for Assessment at Leicester Medical School.
Life was busy but something bothered me. I had noticed that when I was typing my left index finger would tremor ever so slightly, I noticed that when I walked I would scuff my left foot and that I was beyond tired, falling asleep on the sofa most evenings even before my 10 and 6-year old children had even gone to bed. It was only when I realised a few weeks later that I couldn’t rotate my left wrist quickly that I knew I needed to go and see my GP. I sat in the neurologist’s office 48hrs later and was so pleased that I had managed to walk the length of the clinic and not scuff my left foot. ‘You don’t swing your arm much he said.’ I hadn’t even noticed, my wife hadn’t, nobody had. He looked directly at me and said ‘Jonny you have Idiopathic Parkinson’s Disease.’ I knew there was something neurologically wrong but Parkinson’s wasn’t on my list.
That was 4 years ago now. The ED education team did win the HSJ award, I completed my Masters, I am still working 12 PAs with reasonable adjustments in place and a Consultant team who have been beyond supportive. When you are diagnosed with a progressive degenerative neurological condition for which there is no cure you wonder how you can take your leadership skills into a different environment, to educate about Parkinson’s, to increase awareness and increase the quality of care of patients in hospital with Parkinson’s. It has been a real challenge, a daily test of strength and perseverance with all that it brings but it has also brought me stability in my work and family life with each week being very structured. I have found my creative side through drawing using an A5 sketchpad and India ink pens. I initially drew the story of my diagnosis through the eyes of my 9-year old daughter, which was a finalist in the 2019 World Parkinson’s Conference in Kyoto, Japan. https://youtu.be/F0WzJWjqcD0.
In October 2019 I launched an NHS campaign in Leicester for staff to wear a blue brain badge on their NHS lanyards in support of patients in hospital with Parkinson’s. This was led by two animated characters I created called Basil Ganglion and Synthia Nuclein. The aim being to highlight that they need their time critical Parkinson’s medication on time every time, whether they are admitted electively or as an emergency, to have an increased chance of getting home as soon as possible. Figures from NHS England showed that in 2018/9 Parkinson’s patients spent an extra 28 500 nights longer in hospital at a cost of £10 million pounds as they did not receive their medications on time. Since the launch over 300 NHS staff have joined.
Having discovered that I could animate to educate I then teamed up with the European Parkinson’s Disease Association to create a series of sketches around the symptoms of Parkinson’s, which they have embedded into educational articles on their website. https://www.epda.eu.com/about-parkinsons/symptoms/. Following on from this the sketches formed an art exhibition called ‘Parkinson’s Portrayed’ which is presently being exhibited in The University Hospitals of Leicester and The Leicester Medical School. https://twitter.com/pdinfocus/status/1190591562075361281?s=20. These sketches are educating the viewer about some of the 40+ symptoms and the complexity of the condition. My hope is that it will start conversations about both the motor and non-motor symptoms so that people have a deeper understanding of what Parkinson’s is and that everyone living with it is different.
The leadership test for me is whether I can get this NHS campaign to a wider audience, convincing NHS staff to wear the blue brain badge and to exhibit the art exhibition in as many NHS trusts and Medical Schools as I can over the next few years. This is where the leaders of the future can help, so who wants to join me.
To obtain a badge NHS staff can join Team Parkinson’s here
Dr Jonny Acheson is an Emergency Medicine Consultant and an Honorary Associate Professor in Medical Education in the Leicester Medical School. @pdinfocus