Running an A&E department while living with Parkinson’s

Jonny has been working as an A&E consultant for 10 years at the Leicester Royal Infirmary. But when he discovered he had Parkinson’s in 2016, he realised he had to change the nature of his duties. Here, he shares his story.

“If you’ve ever been in an A&E department, you’ll know how noisy, chaotic and busy it can be,” explains Jonny. “There’s an awful lot happening and going on. It’s stressful for everyone – patients, families and the people working there. It’s a really overstimulating environment.”

Jonny grew up in Banbridge, Northern Ireland, and had always had an interest in medicine. He graduated from Queens University of Belfast in 1999 and made the move to Leicester in 2004 to specialise in A&E. Jonny qualified as an A&E consultant five years later – a highly-qualified doctor who oversees the care of emergency patients, usually during their first four hours in hospital.

“I always expected I’d end up being a GP in rural Northern Ireland,” he says. “I wouldn’t have believed it if someone had said I’d end up in Leicester, in England, working in emergency care!”

Working long shifts and often throughout the night, being tired and fatigued was just part of the job. But Jonny found himself sometimes falling asleep at his desk while doing office work, or even at the side of the pool when taking his children swimming.

He explains that it was his in-laws who first noticed that something wasn’t quite right.   

“They hadn’t seen me for six months and instantly spotted a change in my personality. It was then I realised something was wrong – I had started scuffing my foot while walking and noticed a tremor in my index finger while typing, and I was constantly – abnormally – tired. But I just didn’t process it at the time.  

“One night my friend Jules and his young daughter came round. She’d been to a Bollywood dance class, so we all decided it would be fun to have a go together. But I couldn’t ‘twist’ my wrist properly, as you’re meant to do. I knew I couldn’t ignore it any longer.”

Jonny and his wife decided he needed to see a doctor himself, something which he admits he rarely used to do. He describes how a sense of fear took over. “As a doctor, you’ve been trained to listen to and ask the patient questions, examine them and then reach a rational, reasoned potential diagnosis. You figure it out like you would the pieces of a jigsaw. But I just couldn’t do this for myself – I couldn’t rationalise or look at it objectively. I knew there was something wrong but didn’t know what.”

Jonny saw his GP and was quickly referred to a neurologist. It was then that Jonny and his wife were given the news that he had idiopathic Parkinson’s. “Those three words,” Jonny adds. “'Idiopathic Parkinson’s Disease'. I just couldn’t get my head round it.”

Reacting in the same methodical way as he was used to doing at work, Jonny decided he would tell his two children first, before researching and learning as much as he could on the condition to educate himself. He did this through watching YouTube videos and reading online articles, which prompted him to join a gym and start a tailored exercise programme to help with his symptoms. He then told other members of his family, and shared what he had learnt with them. “Everyone was shocked and had questions. But information alleviates the fear of the unknown,” he adds.

At the same time, Jonny describes a sense of numbness coming to terms with the diagnosis. “It was tough. I had no idea you could get Parkinson’s at such an early age. I’m indebted to my wife, who gave me so much support going through it – and continues to do so.”

Jonny also spoke to his boss about his diagnosis and decided to take a month off from work, which he explains was becoming difficult to manage.  

I found after treating a critically unwell patient I’d have to take a rest for few minutes. It made my symptoms worse, and I would feel totally wiped out.

“One of the key things you need to run an A&E department is to be able to multitask. In one shift you might have multiple people from a road traffic accident coming in who are seriously injured. Someone else might have a dislocated ankle, who needs sedating. Someone else might come in having a heart attack, have a cardiac arrest and need to be resuscitated. There are so many things going on – so many rapid decisions that need making. It’s the reason why I got into emergency care in the first place – being able to investigate, diagnose, treat and often save someone’s life.

“But it’s also in those high stakes situations where you’re running on pure adrenaline.

“I found after treating a critically unwell patient I’d have to take a rest for few minutes. It made my symptoms worse, and I would feel totally wiped out. It’s hard to think I was doing that right up until my diagnosis, but that is how we are trained as doctors.”

With the continued support of occupational health and his boss, it was agreed that he would no longer work later than 6pm or be ‘on-call’ – meaning that junior doctors or staff couldn’t contact him for urgent support or advice in the middle of the night. But over time the intensity of the job was still too much, with Jonny’s fatigue and the unpredictability of what patients might be arriving next making things almost impossible.

Over the next two years, he slowly stepped back from treating people needing urgent care, until he made the difficult decision to change his work completely in summer 2018. He now works in the A&E observation ward, doing ward rounds and giving advice on non-urgent cases. “This is much easier for so many reasons,” he says. “Everything is planned, I only work mornings, there’s less decision-making, less people to have to interact with, and there’s a set number of patients to review.

“It took a lot of adjustment though. You train for so long, and put in so many hours of clinical practice. It was hard. But ultimately I couldn’t carry out the role as I was expected to anymore.” Since diagnosis Jonny also works for two days a week at the university medical school in Leicester. “The support and understanding I’ve experienced has meant I’ve been able to continue to practice medicine, and I’m very grateful for that,” he adds. 

Embracing the new direction in his career, Jonny has rediscovered a love for a more creative outlet, in the form of sketching cartoons.

“I always drew a bit at school and university, but I hadn’t picked up a pen and sketch pad for nearly 20 years.

“I tweeted something my daughter had said about Parkinson’s, and my friend Matt Eagles, who also has Parkinson’s, encouraged me to draw a picture based on what she said.”

Jonny has since completed a series of sketches with him pictured as an ‘A’ (representing his surname, Acheson), and his daughter as the ‘little a’, and turned it into a short YouTube video. He hopes to draw more cartoons to help educate others on the condition in the future, including students at the medical school he works at. “I find it really therapeutic, and a great way to tell my story of both my work and personal life with Parkinson’s,” he adds.

Watch 'My Dad: his Parkinson's through my 9 year old eyes' below.