Movers & Shakers: Work

This week’s edition of the hot new podcast Movers and Shakers is all about work. We discuss how a Parkinson’s diagnosis affects your job, what your rights are and whether you should tell your colleagues and boss about your condition.

(Movers and Shakers is free to download from Apple Podcasts, Audible, Google Podcasts, Spotify and many other podcast platforms.)

For one week only we introduce another mover and shaker - and one whose working life was turned upside down by Parkinson’s - to guide us through the subject. Guy Monson was a big cheese in the City, running a business managing money for charities, foundations and universities, when he suffered a mental health crisis: “I’d just become the boss when disaster struck. I got the most terrible depression, it was all encompassing, I had to take a substantial time off work. And my bright psychiatrist said ‘I don't think this is all depression, I think there might be a bit of Parkinson's.’”

Initially, Guy kept quiet about his diagnosis, but his symptoms became more obvious in meetings and clients began to ask questions. So he went public “and actually, it was fine.” But he admits that some aspects of carrying on working in finance with Parkinson’s are daunting, particularly if you are taking drugs that can change your behaviour: “If you're handling large amounts of money for often the poorest in society, you've got to be on the ball. So it provokes some quite difficult questions.”

We’ve all had to reassess our working lives since being diagnosed with Parkinson’s. Jeremy Paxman has given up University Challenge and much of his other work, Paul Mayhew-Archer went freelance and “more or less embraced Parkinson’s as my full time job”, touring the country with his one-man show Incurable Optimist.

Like many of us, Gillian Lacey-Solymar found exhaustion was the biggest barrier to carrying on with work. She had to give up her job as a lecturer at UCL. On a Fridays she was doing two lectures and just didn’t have the energy to carry on even though the university supplied her with a chaise longue to relax on in the break: “But frankly, I needed to go to bed, I needed to sleep between them. And that's impossible. I mean, you can't ask your employer to give you a bed, can you? I think they did everything they could.”

Mark Mardell had retired from the BBC before his diagnosis but says the effect of Parkinson’s on his voice and on the speed at which he now types would have made life as a broadcaster very difficult.

The only one of us for whom nothing has changed (yet) is Judge Nick - sorry, Sir Nicholas - Mostyn, but that is because he has been given a lot of support . As soon as he revealed his condition he was sent to see a consultant occupational therapist: “She stated that with the support of an assistant to take notes during court proceedings, and voice activated software, he is able to undertake his required work.”

Nick’s assistant Safia joins us on the show to explain her very exacting role, leaving us all wondering what exactly is left for the judge to do.…

But one thing is absolutely clear - although Parkinson’s has presented us with various challenges, we are all immensely privileged and have had a better experience than most when it comes to navigating the world of work. A survey by Parkinson’s UK found that more than 50% of people don’t tell their employer about their diagnosis because they are too scared of the consequences.

We listen to interviews with two people with rather different experiences of talking about their condition at work. Alison Butt, a health visitor, had no complaints about her employer but found her work, often involving dealing with sensitive safeguarding issues, much too stressful and gave it up. Instead, she started her own business - something usually thought of as a fast route to a heart attack - but says it’s given her freedom and flexibility.

But Janet Kerr, who had retrained as a teacher and was passionate about her job, says her employer was totally unsympathetic when her Parkinson’s diagnosis meant she wanted to go part-time. “I found a pattern that worked for me…and then they changed my shift pattern after a year, and I pleaded with them not to. I said this is working for me, they changed it. And I lasted six weeks, the stress of it was quite traumatic.”

So what are your rights? We lured Peter McRoberts, a leading employment lawyer from Payne Hicks Beach, to the pub to brief us. He tells us that the first thing to work out is whether your symptoms are serious enough for you to qualify as disabled - which can be tricky to assess with a condition like Parkinson’s. But then “if you satisfy the definition, the employer has a positive duty to make reasonable adjustments to offset the disadvantages you have.”

The problem, as we all agree, is having the confidence to open up to both your employer and colleagues about your condition. We movers and shakers are quite a self-assured bunch and prosperous enough not to worry about making ends meet if we can’t work. But we admit to worrying about how our peers will regard us once they know we have a disability - will they whisper behind our backs that we are not really up to it any more?

For the many younger people diagnosed with Parkinson’s, for the self-employed or those with unsympathetic employers, it must be many times worse.

We continue to receive lots of wonderful messages about the podcast. Please keep them coming and let us know which subjects you would like us to cover.

Our email address is feedback@moversandshakerspodcast.com.

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