2024 - my year on Substack
It has been quite a year for me, perhaps the busiest and most productive since I left the BBC in November 2021. In March Movers and Shakers, the podcast about living with Parkinson’s I present with five friends, was named Podcast of the Year by the Broadcasting Press Guild. In June my memoir based on my mother’s vast collection of letters Ruskin Park came out in paperback and in October it was time for Sophie from Romania, the story of our rescue dog who has become a social media sensation, to hit the bookshelves.
In between touring the country promoting both books, I was also called on to give evidence in a fascinating trial which ended in humiliating defeat for a man who claimed he invented Bitcoin and launched legal warfare against anyone who denied that. And throughout the year I was engaged in finding material for this Substack. Much of what I’ve written has been about Parkinson’s but I have also explored wider healthcare issues such as data privacy and the application of AI in the NHS.
Because I answer to just one editor - me - there has also been the odd left field post such as those about my life with Sophie or about the cryptocurrency trial. With subscriber numbers up over 20% this year, the recipe seems to work - but do let me know what you would like me to focus on in 2025.
In the meantime, here is a selection of my favourite posts from this year.
JANUARY
FIVE YEARS WITH PARKINSON’S
As 2024 began I realised that five years had passed since I was given my Parkinson’s diagnosis. This post, after describing the somewhat awkward way the news was broken, goes on to audit those five years concluding that, while my symptoms had worsened, I was nowhere near ready to give up work or let my condition change my lifestyle if not absolutely necessary. As the year ends and the sixth anniversary of my diagnosis approaches I’m a little more fragile, taking ever longer to get dressed in the morning and finding it tougher to extract myself from a car or pick up something I’ve dropped on the floor. But for all that Parkinson’s has taken away, it has given me plenty - new friends, new perspectives and a new focus for my journalism as I try to understand this extraordinarily complex condition and the battle to defeat it.
FEBRUARY
The Battle of Bitcoin
https://rorycellanjones.substack.com/p/the-battle-of-bitcoin?r=jos0j
In February I suffered a major disappointment - my invitation to appear as a witness in a trial at the Royal Courts of Justice was cancelled when lawyers for Craig Wright, the self-proclaimed inventor of Bitcoin declined to cross-examine me over my witness statement. This meant that my written evidence about my 2016 encounter with the Australian computer scientist when he “came out” as Satoshi Nakamoto went unchallenged in the court case - despite the fact that both he and his billionaire backer Calvin Ayre had trashed me and what I had to say in various defamatory social media posts. Here, I go through the complex saga which culminated in an epic court battle between Wright and COPA, a group of Bitcoin developers grown tired of bein g sued by him. In later posts throughout the year I document Wright’s downfall as he suffers defeat after defeat in court, culminating a suspended prison sentence for contempt of court.
MARCH
THE NHS - WE NEED TO TALK
Throughout the year I have been trying to get to grips with the challenges facing the National Health Service and the technology, in particular AI, which might help it deal with them. This post calls on the NHS to face up to one of its biggest failings, its terrible communications, both with patients and between different healthcare professionals. But it also says the public needs to do its part, becoming less paranoid about sharing our medical data or about the involvement of tech companies and other private sector players in healthcare.
APRIL
MOVERS AND SHAKERS: DOWNING STREET
It has been an extraordinary year for the Movers and Shakers podcast, not only winning a major podcast award but, with our Parky Charter, launching a major campaign for better Parkinson’s care. On World Parkinson’s Day in April, we took our Charter and the petition backing it to Downing Street, with the major Parkinson’s charities and dozens of our listeners cheering us on. I write a Substack post to accompany every episode of Movers and Shakers - this one tries to give some of the flavour of a very different edition, recorded on location in Whitehall rather than in our usual haunt, a Notting Hill pub.
MAY
ULTRASOUND - THE FUTURE OF PARKINSON’S?
I am constantly lookout for new technology which could improve healthcare, so when an old friend of Movers and Shakers Professor Ludvic Zrinzo got in touch about a new treatment for Parkinson’s I was eager to hear more. I ended up in an operating theatre at the Queen Square Imaging Centre that felt more like Mission Control for a space shot. I watched as a technique called guided ultrasound was used to impressive effect on a patient with essential tremor. Professor Zrinzo is a passionate advocate for the technique but later in the year in an episode of Movers and Shakers about guided ultrasound we hear from a neurologist who feels it is overhyped/
JUNE
MOVERS AND SHAKERS: WES STREETING
When Mark Mardell fixed for Labour’s Shadow Health Secretary Wes Streeting to come on Movers and Shakers to talk about our Parky Charter we were delighted. When a few weeks later Rishi Sunak called a surprise General Election we assumed Streeting would pull out - after all, a relatively obscure podcast would not be a priority during a high pressure election campaign. But somewhat to our amazement Wes turned up and even made a promise of 62,000 extra neurology appointments a year if Labour were elected. Great stuff - but we will be keeping an eye out in 2025 for any sign that this promise is actually going to be delivered.
JULY
THE NHS - IS AI REALLY THE ANSWER?
Everyone from Tony Blair to the AI Godfather and Nobel Prize winner Geoff Hinton seems convinced that AI is going to transform healthcare. But over the summer I conducted a series of interviews with people at the cutting edge hoping to deliver AI in the NHS. In this post I meet two people with startups focused on what seem like relatively mundane applications of AI - recording a doctor’s conversation with a patient and turning out a letter to a GP, or developing algorithms to predict which patients are like to be hospitalised in the near future. These kind of applications promising more effective management of traffic flows through hospitals may prove more attractive to NHS managers than flasher ideas promising a longer term payoff.
AUGUST
THE MYOPIA EPIDEMIC
Don’t you love it when someone tells you something you didn’t know? When Jude Stern from the International Agency for the Prevention of Blindness told me that 97% of 19 year old male South Korean army conscripts were myopic I was, to coin a phrase, gobsmacked. But she went on to pile fact onto fact to convince me that a generation focused on reading from screens just centimetres from their faces is doing serious damage to its eyesight. But don’t worry, there is a simple solution - just step outside from time to time and stare at the skies!
SEPTEMBER
MOVERS AND SHAKERS:WE WILL SURVIVE
When Gillian Lacey-Solymar started talking about how the Movers and Shakers should make a pop video to promote our Parky Charter I thought she was bonkers. But the result proved her gloriously right and since We Will Survive was released on an unsuspecting world I have shown it at a number of charity sector conferences to great acclaim. This post tells the story of the making of a video which we believe captures the truth about Parkinson’s while also being a jolly good watch. We have further plans for We Will Survive in 2025 so please go on watching it and sharing it with anyone who wants to know a bit more about Parkinson’s.
OCTOBER
EXENATIDE - THE DRUG THAT FAILED
This Substack aims to give you the reader as much positive news as possible about all the new approaches and technological advances which could help to treat Parkinson’s and other conditions. But I don’t shy away from negative news so, having spent a long time hyping up Exenatide as potentially the first disease-modifying drug for Parkinson’s, I could not ignore the total failure of the Phase 3 trial. Since this post was published, the trial’s Principal Investigator Tom Foltynie has given more details about the disappointing results at the Cure Parkinson’s Research Day. But there has been surprisingly little online comment about the failure of Exenatide. My main takeaway is that a clinical trial process which began back in 2008 is far too slow and cumbersome and we need to speed it up.
NOVEMBER
THIS CHARMING GENTLEMAN HAS HAD ENOUGH OF GP LETTERS
This piece, born out of my participation in a webinar about improving written communication by doctors, was amongst the most popular of the year. Perhaps many of us have been the “charming gentleman” or “delightful lady” in those letters from a hospital doctor to a GP and are eager for change. More enlightened doctors have been writing direct to patients, copied to GPs, for twenty years and have coped with developing language that works for both recipients. Now, with the help of AI, this approach could become standard.
DECEMBER
SOPHIE’S SECOND YEAR
At first I was going to choose as my December pick my story about the abandonment of people with Parkinson’s in South Cumbria - apologies by the way to the doctor in North Cumbria who felt that my headline which just spoke of Cumbria was an unjustified slur on those working hard to provide a service in the north of the region.
But then I decided I needed to end the year with the creature who has dominated our lives for a while. These days, if my wife Diane is getting on a plane in Amsterdam or shopping in a supermarket in Cardigan while on holiday and is approached by a stranger she will know that it will be about our Romanian rescue dog Sophie rather than her distinguished career as an economist. Similarly, people come up to me on the street, on crowded trains, even inside the Houses of Parliament, to ask after Sophie.
We don’t mind, we are proud of our beautiful dog and the progress she has made since her early days with us when she spent most of her time behind our sofa. So I am ending with this post which celebrates the second anniversary of Sophie’s arrival in our home.
Let me - and Sophie - wish all of you a Happy New Year. We hope to inform and entertain you with plenty more stories about health and technology in 2025 with just the very occasional excursion into canine affairs.
Sorry John, can’t see it?
Started following you because of Sophie, but find all your information about Parkinson’s and indeed generally your take on tech and the NHS really interesting. Look forward to reading more from you in 2025. Wishing you Diane and Sophie warmest wishes for the new year.