For many people with Parkinson’s, dopamine agonist drugs are a vital part of their medication, effectively controlling their symptoms. But for a minority, they have a dangerous side effect, causing impulsive behaviour. That results in anything from excessive gambling to hypersexuality, and in the worst cases that has cost people their marriages or even sent them to prison.

We have covered this before in an early episode of Movers and Shakers, where we met a young couple whose marriage had just about survived, despite the erratic behaviour which saw the wife abandon the marital home and her two children for a while.

We have returned to this subject in this week’s episode of the podcast because a BBC investigation has raised serious issues about whether the drugs companies and doctors provide adequate warnings about the dangers of these dopamine agonists.

We are joined in the pub by the BBC reporter Noel Titheradge who led the investigation. He started with an online story in March last year about women who had been prescribed dopamine agonists, mainly for Restless Leg Syndrome, and been drawn to risky sexual behaviour or manic shopping and gambling.

He was then contacted by hundreds of people, many of them with Parkinson’s, telling similar stories: “the thing that was particularly striking was just the individual human tragedies, the number of people who had had very good, successful lives doing good work, had families, and then in latter life had seen them losing their life savings, and perhaps I think even more devastatingly seeing the opinions of those around them change about them.”

Noel went on to make a podcast Impulsive telling some of these stories and investigating the kind of warnings given by the drug companies. Among those featured in the podcast and joining us in the pub is Freddie Waite who watched his father’s behaviour change radically six years after he was diagnosed with Parkinson’s. “He was a very straight-laced, sensible, frugal guy, very honest and dependable, but everything changed in 2015.” That was when he was prescribed a dopamine agonist, with the dose increased twice over 18 months.

For Freddie the first inkling that something was wrong was when his father became a reckless driver. But it was when he asked his son to lend him some money that the truth emerged. His life savings, around £300,000, had been taken from him in what’s called a romance scam. “He believed that he was in a relationship, and this woman had encouraged him to invest into bogus schemes and had totally cleaned him out.”

These drugs which Mark Mardell, Nick Mostyn and I all take, do come with leaflets describing the side effects. But when I examined the leaflet for the Ropinirole I take each morning I had to read a long way down before there was any mention of impulsive behaviour. First, there were side effects such as nausea which are described as “Very common: may affect more than 1 in 10 people”. Then labelled “Common: may affect up to 1 in 10 people” were hallucinations and feeling dizzy, amongst other things, while side effects listed as “Uncommon: may affect up to 1 in 100 people” included low blood pressure and feeling very sleepy during the day.

But beneath all that there was yet another category “frequency not known: cannot be estimated from the available data” and then this side effect: “inability to resist the impulse, drive or temptation to perform an action that could be harmful to you or others.” The leaflet goes on to mention excessive gambling, an increased sexual drive, uncontrolled spending and binge eating.

Claire Bale from Parkinson’s UK tells us that the charity reckons there is enough data to show that the proportion of people who experience impulsive behaviour as a result of taking dopamine agonists is more like one in five, or what the drugs companies categorise as “very common”.

Nick “the judge” Mostyn, who has become worried by the effect that the dopamine agonist Pramipexole is having on him, examined the leaflet with his drugs and found it still listed impulsive behaviour as an “uncommon” side effect, with fewer than one in a hundred users affected. This despite the BBC alerting the medicines regulator, the MHRA, to the misleading nature of the leaflet.

We invited the MHRA to come on the podcast, but nobody was available. The regulator provided us with this statement. “We’re carrying out a comprehensive assessment of all available information to determine whether any regulatory action is required to help raise further awareness of these risks with patients and healthcare professionals in the UK.” The MHRA also encouraged patients to report any side effects of drugs they had been prescribed to its yellow card scheme.

Freddie Waite alerted his father’s GP to his radical change in behaviour and he underwent cognition tests which showed he did not have dementia. Eventually, he figured out that it was his father’s medication which was the problem and after he contacted his neurologists they took him off the dopamine agonists without causing any physical problems. Freddie says that although his father’s hyper sexuality disappeared, he was a shadow of his former self until he died in 2022.

Gillian Lacey-Solymar reminds us that millions of people take these drugs without any problems and derive great benefits from them. But we all agree that doctors need to make both patients and their carers more aware of the risks involved in taking these drugs. The prime responsibility, however, lies with the pharmaceutical companies to provide clear and accurate warnings that around 1 in 5 people may find that dopamine agonists cause impulsive behaviour which can be very destructive.

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Take five people at various stages of a neurodegenerative condition, transport us five thousand miles across several timezones, leaving us confused about when we should take our medication - and sit back and watch chaos ensue.

But, as you can hear in this week’s episode of Movers and Shakers, we did manage to get our anarchic collective act together and create a podcast about World Parkinson’s Congress in Phoenix, Arizona

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This unique medical conference, where scientists and doctors meet patients (who are, by dint of the fact that they are willing to fly round the world to this event, passionately interested in their own condition) takes place every three years.

In many ways, Phoenix was the ideal location. Because, apart from the convention centre, the downtown area is so devoid of people and activity, it felt as though it should be renamed “Parky Town”. Everywhere you went - the hotel bars, the few restaurants, the short walk between the big hotels and the convention centre - there were “Parkies” walking slowly with a fixed grimace on their faces, spilling half their beer on the bar floor, or blocking up the pavement as they dithered over where to go next. And that was just me.

But that meant there was a culture of patience and acceptance that people don’t always move as fast as you would like or speak as clearly, something often missing out in the real world.

The conference handbook was a weighty tome listing hundreds of lectures, panel debates, and activities, covering every aspect of living with Parkinson’s. We were without our regular producer Nick who is away on paternity leave (congratulations Nick and family) so how on earth would we get a grip on this bewildering, multifaceted event?

Our solution was that each of us would go away, choose a topic or people that interested them and come back with a report lasting five to six minutes. We recorded our interviews using our smartphones which, while not being up to the standard of professional audio equipment, do a pretty good job, but please excuse any audio infelicities you spot.

Nick “Judge” Mostyn kicks us off with reflections on the opening ceremony and the song “You’re not alone” which really sums up the key message of World Parkinson’s Congress. It was performed by a choir which had been rehearsing online for months and met for the first time in Phoenix the day before the ceremony.

The judge got talking to Janet Shipton, a choir member who is also one of the people who chose “You’re not alone’ from nearly 60 songs submitted for the ceremony. Janet suggested Nick should join the choir and so he found himself on stage on Sunday evening, under the direction of Judith Spencer, the musical director. Nick interviews both Janet and Judith and what comes through is the healing power of music for many people withParkinson’s..

Mark Mardell also takes inspiration from the opening ceremony but he focuses on the dance performance, Knots and Threads, which featured a range of people with Parkinson’s, some of them in wheelchairs with their caregivers part of the performance. He talks to Pamela Quinn, the choreographer of the piece, who was diagnosed with Parkinson’s twenty years ago. “Everybody’s somebody.,” she says when asked about what people in wheelchairs can bring to a dance performance.

I came to Phoenix with one question on my mind - just when are we going to hear about the first disease-modifying treatment for Parkinson’s? I asked three “civilians” - people from outside the medical and scientific communities - for their views and got some pretty well-informed answers, with talk of gene editing and the likelihood that we will need different drugs for different groups. Then I spoke to Professor Matt Farrer, the British geneticist based in the US, who is something of a controversialist.

His message is that we’re doing everything wrong at the moment: “I don’t think people are focused on the things that matter, to be honest, but it’s my personal opinion, and that might come across as a little offensive, but I really don’t think the attention and effort and funding is being spent on the right things.”

He wants more focus on understanding the mechanism of Parkinson’s and suggests too many drug trials are just expensive shots in the dark. He is also not convinced that getting more and more data is proving productive. .“I think we’ve got to think about the data we’ve actually got and integrate it into a more holistic understanding of the disease.”

Gillian Lacey-Solymar is our real WPC veteran - she was in Kyoto in 2019 and in Barcelona in 2023. She says she had not seen a standing ovation like the one given in Kyoto to Shinya Yamanaka, the Nobel Prize winning gene therapy pioneer, until she saw Annalien Oosterbaan speak this week. Annalien is a Dutch gynaecologist who was diagnosed with Parkinson’s 10 years ago at the age of 33 and she proved an inspiration to the audience in the main hall.

Perhaps that was because she remains optimistic that a cure will be found, despite finding that neurologists at the event were not that hopeful. “The puzzle is not complete yet with Parkinson’s, but everyone is working on a tiny part of it, and one day just everything will come together, and we’ll just have the answer, and I’m sure it’ll be within 10 years,. It must be!”

Paul Mayhew-Archer interviews two contrasting visitors to World Parkinson’s Congress, Monique who liked her visit to the Barcelona event so much that she became an ambassador for the Phoenix Congress, and Sean who is just two years into his Parkinson’s experience and says he has learned a lot in Phoenix.

But Sean has a fantastic tale which could. serve as a metaphor for the conference. He was trying to get to sleep in his hotel when he became convinced there was a bat in the room.. He kept going on about the bat until his ingenious wife turned on the light and a little while later had the situation under control:

“She told me she had caught the bat, and the bat was no more, and so I just went back to sleep.”

Obviously the Parkinson’s community needs to find the bat, however unlikely that might seem, and kill it. Paul very nearly did not make it to Phoenix. He rang me on the Friday afternoon before our Saturday flight and told me he wasn’t coming because he’d had another fall. He was afraid that if he hurt himself in America, he would run up a huge bill. But then he realised that if anything went wrong 4,000 of the world’s biggest Parkinson’s experts would be on hand to help ”But nothing has gone wrong, it’s been wonderful, and I wouldn’t have missed it for the world.”

We have returned from Arizona exhausted but also invigorated after meeting Movers and Shakers listeners from around the world. The next World Parkinson’s Congress is in Quebec City in Canada in 2029. So here’s the deal Parkinson’s researchers - find a disease modifying drug by then and we will meet for a massive party in Quebec.

What makes this event so unique is the mixture of people - not only the leading lights of Parkinson’s research and the charities which support them but “Parkies” from 67 countries giving their own insights. World Parkinson’s Congress, which takes place every three years ,is a chance for the scientists and doctors, who at any other medical conference would be talking to themselves, to face sometimes robust questioning from people who are impatient for progress.

But above all, it is the most friendly and welcoming conference I have ever attended. The city of Phoenix has been well briefed on what to expect from a crowd of people whose symptoms can be brutal but unpredictable. So when my colleague Paul Mayhew-Archer froze trying to cross the road or get out of a lift in the hotel there was no drama, just some space for him to wait and try again. Mind you, his freeze did seem well-timed - he had just offered to buy me a drink.

The tone was set in Sunday evening’s opening ceremony. It began with a song , “You’re not alone’, sung by a Parkinson’s choir who had rehearsed for weeks online and met in person for the first time the day before. There was a dance performance by a troupe made up of every variety of “Parky”, some in wheelchairs. There were celebs on video wishing us well, with Dame Julie Andrews a source of particular delight to we Movers and Shakers. And there were speeches, mercifully none of them too long.

Then, as we emerged to make our way to a reception on the exhibition floor, we were greeted by a phalanx of green t-shirted volunteers who had. lined up to cheer and applaud us.

The man in charge of the whole event is Professor Roger Barker, who has spent three decades pioneering cell replacement therapy at Cambridge University. Roger is both a great communicator and a very upbeat character and in his speech at the opening ceremony he was determined to accentuate the positive:

“We find ourselves living in very exciting times. We have major investments in discovering what fundamentally goes wrong in Parkinson’s disease, for initiatives such as aligning science across Parkinson’s, GP2 . We have major pharma investment in all sorts of new therapies, and your voice is now informing research and trials like never before.”

What he did not mention is that there has been disappointing news over recent. days, with failures of two more clinical trials of drugs that were supposed to be disease modifying. That unbroken record of failure to find a drug that slows, stops or reverses Parkinson’s is getting worrying and I will be asking scientists here whether a breakthrough is, as ever, still at least five years away.

Sill, there is plenty to get your teeth into here. I have just emerged from sessions on digital sensors to measure Parkinson’s symptoms, and AI and big data and now my head is spinning. Better go and have another look at those quilts or play a game of ping pong…

For a long time we have talked about doing an episode of the Movers and Shakers podcast about gardening. For many people living with Parkinson’s their gardens continue to play an important role in their lives, whether as a place of calm and relaxation or of the kind of vigorous exercise we are told we need to keep our symptoms under control.

So when an invitation arrived from a company called Harkness Roses to come to the greatest horticultural event of the year, the RHS Chelsea Flower Show, we leaped at the chance to record an episode of the podcast there. The rose grower had invited us because they had been given the task of creating a flower that would bear the name Parkinson’s Resilience and would be part of a very special garden.

The TV gardening presenter Arit Anderson, whose sister has Parkinson’s, had taken up the challenge of designing a show garden for Parkinson’s UK which had something to say about the condition which afflicts 166,000 people in the UK.

Philip Harkness, the fifth generation of his family to have run the business since it was started in Yorkshire in 1879, told us about the rose that he had chosen for the garden:”One of the features, which we were asked for, was to provide one that had no perfume, because one of the early signs of Parkinson’s is obviously losing your sense of smell.”

When we left Harkness Roses in the show’s big marquee and headed out to the show gardens we found the biggest crowds clustered around the Parkinson’s UK exhibit. The most striking feature of the garden was a kind of handrail with a channel cut in it - a rill - carrying a stream winding its way through the flowers.

While the creative force behind the garden was Arit Anderson, she had recruited 15 members of the Parkinson’s community to come up with ideas. One of these Head Gardeners, as they were called, was David, and he showed us around. He explained the thinking behind the rill was connected with one of the most distressing Parkinson’s symptoms, one which has affected him: “The sound of running water is life, but this has got a specific reason for people who freeze - the running water, the sound of it, and maybe the touch of it, is thought to maybe help people break out of that cycle.”

Another symptom which affects David - and the three of us movers and shakers - is insomnia and so there was a night garden, planted with white flowers, with a wooden canopy where wakeful Parkies could come and relax in the small hours.

“The idea of this shelter is that it’s a safe space at night time, where people have got that claustrophobic feeling of being stuck in four walls, insomniac, and they can come out and be somewhere safe.”

David was a keen gardener before he was diagnosed with Parkinson’s. We asked. him whether the diagnosis had changed his gardening: “It’s become more of my life because the world has got smaller over time. My job was to travel the world, and as Parkinson’s took hold, I travel less, and so my connection with the world is actually through my garden, and so it’s become a lot more important to me. ‘

Another Head Gardener was an old friend of the podcast, Anna Edwards. Gillian Lacey-Solymar caught up with her, away from the show, and asked her about the experience of working as a group of gardeners.

“This wasn’t just sort of, oh, we’ll talk to them for 20 minutes and then we’ve ticked a box here. This was real proper involvement,” she said. ”We’ve worked incredibly well together as a group ,with the designer, with people from Parkinson’s UK, and it’s just been such a joyful process from beginning to end.”

Caroline Rassell, the Chief Executive of Parkinson’s UK told us that the garden had been more than two years in the making and had a clear purpose. “The story for me is the fact that through beauty and through flowers, you can tell a really important story about the hidden symptoms of Parkinson’s.”.

It was a story that obviously spoke to the thousands who saw the garden at the Chelsea Flower Show or on television because it won the BBC People’s Choice award, voted for by the public, as the best show garden.

And the garden doesn’t die once the show is over. It is now going to be transferred to the grounds of the John Radcliffe Hospital in Oxford for patients to enjoy.

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I wrote recently about the problems I had communicating with a hospital and my GP and how the surgery’s new AI receptionist EMMA was not helping. Well, now there has been a major development. Poor EMMA has been given two months’ notice. It’s really not my fault - here’s how it happened.

The Gordon House surgery in West London responded positively when I got in touch saying I wanted to get their side of the story - though I had to use an online patient contact form to bypass EMMA.

I then had a call with a senior GP and the practice manager, followed by a visit to see the reception team in action and ask some questions. What I learned was just how much pressure there is on a busy London practice and how sometimes AI is not the answer, not yet at least.

In my phone call with senior GP Dr. Ravi Ramanathan and the Gordon House practice manager, Fionnuala O’Donnell, it was a tremendous relief to find myself talking to real human beings in a dialogue where I could respond, not just listen. Dr Ramanathan admitted that communication between GPs and hospitals had got more difficult in recent years, perhaps because of the added pressures both faced. He then turned to my frustration with the surgery’s use of AI receptionist EMMA:”To be honest, we are a little bit frustrated as well, because it’s not functioning to the extent that we expected it to function.”

But EMMA was desperately needed - the receptionists were fielding 350 to 400 calls a day and were “under tremendous pressure and stress.” While they had several receptionists who had been with the practice for many years, recruiting and retaining new ones had become very difficult.

Fionnuala O’Donnell told me “since July last year, we’ve lost five out of six receptionists that we’ve recruited.” Training a new receptionist in what is quite a stressful job took six to eight weeks, so the pressure kept on building, especially as the government had decreed that patients should not have to wait more than ten minutes for an answer to a phone call.

EMMA seemed to sort that out quickly - “she” picked up straight away, whether you called at the peak hour of 8am on Monday or mid-afternoon on a Wednesday. What I did not really appreciate until I visited the surgery to see the system in action was how limited the AI receptionist’s role was. She was only available in the surgery’s opening hours, and she certainly was not triaging calls - deciding how urgently a patient needed seeing. Dr. Ramanathan said he didn’t think any AI tool was up to that job just yet.” It might be the case in maybe three to five years time, but not right now.’

In fact, all that EMMA did was put the same questions that are asked in the practice’s online consultation form, which patients can fill in to get an appointment, and then record their answers. When the receptionists started work at 8 am, instead of answering phones they would monitor the EMMA inbox and start fixing appointments. I watched as a senior receptionist read through the transcript of a call from a man in his late 70s, decided he needed seeing relatively soon, called him, and fixed an appointment a couple of days later.

At first, EMMA seemed to be helping. The 8am rush, which saw 25 people calling on the dot of 8 and each having a five-minute phone call and clogging up the system, came to an end. But quickly, the limitations of what was effectively just a transcription service became apparent. First, it wasn’t even very good at transcription.”So, for example, we had a patient whose first name was Peter, and it came through as ”Pizza”, Fionnuala explained. What is more, it did not ask any follow up questions.” If the patient said, ‘I need medication’, it wouldn’t then say, ‘which medication do you need?’ So we just got a questionnaire that said, ‘I want medication’. So then we needed to contact the patient to find out which medication it was”.

But it was the reaction of patients that really made the practice think again: “As we used it, more and more patients got frustrated with it and basically said, ‘I don’t want to speak to you! I don’t want to speak to you! I don’t want to speak to you!’” They learned the trick of forcing EMMA to send them to a real human receptionist. “Then the queues built back up again.” And not just on the phones. People began turning up at the surgery on the off chance they could get an appointment.

I learned on my arrival at the surgery that a decision had been made - this was an experiment that had failed. The Gordon House practice had told the suppliers of EMMA that they were going to trigger a break clause in two months’ time and stop using the AI receptionist. The doctors insist they did plenty of due diligence before spending their money on what is a not inexpensive system. They talked to other major GP practices which had had success with Emma, set up a trial phone number to test her capabilities, and put staff through plenty of training.

So what happens next? Well, a few lessons have been learned, notably the importance of promoting the online consultation form which patients can use instead of a phone call to request an appointment. This was buried so far down the website that I had only recently discovered it when I couldn’t get through on the phone. Now it’s the first thing you see on the site.

The surgery is also keen to get as many patients as possible using the NHS app as a one-stop shop for all their engagements with the health service. There will always be people who can’t cope with the new technology, but the aim is to give the receptionists time to talk to them rather than spending hours on the phone with patients who could have gone online.

Dr Ramanathan is keen to stress that the surgery is still enthusiastic about AI. The GPs have been using a system which listens to appointments and then provides an account of what was said. He says it has been saving the doctors as much as an hour a day: “It’s been incredible. It’s actually a game changer.”

But when it comes to AI chatbots, the doctors have learned to proceed with caution. People may tolerate the idea of talking to a computer when booking a holiday or motor insurance but discussing something as personal as your health is quite a different matter.

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Movers and Shakers, the award-winning podcast about living with Parkinson’s, is back for a new series. And, as if to emphasise how determined we are to be fit for the challenges ahead, we start with some vigorous exercise.

Last Sunday we spent the day at the Try-Athlon, an event where the Parkinson’s community is invited to come along to the Stoop rugby ground in South West London and try out a whole range of sports. It was the fifth time Sport Parkinson’s had organised this gathering and it attracted a healthy crowd on a chilly day.

On the pitch, visitors could try all sorts of walking sports: football, netball, cricket, and rugby. Tennis, golf and, er, fly-fishing were all on offer. Indoors, visitors could choose table-tennis, boxing, judo or rowing. Two great organisations, Neuro Heroes and English National Ballet, took us through dance and exercise routines.

The Movers and Shakers had come along not as spectators but to take part. The fittest among us, the skiing, golfing, horse-riding Judge Mostyn, flung himself at a new sport, pickleball. As ever, he was an enthusiast: “The balls are very soft, and so we had very long rallies, and everybody’s entering into the spirit of things and demonstrating that it’s through exercise that we keep this wretched disease at bay!”

Gillian Lacey-Solymar turned instructor, taking charge of the pingpong tables and putting us through our paces. Gillian took up table tennis just a couple of years ago and has had extraordinary success, winning medals at international Parkinson’s tournaments. And as Mark Mardell pointed out, the sport seems to have a magical effect on her. She arrived at the Stoop barely able to move in one of her not-infrequent freezing episodes. “You wouldn’t guess she had Parkinson’s. She’s moving really fluidly, totally normally. I can’t believe the same woman was just frozen to the spot here.”

While Mark is a self-confessed sportsphobe, he is just as aware as the rest of us that exercise is the only thing to have been shown to slow the progression of Parkinson’s. But his thing is not chasing after a ball but stretching himself in different ways, so he was an enthusiastic participant in the ballet class. Afterwards Kate Harley Stephens from English National Ballet described the impact of the Dance for Parkinson’s classes:

“What we witness on a daily basis is really a transformation when people come into the studio exhibiting their symptoms, their tremors, sometimes struggling to walk, struggling to speak, and I think it’s just transformative, the impact that movement and music together can have on the disease.”

While pondering which sport I should choose, I spotted a familiar face chucking a rugby ball around. It was former British Lion and Scottish international rugby player Gavin Hastings. So I went and took part in a surprisingly energetic game of walking rugby. Besides the fact that you can only pass the ball backwards and no physical contact is allowed I was not entirely sure of the rules - but a 10 year old girl, the daughter of a “Parky”, kept darting through our able-bodied opponents’ lines and scoring tries.

At my age and with a sporting pedigree which includes being pole-axed by a giant PE teacher demonstrating the art of the tackle on my first day of school rugby training, I celebrate any minor triumph. So when Gavin Hastings passed to me, and I caught it and plunged over the try line, I punched the air to mark a rare try for Wales.

In a break from playing, Gavin told me that his wife Diane had been diagnosed with Young Onset Parkinson’s nearly 25 years ago, and he had been fundraising ever since. His greatest feat was climbing Kilimanjaro and raising nearly a quarter of a million pounds for Parkinson’s charities.

Once we had completed our various sporting missions, we got together with the co-founder of Sport Parkinson’s Garen Williams who told us what this event was all about:

“There are three things that kill people with Parkinson’s - inactivity, boredom and self isolation. And if you can get away from that and come to events like the triathlon or the walking football tournament that we put on, it gets people socialising, gets them out of the house and gets them exercising and gets them to meet other people of the community.”

And, for all the talk of sport being good for you, Gillian felt we should not lose sight of one thing: “It’s really fun!”

Don’t forget our big campaign which is going to run all the way to World Parkinson’s Day 2027 - it is all about the voice. A weaker voice is one of the most debilitating symptoms of Parkinson’s, yet one which is little known. We want to show we can raise our voices, both literally and figuratively, and we are inviting you to send in video clips of choirs, poetry readings, karaoke - anything which involves using your voice. Learn more at moversandshakerspodcast.com.

It is hardly a radical idea - a simple digital record of your health history, with details of all previous and current illnesses, your medication and allergies. What is remarkable about the Single Patient Record, which should feature in legislative plans unveiled in the King’s Speech, is that it has taken this long for it to arrive.

The case for gathering the information kept by your GP and any hospitals where you have been treated and putting it in one digital file, available to you the patient and to any health professionals who treat you, seems unanswerable.

First, it should save time and money. Anyone with a long-term health condition will know that weary feeling when a nurse in A&E or a new doctor at your GP surgery asks about your medical history. Can’t they just look at your record, you wonder, as you trot through your various conditions. As someone with a variety of health problems involving interactions with several hospitals and my GP, I would love it if they could all talk to each other and share information, rather than it being locked away in different places..

After an appointment with my neurologist at Charing Cross Hospital, he should be able to update my medical record so that any new information is instantly available to my GP. Similarly, when I visit Moorfields Eye Hospital where I was diagnosed with a malignant melanoma behind my left eye more than 20 years ago, my GP surgery should simply get an alert about any new developments. (My tumour was treated with radiotherapy in 2005 and proton beam therapy in 2019 but every eight months Moorfields calls me in to check that it is still dormant.)

And it wouldn’t be a bad idea if my neurologist could be aware of my eye problems and my opthalmologist could get an update on the progress of my Parkinson’s. Instead, the hospital doctors each have to sit down and write a long email to my GP after each appointment. This is one area where AI is helping by recording appointments and drafting those GP emails but for both doctors and patients having all the information in one place would be extremely useful

Perhaps a bit of centralisation could also persuade hospitals to collaborate better, so that the issue with clashing appointments I have faced this week becomes less common. As a precautionary measure, the Moorfields doctors send me for an MRI scan every year to make sure there is no sign of the cancer spreading to my liver or other organs. But the scan is carried out at University College Hospital and this year they scheduled it for 9am on the very day that I had in my diary a 10am appointment for my check up at Moorfields. Very late in the day I realised that even though the two hospitals are only a couple of miles apart I risked being late for my Moorfields appointment, so I cancelled the MRI scan.

A Single Patient Record would not solve all of the many communication problems in the NHS but it would send a powerful signal that a fragmented health service needs to wise up and put patients first.

Bringing together hospital and GP data should not only make treating patients more efficient, it should improve outcomes. If someone arrives in A&E with a life-threatening condition, speedy access to that individual’s health record, perhaps via the NHS app on their phone, could be the difference between life and death.

And in the longer term, the vast data pool that a standardised patient record could create should help medical researchers as they seek to understand, and then to cure a whole range of diseases. But, as ever, a dark cloud hangs over a project that seems like a no-brainer. Concerns about privacy and who should be responsible for the security of patient data have been raised by GPs.

The legislation is likely to call for the Department of Health and Social Care to become the Data Controller, ultimately responsible for the security of health records, rather than that role staying in the hands of doctors. That hasn’t impressed the British Medical Association’s GPs committee. It has warned that taking away control from GPs poses a risk to patient confidentiality and trust in the system.

This kind of argument has been used to block all sorts of initiatives around sharing patient data, and mostly it makes me very cross. There is always a risk involved in any ambitious project like this, but the BMA never seems to worry about the risk to patients and the health service of sticking with the status quo.

But I do have some sympathy with one concern of many GPs, which is the role of the American AI giant Palantir in various NHS data projects. This week, the Financial Times reported that NHS England had granted staff from companies including Palantir ‘unlimited access’ to identifiable patient data while working on the new Federated Data Platform.

The FT quotes a document written by a senior NHS data official warning that if such access is granted there is a “risk of loss of public confidence” when it comes to “safeguarding patient data and ensuring appropriate use and access to it.” Whatever the merits of its work with the NHS - and there is fierce disagreement about that amongst health service data professionals - Palantir has shown by its actions in the United States that it is no respecter of the rights of citizens when it comes to their own data.

The Single Patient Record has the capacity to transform our relationship with the NHS but its success depends on maintaining that public confidence in the security of our health data. So the government - whoever that may be over the coming months - should ask itself whether sticking with a company that threatens to undermine that trust is really such a sensible idea.

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For the past eight months I have been trying to get to grips with the science of Parkinson’s as I am writing a book about the quest for a cure and the role that AI could play. For an arts graduate who took no science courses after the age of 16, that has meant getting my head round some very advanced biology, chemistry and. computer science.

But one subject I steered clear of for a long time was genetics. It seemed, frankly, way too hard and anyway, I kidded myself, genetics was a factor in only 15% of Parkinson’s cases, so it couldn’t be that important could it?

It was a conversation with a brilliant British geneticist who has lived in the United States and Canada for the last 25 years, which changed my mind. “Figure out how Parkinson’s works and we might have a hope of fixing it, ” Matt Farrer told me. Matt has been a professor of neuroscience, neurology and medical genetics at a number of top medical schools, latterly at the University of Florida.

He got in touch after a patient told him about an article I had written about why things were going so slowly in the quest for a cure. “She said you should read this, and you should get in touch with Rory,” he said. “She knows I have a problem communicating in a way that the average person can can understand.”

He was eager, however, to teach me about genetics because he had a mission - he wanted the research community and the wider world to take seriously the work he had been doing and he felt that I could translate him to “the average person”.

He was certain the route to a cure would only come through genetics and a wider understanding of evolutionary biology. Matt told me that his philosophy could be summed up in a phrase coined in the 1970s by the evolutionary biologist Theodosius Dobzhansky - “nothing in biology can be understood except in the light of evolution.”

It is really only in the last 25 years that scientists have made big leaps forward in discovering genetic mutations linked to Parkinson’s and Matt Farrer has played an important role in that.

Up until our discussion, my view of the role of genetics had been coloured by my difficult experience trying to get on the ambroxol clinical trial. Ambroxol was a cough medicine, which researchers had shown as far back as 2009 could help treat Parkinson’s by boosting levels of an enzyme called GCase which helped clear out waste from cells. Getting on the trial, however, involved registering with an organisation called PD Frontline which would send you a genetic test kit.

The trial was looking to enrol 50% of its participants from people with the GBA1 gene mutation, the most common genetic risk factor for Parkinson’s, and one associated with controlling that GCase enzyme. But the other 50% would be made up of people like me with idiopathic Parkinson’s diagnoses. I signed up with PD Frontline and told them that I did not need the kit - I had already been genetically tested at Charing Cross Hospital and did not have the GBA1 gene mutation or any other gene linked to Parkinson’s. Sorry, came the reply, our test is far more sophisticated and you are going to have to take it to get on the trial.

After a certain amount of harrumphing I got the home kit, did a swab of the inside of my mouth and sent it back. At which point I got a reply thanking me but warning that it would take as long as a year to get my results. Apparently, it was a very complex process, and PD Frontline was short of funding. But this appeared to me to be totally unsatisfactory and to reflect all that was wrong with the clinical trials process.

At the time of writing, a year has passed and I still have not got my results, but in any case I am now excluded from trying out ambroxol because you can’t be on two trials at once and I had managed very speedily to get on the ACT-PD trial. I also asked myself what was the point in focusing trials on the minority of people whose Parkinson’s had a genetic cause rather than searching for drugs that worked for everyone?

So when my conversation with Matt Farrer began, that was one of the first things I asked him - why had he devoted his career to what seemed like a blind alley? He admitted that this was exactly what many of his older colleagues had said to him when thirty years ago he decided to pursue this path. And he had even doubted himself: ”I thought to myself, when I first started on this 30 years ago, that this might be a fantasy of mine.” He had asked himself what on earth would a young onset patient with Parkinson’s caused by a rare genetic mutation have in common with a classic case of idiopathic Parkinson’s in a 70 year old man.

But he said studying familial Parkinson’s, where a genetic mutation has seen the disease handed down through the generations, had convinced him that he had found a common mechanism that goes some way to explaining all forms of the condition. He believed that much of the received wisdom about Parkinson’s was on the wrong track and it was through genetics and evolutionary biology that the path to a cure lay: “Once we figure out what’s broken, we can fix it.”

Professor Farrer and his team identified a gene called LRRK2 and its mutation G2019S which is the most common cause of familial Parkinson’s identified so far. The LRRK2 mutation particularly affects North African Arabs and Ashkenazi Jews and it is what persuaded the Google founder Sergey Brin to invest nearly $2 billion in Parkinson’s research. He has the LRRK2 G2019S mutation passed on by his mother.

Matt Farrer, working with local clinical neurologists, focussed on two places thousands of miles apart where LRRK2 popped up, the Norwegian coast and Tunisia. In Norway they talked to seven patients with no apparent family connection in different villages strung along the coast. “When we pressed them and asked them, ‘is there anyone else in your family with Parkinson’s disease?’ we learned the truth, and the truth was, yes, there were lots of people in their families with symptoms of Parkinson’s disease. But because Parkinson’s is so variable, and some of these people lived 20 or 30 years ago, if not longer, they’d been overlooked.”

Later, Matt Farrer’s study in Tunisia of 100 families with Parkinson’s disease found that 40 of them turned out to have the same LRRK2 mutation as the Norwegians. Genetically, the piece of DNA containing LRRK2 G2019S that they had all inherited was identical.

A colleague from Norway also did some archaeological detective work which strengthened the notion that the Parkinson’s cases in the two countries were linked. “We found Nordic runes scratched into marble tablets in Carthage, and so it was clear that the Norwegians had been trading with the Tunisians centuries ago,” said Matt. “And in Norway, we pieced together these families and their genealogy and found that they were all related. They could all be traced back to one original 15th century founder, who presumably came from Tunisia.”

What Professor Farrer wanted to know was why the mutation was copied identically from generation to generation, and why it had increased in frequency over the decades. He explained that when the human genome makes a mistake it usually tries to fix it. So why had that not happened over what might have been hundreds of generations? His conclusion was rooted in his belief that nothing in biology can be understood except in the light of evolution.”It’s been positively selected. It’s been deliberately maintained by the human host, by the human genome, because it provides a survival advantage.”

This left me bamboozled. Why would a genetic mutation that resulted in Parkinson’s confer a survival advantage on anyone? At this point Matt Farrer threw into the mix a whole new genetic concept for me to tangle with - antagonistic pleiotropy. It is “ the idea that something can be good for you when you’re young at one stage of your life, but bad for you as you get older.“

So when a person is young, the mutations fire up the body’s defences, the immune system, which responds to external threats with inflammation which in this context is positive:

“They tweak the immune system just a little bit to make it a little bit more pro inflammatory, to allow the human host to be able to survive from a pathogenic insult, from an infectious disease.”

That enabled people with the LRRK2 mutation to survive infections which killed others. “That’s the reason why LRRK2 G2019 S has gone from one event to now being found in hundreds of thousands of people.”

But the way the mutation fires up the immune system comes back to bite you later in life because it disturbs the waste disposal processes which keep cells healthy. That can mean that the neurons which fire dopamine around your brain can start dying and that means you have got Parkinson’s. You might think that evolution would step up to the plate at this point and deselect the mutation.

But here’s the sad truth - biology does not care about older people: “From a biological sense, human beings aren’t worth having around after the age of 40. You’ve had your kids, and you’ve had 10 years or so to raise them, and as far as evolution is concerned, you’re obsolete. It’s the new generation that’s important. And from a DNA point of view, that’s how it works.”

But where does that leave researchers looking for a cure for all the people that have not got a rare genetic mutation? It means, says Professor Farrer, that they need to concentrate their efforts on the body’s immune system. He maintains that the lessons from his study of families where Parkinson’s is passed on down the generations are relevant to everyone with the disease;

“They point to the mechanism. They point to this biology that’s perturbed and affected, not just in them, but in idiopathic Parkinson’s disease as well. It’s the same mechanism that’s perturbed in everybody.”

Over the course of a month I had four long video calls with Matt Farrer as he tried to explain to me his research and why it mattered so much, with repeated interruptions from me asking him to have another go at “antagonistic pleiotropy” or the difference between genetic mutations “linked” with Parkinson’s and those “associated” with the disease. (Linked is a far greater causal connection than associated.)

Throughout, there were repeated outbursts of anger and frustration about the world of Parkinson’s research which he felt was heading in the wrong direction. When it came to genetics, he saw little value in putting people through genetic tests he thought might often cause unncessary worry. He described trials which focused on genes that were merely associated with Parkinson’s, rather than linked, as “built on sand.” And he was frustrated by the fact that he and several other leading geneticists have identified new genes such as RAB32 S71R that have been ignored. “RAB32 is a huge player in Parkinson’s as it activates LRRK2 kinase in response to inflammation, but it’s received almost no interest.”

If I have given the impression that my conversations with Matt Farrer have been depressing, that’s unfair. He may be angry but he is also optimistic that his message about the role genetics can play in finding a cure is getting through.”The tide is turning definitely, because the whole idea of a disease modifying or a neuroprotective therapy 20 years ago was thought to be utterly nonsense, really, and an unachievable objective.”

Now progress was being made but the key was to use genetics to understand Parkinson’s better: “You have got to figure out how it works before you can fix it. We’re not quite there yet, and where the effort and energy and probably some money needs to go is in figuring out the evolutionary mechanism that all ‘linked’ genes point to.”

And there is the problem - unlocking the secrets of Parkinson’s is going to be a costly business. In the 1980s tackling HIV/AIDS seemed even more daunting but a huge wave of cash was thrown at the scientists seeking new therapies and it worked. HIV, as long as it is treated, is no longer a death sentence. The amount of money going into Parkinson’s research is still comparatively small and that means that fundamental research, as well as clinical trials, is proceeding far too slowly.

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Over the last 24 hours both of the UK’s leading Parkinson’s charities have provided us with some good news.

Out of my radio this morning came news from Parkinson’s UK about research which may lead to early diagnosis of Parkinson’s even before symptoms make an appearance. The research showed that certain changes in the gut biome - an increasing focus of interest - differentiated people with Parkinson’s from the rest of the population.

Even more interesting, they found that people with the GBA1 gene that is associated with Parkinson’s but who had yet to develop symptoms of the condition, had the same pattern of gut microbe changes. Researchers trying to understand Parkinson’s and thereby find a way to halt its progression need a way to pinpoint people at the very early stages of the disease.

This research could provide them with the biomarker they have been looking for. Of even more interest to people living with Parkinson’s, the research opens up the possibility that changing your diet could have a material effect on your symptoms.

Yesterday at one of Cure Parkinson’s regular research updates, there was more good news. The session focused on inflammation of the brain as a potential cause of Parkinson’s and we heard from researchers trying to address this. Dr Sinead O’Sullivan from a German research institute told us about carnosic acid, found in rosemary and sage. Her experiments with mice had shown that it could lead to a decrease in inflammation, with the effect greater for females than males.

Another presentation from Cambridge’ s Dr Caroline Williams-Gray took us through a clinical trial of an immunosuppressive drug called azathioprine to see if it could slow the progression of Parkinson’s by suppressing the immune system in the brain. The trial failed to meet its primary end point - the target chosen by the researchers in advance. But many participants did show improvements in their motor symptoms and what was notable was that there was a greater effect for women than men.

The lessons from that research are being taken forward in a phase two clinical trial of another immunosuppressive drug dapansutrile. Dr. Williams-Gray told us that what the researchers were learning was that inflammation happened in different ways to different people, and that convinced them that what would be needed was much more targeted therapy.

What impressed me about the way both charities presented their news was that they were careful to avoid hype. On BBC Radio 4’s Today programme, Claire Bale from Parkinson’s UK emphasised that new research on the gut biome would take quite a while, while encouraging people to think positively about their diet in the meantime.

And the clear message from the Cure Parkinson’s research update was that we’re still at an early stage in understanding how to combat inflammation of the brain. We are all impatient for change, but science takes time. It also takes money, so it would be great to see the pharmaceuticals industry putting some more investment into these promising avenues of research.

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It all started so well with EMMA, who seemed an efficient new helper answering the phones at my GP surgery. True, she had no small talk and appeared devoid of any personality. But she fixed me up with an appointment and sorted out a problem I had uploading a scan to the GP with no fuss and that was the important thing. When things went pear-shaped, however, and I needed to talk to the GP on the phone, EMMA proved totally inflexible and uncommunicative.

In case you haven’t guessed, EMMA is an AI chatbot installed last month by the large West London surgery where I have been a patient for more than thirty years. Here is how she was introduced:

“EMMA, our new AI-powered virtual receptionist, is here to answer your calls instantly—no more waiting on hold or calling back at 8am. EMMA will guide you through a few simple steps, help you submit your request, and make sure your message goes straight to our team.”

This is undoubtedly a good idea. EMMA is available 24/7 and can answer many calls at the same time. If she can handle cases where it is clear what the caller wants, that should give the human receptionists more time to deal with anything more complex or calls from people uncomfortable with speaking to machines.

But my recent experience suggests that the surgery is putting too much responsibility in the hands of the chatbot and, when she fails, leaving the patient in a classic “computer says no” situation.

Let me take you through the saga of my doomed attempt to get the NHS to take my back pain seriously.

For some years now I have suffered repeated bouts of lower back pain. A couple of MRI scans have highlighted what the problem is:

“Diffuse disc related degenerative changes at multiple levels, as described with bilateral far lateral components, touching the respective exiting nerve roots.”

In simpler language, wear and tear in various parts of my spine means that from time to time a disc brushes against the sciatic nerve causing intense pain down my left leg. My back pain has nothing to do with my Parkinson’s but as this degenerative condition makes me less mobile the combination of the two has a significant effect on my quality of life.

Last autumn a flare-up left me struggling to walk any distance and I booked an appointment with my GP - and, when I say “my” GP, in a busy London practice that means a different doctor every time. This one was very sympathetic and said he would refer me to the pain clinic - but then he warned me that there was a six month waiting list.

Not prepared to spend the next six months in pain, I reluctantly decided to go private, talking to a doctor I had seen once before aboutv my back. I was swiftly given another MRI scan and then a steroid injection in my back. That took away the pain for four months.

But by March it was returning, first just a niggle like a softly spoken reminder of what it had been, then building up to a full-throated roar of pain. It is by no means constant - it can switch off as quickly as it comes on. But nearly every morning as I take our dog for a walk, it kicks in after about ten minutes, and the way home is slow and halting, to such an extent that on one ocaasion, no more than 400 metres from home, I contemplated calling an Uber to get me there.

This time, I was determined to get the NHS to treat me. In an appointment with a GP I had never met before I made my case that as someone with a long-term illness as well as these intermittent bouts of back pain, I deserved the help of a specialist. Somewhat to my surprise, the young doctor saw merit in my case. The next day I got a call offering me a range of hospitals across West London where I might be able to see an orthopaedic specialist. I chose one and felt at last I was on the conveyor belt towards proper care.

I got a letter confirming that my case had been referred to the hospital and telling me to get in touch if I had not heard of an appointment by April the 10th. Weeks passed and I heard nothing more, but thought I should cut them some slack because there had, after all, been a doctors’ strike. But on April 15th, I picked up the phone and called the hospital.

The good news was that it did not take too long to get through the menus and reach a human being. The bad news was that she told me that I was on a waiting list – I had thought the wait was only supposed to last until April 10th – and I was unlikely to be seen before August. Something snapped, and I went into a prolonged moan about feeling let down by the NHS. The woman was sympathetic but said there was nothing she could do - until I mentioned that I had Parkinson’s. Unbelievably, that appeared not to have been mentioned in the referral to the hospital, and she said that made all the difference.

She would get me an appointment pronto and I should expect a call from her the following day. Phew - relief was at hand. But the following day came and went without a call.

So 48 hours later I called the hospital again - annd disappeared into a Kafkaesque nightmare. A different woman answered this time, and when I related the conversation I’d had with her colleague, she asked for the name - which, foolishly, I had not taken. Then, after a brief period on hold, came devastating news:. No, I was not getting an appointment at the hospital. In fact, they had written to my GP on March the 18th, a few days after receiving the referral letter, saying that they could not handle my case. Protest as I might, the woman insisted I had only one course of action: to go back to my GP and find out what had gone wrong.

So I had to go back to EMMA. But my incoherent babbling about what must have seemed a complex case seemed to fox her completely. Instead of promising, as normal, that she would pass on my details to the right person, I found myself in that familiar, dispiriting land of “on hold” music. I had been put through to the normal human reception line, which in a way was a bit of a relief. Surely things would move quickly now. But no, I was number eight in the queue, and it wasn’t moving very quickly. After 30 minutes I was number four, but I seemed to get stuck there, and with 50 minutes approaching I gave up and put the phone down.

I tried to contain my rage and came up with what I thought was a logical plan. I would work out in advance exactly what I was going to say to EMMA so that she would understand. I would put my faith in AI, and it would do a better job than all those messy humans.

So I rang her again, spoke slowly and deliberately, and what do you know? It worked! She asked me several irrelevant questions, and it was clear that she had no record of our previous conversation, but she recapped the basics of my case at the end and promised to come back to me. Good old EMMA!

I sat waiting for the call that would surely come soon. There was no call but some time later my phonr pinged. It was a text message from the hospital reading “Dear Rory. To follow up on your referral, please contact Hopeless* Hospital on 0345…..”

Noooooo!! Seething with rage, I tapped out a reply. “That’s exactly what I did this morning. They said they had written to you rejecting the referral on March 18th”. I pressed send and quickly a “not delivered” message popped up. This was one of those “no reply” numbers which seemed to sum up the NHS approach to patient communications.

So. dear reader, I rang EMMA again, and I’m afraid I may have shouted at her. “Please, please, please can I talk to a human being about this?” To her credit, she took this rant perfectly calmly, asked me a few more irrelevant questions, and promised to pass things on to the relevant people.

That was Friday afternoon, and as of Monday morning I still have not heard back from EMMA or a human being at the surgery. And the more I think about it, the more I see that it is not the receptionist robot’s fault. She is doing the job she is trained to do anbd mostly doing it rather well. But, in the short-term at least, there are bound to be situations like mine where the caller needs. to speak to a. human being.

And there’s another wider problem. Too often the NHS is in broadcast mode when it communicates with patients, giving us messages about our treatment but making it hard for us to respond or to interrogate the information we are given.

I truly believe that AI can improve care in the NHS, and my surgery has been innovative in using software which records what happens in an appointment, then delivers a report at the end. But an organisation which still regards doctors’ email addresses as state secrets has much to learn about modern communications.

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These days, a combination of my Parkinson’s and a bad back sometimes makes it more comfortable for me to cycle a relatively short distance than to walk. So on Monday I cycled to Ealing Broadway, a fifteen minute walk away, and locked my bicycle with a chain to the bike racks opposite the station. As I headed off to catch the tube to Holland Park for a recording of two episodes of the Movers and Shakers podcast, I could not help noticing that there were CCTV cameras in the roof of the shelter which houses the bike racks.

You would have to be pretty daft to try stealing a bike there, I thought to myself - why saw through a bike lock in such a prominent spot where your crime would be recorded?

Well, I expect you can work out what I found when I returned to the bike racks six hours later after a successful session podcasting about Parkinson’s. Where my sturdy and relatively cheap bike had been parked there was nothing except the chunky chain which had been severed and the cycling helmet which I had left dangling from the handlebars, convinced (correctly in this instance) that thieves do not care about head protection

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As you can imagine, I cursed loudly but, remembering the CCTV camera, thought at least the thief would be caught in the act. A sign at the bike shelter encouraged people to report bike thefts so I trudged home and immediately filed a report to the Metropolitan Police. I wrestled with the unwieldy form and highlighted the fact that there was a very good chance that the CCTV camera would have captured the moment during the six hours I was away that the thief took my bicycle.

I have no complaints about the speed with which the police responded to my crime report. Within minutes I received an email offering to put me in touch with Victim Support - “we understand that the effects of crime can be devastating” - and barely twenty minutes later another message telling me the result of the investigation.

“At this time the crime report will be closed. This is because the time frame you have given for CCTV enquiries is around 6 hours which is therefore not suitable for investigation. If you are able to view the footage and pin point an exact time the offence occurred, we can look to reopen the investigation.”

There was a more formal letter attached to the email saying “Please know that we have followed up all reasonable investigative leads and have reached this decision based on the evidence and local resources available to us.”

Well, you might think that checking out CCTV footage was a “reasonable investigative lead” but it seems there is an official limit on the time police officers can be expected to wade through footage and it is a lot less than six hours. When I mentioned this on BlueSky, however, smart people pointed out that it takes far less than six hours to scan six hours of a stationary object.

“You don’t even need to fast forward,” said Ross Windsor. “Go to the midpoint and see if the bike is there. Congratulations, you’ve now narrowed it down to a 3 hour window. Repeat this process for like 10 minutes and you’re done.”

But what of their suggestion that I go and inspect the footage myself? I was still unsure who owned the CCTV system, so I returned to the scene of the crime the following morning and found a notice directing me to Ealing Council’s website.

Describing it under the heading “Crime Prevention”, the website said “the public safety CCTV system is owned and operated by Ealing Council, in partnership with the Metropolitan Police.” The footage was kept for 31 days and then automatically deleted.

As for me getting to see the footage, the website seemed to imply that this could only happen in cases involving a traffic accident, would involve a payment of £127 to get the council to search for the footage, and another £127 to release it. Oh, and only a solicitor or insurance company could do it - “requests from members of the public will not be accepted and processed”.

Now, I have to confess I was not at all surprised by the fact that the Met was not going to treat the theft of my bike as the crime of the century. I had read a fascinating article by the journalist Jim Waterson of the essential local news site London Centric where he described how impossible it was to get the police interested in investigating the theft of his expensive electric bike, even though he could track it with an Apple AirTag.

So my £350 chunky hybrid was just going to join the list of around 16,000 bikes reported stolen in London each year - with cycling campaigners claiming the number is more like 40,000 if you count thefts not reported to the police.

I do have some sympathy with the Met which has to devote most of its resources to far more serious offences than bike theft. But I do not think I will be leaving my new bicycle in the council’s bike racks in future, even if they are protected by 24 hour surveillance. Because it has suddenly become clear to me what CCTV really stands for - Can’t Catch Thieving Villains.

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This Saturday the Movers and Shakers celebrated World Parkinson’s Day at a wonderful event organised by a Parkinson’s group in Sutton, in South West London.

There was music, there was live Tai-Chi and dance, there was even a Q&A session with me, Gillian Lacey-Solymar, Sir Nicholas Mostyn and Mark Mardell.

In between, we managed to record a special episode of our podcast, celebrating the Sutton event but also launching our big campaign for this year which is all about the voice. For many people with Parkinson’s a weaker voice and other problems with speech are the most debilitating symptoms of the condition - yet they are rarely talked about.

We’re preparing a major publicity blitz using the slogan L.O.S.T. - lack of speech therapists - to demand better treatment. And we are holding a year long celebration of our voices that we are calling The Search Party - as it is our mission to find our lost voices. We want you to send us your songs, your choral performances, your poetry and we will showcase them on our social media channels.

Find out how it is going to work here.

We feel we got our message across about our Parky Charter manifesto for better Parkinson’s care when we staggered up Downing Street in 2024. Then in 2025 we mobilised a couple of hundred Parkies and supporters for the Big Sing outside Parliament, hoping to put some momentum behind our petition calling for the Parky Charter to be enacted. That worked - well we got the 100,000 signatures we needed for a Commons debate, even if there is plenty left to do to improve care for people with Parkinson’s

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But one of the most important things we have learned over the last three years is the vital role played by local groups. So when the very energetic group in Sutton, to the south west of London, invited us to their World Parkinson’s Day shindig we were only too happy to accept.

All sorts of activities are going on between 10am and 2pm in the Sutton Library , including Tai-Chi, an exercise group, a choir and a band. And despite the fact that it is all taking place in a library we have been told that we do not have to whisper. Which is good because as well as answering questions about the podcast we will be launching what should be a very noisy campaign.

We want to highlight one of the most common and distressing , yet often unrecognised, symptoms of Parkinson’s, the weakening of the voice. Mark Mardell, a great broadcaster, has spoken often of the pain that he has experienced as the voice that was essential to his career has faded. He has been the energetic and determined leader shaping a campaign to bring awareness - and to raise all our voices, both literally and metaphorically over the next year to demand more help..

We have plans, big plans, to make people listen to our call for better treatment and in particular more speech therapists. Listen out for details of an advertising campaign and a celebration called The Search Party where we will invite choirs, musicians and poets from across the Parkinson’s community to find voices which have been lost.

If you are anywhere near Sutton do come and join us at the library, if not listen out on Sunday for the podcast we will be recording at the event.

Why is it taking so long to find a cure for Parkinson’s? Over the last 20 years rapid progress has been made in treating many cancers, HIV has been transformed from a death sentence to a manageable condition, and disease modifying therapies have made living with Multiple Sclerosis more bearable for many people. But with Parkinson’s, despite advances in therapies such as Deep Brain Stimulation and drug pumps which can alleviate symptoms, the search for a disease modifying drug goes on.

I imagine most people with Parkinson’s spend quite a lot of time thinking about the search for a cure and whether it will come in time to make much of a difference to their lives. But I have a couple of reasons to be more obsessed than most with this subject.

First, I am two weeks into a three year clinical trial of drugs which could potentially bring us the long awaited solution to the Parkinson’s puzzle.Being a trial participant is for anyone with a modicum of curiosity like going on an Open University course on Parkinson’s, with the long-suffering doctors and trial organisers always on hand as course lecturers to answer questions. (Thank you, Rowan and Christine.)

Second, I am deep in the process of researching and writing a book about the hunt for a cure and the role that artificial intelligence might play in it. As any author will tell you, a book is something that takes over your life 24/7 - so I find myself lying awake in the wee small hours thinking about the role of mitochondria and alpha-synuclein in Parkinson’s and whether the protein folding prediction program AlphaFold really will speed up the process of finding new drugs.

I have also spent many hours talking to many of the most brilliant scientists and doctors searching for a cure, often asking them to explain concepts that someone who gave up biology at 13 finds difficult to grasp. But the result of these many conversations is that I am now pretty confident that there are three big problems that need to be solved before we can find a way to cure Parkinson’s.

It’s Complicated…..

If you are going to find a way of curing Parkinson’s - which by the way means slowing, stopping or reversing the disease according to the charity Cure Parkinson’s - you have to know how it works so that you can draw up a plan of attack. That is always going to be tougher when it comes to a disease of the brain, with its 86 billion neurons, rather than the somewhat simpler landscapes of organs like the heart or liver. Some progress has been made in the 21st century, with broad agreement that a protein called alpha-synuclein which can accumulate in clumps in the brain is a prime suspect for a role in causing Parkinson’s. But failures in mitochondria, the power-packs in every cell, have also come under suspicion and further back down the chain of causation, environmental factors such as dangerous pesticides or air pollution are getting the blame.

In a column in the Financial Times in March, the neuroscientist Professor Geraint Rees, who taught the Google DeepMind founder Sir Demis Hassabis at Oxford, argued that we could not expect AI to solve the mysteries of brain diseases in a hurry.

The problem, he said, was a lack of data about the brain. Immunology had been in the same position a while back, with the way the immune system dealt with rogue cells “poorly understood, technically difficult to study and commercially unattractive. It took sustained public investment over decades to build the data and conceptual infrastructure that made everything else possible.”

A similar programme of investment in data about the brain was needed, argued Professor Rees, if progress was to be made in delivering “therapeutic molecules” to the brain.

Measuring Parkinson’s

But if scientists - whether using AI or traditional methods - find what they think are the right molecules or innovative therapies to tackle Parkinson’s, they still have to show they work in clinical trials. That means measuring the state of a trial participant’s symptoms before and after taking the drug or receiving the therapy - and showing not simply an improvement compared to the rate of decline expected in a progressive condition like Parkinson’s but a result significantly better than those recorded by trial participants given a placebo.

The method used in most trials to give a readout of a drug’s performance is the Unified Parkinson’s Disease Rating Scale or UPDRS, a series of tests which will be an familiar to anyone who has had an appointment with a neurologist. They range from getting up unaided out of a chair to tapping together your thumb and forefinger to walking up and down the hospital corridor. Each exercise is graded 0 to 4 by the doctor or nurse doing the test, the higher the number, the worse the symptom.

It must be easy enough for the medical professional to decide between 0, where the patient is completely normal, and 4 where the symptom is so severe that, for instance, the patient cannot get out of a chair unaided. But deciding between 1, 2 and 3 - slight, mild and moderate - must be a lot more tricky. A lot hangs on what must be a pretty subjective judgment - deciding a symptom is moderate rather than slight will add two points to the patient’s overall score and two points on UPDRS is the average annual rate of decline of someone with Parkinson’s.

One man who is deeply unsatisfied with this state of affairs is Professor Alan Whone. He ran the extremely ambitious Bristol trial of GDNF, a kind of fertiliser for neurons delivered to the patient in lengthy brain surgery. Many of the participants were optimistic that the treatment worked, slowing down or stopping the progression of their Parkinson’s. But when the interim results were published in 2017, the gap between the UPDRS scores of those who had been given the treatment and those who had received so-called sham surgery was not big enough.

When I interviewed Professor Whone for my book he told me that it was “utterly bonkers” that the fate of a trial involving robotic surgery and the insertion of a port into a patient’s skull “which is almost science fiction” should depend on such an antiquated system.

But Alan Whone did not just complain, he did something about it. In 2022 I visited what I called the Parkinson’s Big Brother House, a terraced house where new technology to measure Parkinson’s was being tested. Professor Whone and his team were inviting groups of volunteers, half with Parkinson’s, half without, to spend five days in the house with their every move being recorded by a range of sensors.

The idea was to develop technology which could be installed in the homes of clinical trial participants, providing a constant readout of the state of their Parkinson’s, rather than the impressionistic snapshot delivered by a UPDRS checkup at the beginning and end of a trial.

But four years on, the ACT-PD trial I am on has not installed this technology in my home - because it does not yet exist. Instead, the UPDRS will determine the success or failure of the trial, albeit a more rounded version where both motor and non motor symptoms are assessed with the patient invited to describe their symptoms.

There is however a glimpse of a future where wearable technology could help provide more accurate measurement. One of the trial’s sub-studies involves participants wearing a sensor to record how they move. I have signed up and have already had a sensor stuck to my back for a week to give a baseline reading of my symptoms at the beginning of the trial. I will wear it again a couple of times midway through and at the end of the trial. It will be fascinating to compare the readings from the sensor with the answers I give in the UPDRS questionnaires which will still be decisive.

Money

But what will be vital in accelerating progress towards a cure is money. HIV/AIDS is the standout example that money matters - it has been tackled with a huge global programme costing billions. The US government alone has spent $110 billion, although recent cuts in foreign aid by the Trump administration have raised concerns that many in Africa could be denied life-saving treatment.

In the world of Parkinson’s research by contrast the sums involved usually have three fewer zeros on the end - we’re talking millions rather than billions. An FOI request by Parkinson’s UK revealed that in the 2021/2022 financial year the UK government spent just £6.7 million on research into Parkinson’s, and was outspent by the charities. In the US too it has been the Michael J. Fox Foundation which has made the running, putting $2.5 billion into research over twenty years.

It is the pharmaceuticals industry which has been missing in action. One reason clinical trials for promising drugs have taken so long is a lack of support - or rather consistent long-term support - from drug companies. Not just Parkinson’s but all neurodegenerative diseases seem to go in and out of fashion at an alarming pace. Last year, AstraZeneca announced it was pulling out of all neuroscience projects to focus on weight loss and immunology.

Now, given the repeated failure of drugs like exenatide to get through their phase three trials, it is understandable that commercial businesses do not want to throw good money after bad. But things can change quickly. The recent successes in developing drugs to treat multiple sclerosis is earning pharmaceuticals companies money - $20 billion in 2024 according to one report - which makes them more likely to fund future research.

It is a virtuous circle that needs to happen in the Parkinson’s world. According to Fortune Business Insights, global revenues for Parkinson’s drugs in 2025 amounted to less than $8 billion and were dominated by levodopa, a drug invented over 60 years ago.

As we have seen, the route to a cure lies in better data and new technology to help measure the progress of the disease and identify molecules which could beat it. That will require a lot of money and a unified push from drug companies, governments and research scientists to make it happen.

First of all, a confession - I am a heavy drug user. In fact, I now take 16 tablets every day. Most of them are for Parkinson’s and its symptoms - or the side effects of one of the drugs. The latest, which I have been taking for a week now, is rather mysterious.

It could be a drug called telmisartan, or one called terazosin - it could even be a dummy drug that does absolutely nothing. The reason I can’t tell you is that I am now a participant in the biggest ever trial of Parkinson’s drugs and it’s, in the jargon, double-blinded and placebo controlled so I won’t know for three years what I have been taking.

But it’s another of my drugs that has been in the headlines lately, with accusations that patients have not been given sufficient warnings of a very serious side effect. Ropinirole, prescribed to me under the brand name Raponer XL, is a dopamine agonist, a class of drugs that stimulate dopamine receptors in the brain.

They are widely prescribed for people with Parkinson’s, restless leg syndrome and a few other conditions. They are effective at lessening tremors and are often used to supplement dopamine replacement drugs as they do not produce the dyskinesia that can be a side effect of those treatments.

But they also have a side effect of their own. They can result in a range of impulsive behaviours - hypersexuality, gambling, uncontrolled spending and binge eating - which can have a devastating impact on patients and their families.

In an early episode of the Movers and Shakers podcast a young couple, Kirsty and Jason, described how their marriage was very nearly destroyed by a dopamine agonist. Kirsty, who had been diagnosed at 27 with young onset Parkinson’s, developed a range of compulsive behaviours, started a relationship with another man and left the family home and her two young children. Eventually – after far too long – her doctors realised that the drug was to blame, reduced the dose and Kirsty came home to a husband who had never given up on their marriage, despite advice from friends and close relatives to get a divorce.

But if this seemed like a very rare occurrence, the BBC reporter Noel Titheradge has shown that is far from the case. In a brilliant and disturbing podcast Impulsive he interviews some of the more than 200 people who contacted him after he first wrote last year about the dangers of dopamine agonists and the failure of the drugs companies and doctors to make people aware of the dangers. Among the many horrific stories, that of a respected solicitor who took his own life after stealing £600,000 from his clients to pay for sex and for his obsessive purchases of antiques.

This weekend Noel Titheradge had a new angle on the kind of advice given to users of these drugs. He revealed that in a leaflet that came with the dopamine agonist Pramexipole impulsive behaviour was listed as an “uncommon” side effect, meaning it affected fewer than 1 in 100 people. The drugs regulator MHRA, which would have approved the leaflet, said an error had been identified and the wording would now be changed to “common”.

Now, I have to say that from the moment he prescribed me Ropinirole, my neurologist has been scrupulous about highlighting the risk of impulsive behaviour and every time he sees me he checks that I have not noticed anything worrying. Side effects generally make themselves felt fairly quickly, so four years into my experience with a dopamine agonist I am not too concerned that I am at risk.

But having seen the story about Pramexipole, I thought I would take a look at the leaflet that comes with my Ropinirole. It is very long and thorough and the section on possible side effects is on the reverse of the leaflet. They are listed in three categories - “very common” (may affect more than 1 in 10 people), “common (may affect up to 1 in 10 people) and “uncommon (may affect up to 100 people).”

Then there is a separate category “Not known (cannot be estimated from the available data.)” The fifth entry under this heading which you would have reached after wading through most of the leaflet is:

“inability to resist the impulse, drive or temptation to perform an action that could be harmful to you or others, which may include:

• strong impulse to gamble excessively despite serious personal or family consequences

• altered or increased sexual interest and behaviour of significant concern to you or to others, for example, an increased sexual drive

• uncontrollable excessive shopping or spending

• binge eating (eating large amounts of food in a short time period) or compulsive eating (eating more food than normal and more than is needed to satisfy your hunger).

Once you get there, the warning is stark enough, but I would imagine that very few people find their way to this rather important piece of information. The MHRA is now reviewing the warnings given on all eight commonly prescribed dopamine agonists so I will be interested to hear what they say about Ropinirole.

But what this story also highlights is the importance of giving people with Parkinson’s regular access to a neurologist - or at least an easy way to alert either the doctor or a Parkinson’s nurse to any problems. I received an email recently from someone whose mother-in-law had last seen a neurologist three years ago when he had prescribed her drugs which had not been changed since.

There is plenty of blame to go round. Pharmaceutical firms need to do better in assessing the level of risk from any drug - if it “cannot be estimated from the available data” they should be getting more data. Medical professionals should consider alerting partners and carers as well as patients to be on the lookout for side effects. And yes, we as patients need to be more curious about the drugs we are taking.

But the fact that so many people have somehow not heard the warnings about dopamine agonists is above all another failure of communication in the NHS. Satisfaction with the health service has edged up recently from historic lows - but when it comes to communication the verdict has to be “must do better.”

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I have written recently about concerns that the American AI giant Palantir has been given a big NHS contract involving sharing patient data, despite a track record in the US of enabling the surveillance of private citizens. But whatever the concerns about its ethics, I had always assumed that Palantir’s software, used by the Department of Health during the pandemic to give the government an up to date snapshot of the state of play, was pretty good.

Then a few weeks ago I got an email from a man who claimed to be an NHS IT worker, though he preferred to remain anonymous and signed as just “John”.

He told me that the software provided by Palantir for the NHS Federated Data Platform was just “not very good”. He stressed that it was not universally bad and was effective at bringing disparate data sources together “but its functionality for data querying, pipelining, analytics, and visualisation is less effective and produces outputs that fall short compared to existing NHS solutions. It is really a very overpriced data warehouse that the NHS is trying to use to meet all its data needs.”

The main complaint seemed to be mission creep. NHS managers were pressing hospitals and GP surgeries, via the Trusts and Integrated Care Boards that run them, not only to sign up to the FDP but to start using Palantir in other areas. This came at the expense of other software with which NHS staff were familiar and liked better.

The result was that large sums were being spent on “upskilling” staff who were being told their skills in Excel, SQL Server, Oracle, Qlik, Tableau, PowerBI, and R were no longer relevant.

And “John” said there was a climate of fear which made it hard for staff to make their views known:

“Efforts to engage constructively about the software's limitations are often met with accusations of resisting change, and in the current climate of the NHS, it is risky to express concerns openly.”

Now, I was in two minds about this story. On the one hand it sounded convincing, given the propensity of the UK public sector over the years to hand large sums to American software companies without much clarity over. what they are getting. On the other hand one anonymous source wasn’t really good enough, even though when I contacted “John” he gave me his real name and established to my satisfaction that he did work in IT for the NHS.

So I looked around and spoke to a more senior figure managing various data projects in the NHS. He confirmed much of what “John” said and gave as an example a project where his team were trying to bring together various sources of data about cancer:”They were told that if you’re going to be doing this analytic work, you have to do it on FDP.” But when they looked at the software, they found that it was inferior to what they currently used, Microsoft Azure.

He explained that the NHS had developed standard components which meant, for instance, that apps and websites worked for people with visual impairments, and functioned as well on a mobile as on desktop.”FDP components are not as good,”he said. “and the user interface in general wasn’t pleasant.”

But this executive did not want to go public, and I did want, if possible to put a name to criticisms that are also all over forums like Reddit. One man who has talked publicly about the FDP controversy is Marc Farr, chair of the Chief Data and Analytical Officer Network. Speaking on behalf of senior NHS data scientists, he has described himself as a “critical friend” to the FDP.

In public letters to a senior figure in NHS data management, Farr has queried the pressure to do everything in the FDP and believes his concerns have resulted in a softening of that approach. When I spoke to him he made it clear that he had no interest in getting involved in the politics of Palantir. “I’m more interested in, as a taxpayer, how do we make the most out of any money that we spend on data, and I think they’re not going about it in a great way.”

He says that while the FDP contract was worth £330 million to Palantir, the total cost of the system to taxpayers will be nearer to £1 billion because of the costs incurred by hospital trusts: “If Trust X wants to implement it, they need 50 days of a developer and two new project managers and some new computer systems and so on.”

His group is all in favour of bringing data together but not of telling organisations that they have to junk perfectly good systems to handle it: “Allow people to link to it and then take it off to their own thing. Allow them to code in the language that they’re used to. Don’t just make everybody stop what they’re doing and learn a new proprietary piece of software.”

Marc Farr also warns that patient safety could be at risk if trusts are told that the FDP is the only game in town and their existing systems must be scrapped: “There are systems already at the moment that manage the cancer referrals for a patient. If you say, well, in the future, we’re going to build one, we’re saying that sounds great, but until you do, you can’t turn off the system that currently works today.”

On Sunday the Observer ran a largely positive double page spread on Palantir’s role in various parts of the UK public sector, crediting its software with cutting crime and waiting lists and boosting operations. But I was particularly struck by these two sentences:

“The civil service has a long history of failed IT projects. Palantir offers instant solutions and a record of demonstrable benefits.”

The civil service does indeed have a long history of failed IT projects, but many of them involved large overseas tech companies offering “instant solutions” being handed lucrative contracts by mandarins with very little knowledge of IT. There was a valiant attempt to change things when the coalition government created GDS, the Government Digital Service, with a brief to bring some tech expertise into Whitehall and run a critical eye over any plans to sign mega deals.

But senior civil servants resented the upstart intruder and while it still exists it has been largely neutered as an IT spending watchdog, unable to say “just wait a minute” when anything like Palantir’s £330 million FDP contract comes along.

Last week, however, there was a hint that the wind might be changing again. The Science Minister Lord (Patrick) Vallance told MPs on the Commons Science, Innovation and Technology Select Committee that the NHS Palantir contract was signed under the previous government and things were now going to change:
”I hope I have been clear in describing a very different way of doing contracts: putting British companies there and procuring innovation here." But he said that, as far as the current contract with Palantir and pressure from some MPs for it to end early was concerned, that was a matter for the Department of Health and Social Care: “It is a contract with DHSC, and if there are issues around that, they are the ones that need to look at that. I cannot."

When I contacted NHS England - a body soon to be abolished - about pressure to use the FDP I was pointed towards an FAQ on its website setting out “the expectation that all providers and integrated care boards onboard* to the NHS Federated Data Platform and start making use of core products, data capabilities and population health management tools by 2028/29.”

And an NHS spokesperson said:“The Federated Data Platform is already delivering huge benefits for patients and the NHS – joining up care, speeding up cancer diagnosis and ensuring thousands of additional patients can be treated each month.”

But with areas such as Greater Manchester insisting they had already set up data sharing systems before the FDP came along and they are not going to close them down, the scene is set for further clashes over Palantir’s expanding role in the NHS.

*Yes, “onboard” is apparently now a verb.

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I think we missed a trick when we recorded this week’s episode of Movers and Shakers. We should have ended it with a rousing chorus of that classic anthem from Monty Python’s Life of Brian, “Always Look On The Bright Side of Life.” Yes, our subject in what is the last episode before we take a short break is positivity about Parkinson’s - we try to work out whether being cheerful is good for you.

The idea for the episode came in part from one of our listeners, Laura Armstrong, who wrote to us about her positive philosophy. In an interview with Gillian Lacey-Solymar she said: ”I’ve got a little sign in the toilet that says, ‘amazing things will happen to you today if you choose not to be a miserable cow.’” And she gives an example: “Me talking to you now - if I hadn’t been positive, I wouldn’t be here.”

The trouble is, Parkinson’s has a way of making you feel miserable and as Laura says, “nobody wants to be around somebody who’s miserable”. But she says it is still possible to be honest about how you’re feeling and put a positive spin on it.

“If you go ‘I’m having a bad day, but it’s fine’, and then you crack on, people will continue to speak to you.”

Looking round the table, we realise that we are a pretty positive bunch. When I first met the judge, Nick Mostyn I had been warned that he had been knocked sideways by his recent diagnosis. But he turned out to be the most upbeat and enthusiastic character imaginable. He describes himself as “tiggerish” but says there is a price to pay for his positivity

“If you’re relentless, like I am - relentlessly optimistic - it means that one is persistently disappointed, because one has expectations, optimistic expectations, and then they’re not always fulfilled.”

Mark Mardell, who says he has always been a fairly upbeat person, nevertheless says we could end up giving the wider world the wrong impression of Parkinson’s: “If everybody is as positive as we are, then people outside don’t necessarily see how bad it actually is. “

In my experience, the important thing is not to retreat into your own Parkinson’s ghetto, succumbing to a common symptom, apathy. I have done two things recently which have cheered me up immensely - taking up walking football with a group mainly consisting of non-Parkies, and getting accepted onto a major clinical trial.

But we are all a bunch of moaning Minnies compared with “Positive Paul”. Nick Mostyn says when he first met Paul Mayhew-Archer he was taken aback when the great comedy scriptwriter said the best thing that ever happened to him was getting Parkinson’s. Paul has had a hard time lately, frequently suffering sudden freezes where he is incapable of moving forward.

Nevertheless, Parkinson’s has also given him a new career as a stand-up comedian touring the country with his show Incurable Optimist, and he says he still stands by what he told the judge.

A psychotherapist Lucy Solymar - she happens to be Gillian’s sister - tells us that good mental health is more complex than just being positive:

“I’m not sure I would think about it as being positive or being negative, I think what’s important is being engaged, having projects that interest you, relationships that matter to you.”

And she cautions us against “toxic positivity”, the idea that happiness or positivity is a choice at any moment in time: “We need to allow people to feel their negative emotions like sadness and hopelessness, and they need to be heard and understood. And perhaps I would say that if people have their negative emotions heard and understood, then they are much more likely to be able to access some of their positive feelings about life.”

When we debate which subjects to choose for episodes of Movers and Shakers we try to balance light and shade, upbeat subjects and those that are more depressing. But sometimes it is the darker episodes, such as last autumns episodes about Parkinsonism and the plight of many Africans with Parkinson’s, which get the most reaction.

We are now taking a short break. We will have a special episode on April 11th, World Parkinson’s Day, and then a new series will start in late May. Do let us know if you have ideas for subjects you would like us to follow - our email address is feedback@moversandshakersodcast.com

Last month I wrote about a British company that was building a giant biological database and planned to use it to find new treatments for any disease. I was bowled over by Basecamp Research’s ambition, though a little voice kept whispering in my ear “calm down, you know next to nothing about science.”

But now the company is making even bigger claims after unveiling an alliance with three companies, each with first class skills in AI or genomics. Basecamp’s EDEN, described as a Large Language Model whose language is DNA, was built on. 10 billion genes collected by the company’s researchers around the world. Now the partnership with AI giant Anthropic, and genomics companies Ultima Genomics and PacBio is designed to allow it to build a trillion gene atlas.

I got back to Basecamp’s founders Oliver Vince and Glen Gowers to try to find out what this meant for the company’s roadmap. Glen explained that teaming up with the two genomics companies would supercharge all the DNA sequencing they needed to do. As for Anthropic, with its highly rated LLM Claude, they would be exploring “how you get to programmable therapeutics using the best of both the natural language models and the best of the biological language models, now that the biological language models with the trillion gene Atlas can be at the same scale, whereas historically they have not been.”

I have been exploring the world of programmable therapeutics - or AI drug discovery as it is more commonly known - for a book I am currently writing about the hunt for a cure for Parkinson’s and the role that AI might play in it. Last week, I made my second visit to Isomorphic Labs, the company spun out of Google DeepMind by Sir Demis Hassabis to have a crack at achieving his goal of using AI to “solve all diseases” within 10 to 15 years. On both occasions I have been blown away by the calibre of the people and the amount of money deployed in this mission.

This time I learned about Isomorphic’s drug discovery engine, built partly on DeepMind’s Nobel Prize winning AlphaFold protein folding technology. The ciaim is that this will accelerate the process of finding a target, perhaps a rogue protein, for treating any disease and then to zero in on the molecule which would bind onto it..

So how were they going to compete with that, I asked Basecamp’s founders. Oliver Vince came charging back, saying that rather than just using AI to speed up the existing system of drug discovery, their model took a radically different approach:

“This is a complete rethink. This is saying, what if you could just teach something biology, teach something evolution at such a scale that it would be able to understand and design whatever you wanted, and then you figure out how to point it at the task at hand?”

He talks of bringing together the vast biological knowledge of Eden with the reasoning capabilities of models like Claude:”They’re thinking through the problem, and they are getting surprisingly good, surprisingly quickly.” The two founders admit that this is a giant experiment whose outcome is uncertain but they point to the quality of their new partners who share their vision.

A short while before. our conversation a courier had delivered a box to my house which told a different story about drug discovery. It contained the first few weeks’ worth of drugs that I am going to take as a participant in the biggest Parkinson’s clinical trial to date. It’s a classic double blinded placebo controlled trial, with the twist that the new ACT-PD platform allows the testing of several drugs at once.

The label on the bottle tells me it contains either one of two existing drugs or a placebo but it will be at least 18 months before I learn which of the three I have been given. But if Basecamp’s EDEN does come up with a treatment for Parkinson’s it will still face the same protracted clinical trial process.

So it is hugely exciting that two London-based companies are leading the charge to transform the hunt for new drugs with AI. But I am not betting that they will solve Parkinson’s in time for me.

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For many people with a neurodegenerative disease like Parkinson’s there is a question that looms larger as the years go by - when should I give up driving? The decision may be made by you, the patient, it may come at the gentle urging of your loved ones, or you might have no choice if the DVLA decides to take away your licence

This week on Movers and Shakers we explore what can be a surprisingly emotional subject, driving with Parkinson’s. When we told our Facebook group that we were going to be covering this issue it quickly became clear that it was a hot topic, with dozens of people sharing their experiences or asking questions.

What were the rules on telling the DVLA or your insurer about a Parkinson’s diagnosis?

Does it have to be your doctor who assesses your fitness to drive?

Why does it take the DVLA so long to decide on renewing your licence and can you carry on driving with an expired licence while you wait for an answer?

Luckily we have with us in the pub an expert on these issues, Laura Phillips from Parkinson’s UK, who runs the charity’s helpline answering questions about motoring.

We start by sharing our own experiences and it is a surprise to me that, out of the five Movers and Shakers around the table only Nick “the judge” Mostyn and I are still driving. Mark Mardell explains that the decision was made for him: “My wife Jo decided…I was not even diagnosed, really, but as soon as we realised I probably did have it, she said, No, you shouldn’t be driving.”

Mark says what he misses is not the driving but the autonomy it gave him: “I have to rely on Jo, just to pop down the shops or something. It’s really very irritating.”

Gillian Lacey-Solymar agrees about the loss of autonomy but says she had lost that even before she gave up driving. She knew it was time to stop - “I can’t judge distances”- and she praises her chauffeur/husband Mike. “He doesn’t seem to mind driving me wherever I’d like to go, which is quite extraordinary.”

Paul Mayhew-Archer has stopped driving very recently: “I just nearly had an accident, I nearly went into somebody, and I decided that my reaction times were too slow.” Living in a small town in Oxfordshire, that leaves him and his wife Julie feeling pretty isolated.

Nick Mostyn still drives but says he won’t do distances of further than 25 miles “because I’m really frightened of falling asleep.” He has been very organised about getting his driving licence renewed and has a great tip - send the DVLA a direct message on X, formerly known as Twitter

“They respond almost immediately when you do that, and they will send the paperwork to your clinician, provided they’ve got an NHS address. You have to tee up your clinician to make sure they reply to it immediately. And if you keep your foot on the pedal, so to speak, it works all right.”

I wish I had known that when my second three year licence since my Parkinson’s diagnosis came up for renewal last August. I responded quickly to the letter from the DVLA but I should have been proactive - you can apply for a new licence up to 90 days before the old one expires. Instead, August came and went, I filled in a long questionnaire about my driving and the effects of my medication, and waited. Then in the autumn the DVLA wrote to me to say that I needed to get my doctor to write a report on whether I was fit to drive. Time passed, and as 2026 dawned I was still waiting to hear about my new licence.

We had plenty of messages from people who had similar experiences with the DVLA but first we had a pretty basic question from our Facebook group - James O’Sullivan asked “do you need to volunteer the information to your insurance company that you have PD?”

Laura Phillips is clear - you need to inform both the DVLA and your insurer about a Parkinson’s diagnosis: “If anything happened and you haven’t disclosed a medical condition that impacts your driving ability to your insurance provider, it might actually make your insurance policy completely invalid.”

Another message came from a woman who lost her licence for being too honest on the DVLA form. Lisa Dalton wrote:“One question asked if I felt tired during the day. I was, at the time, 55, working a highly active job, menopausal as well as having PD. So I thought about it and ticked yes. Instantly revoked licence.” She got her licence back - but only after more than a year of discussions, tests and sleep monitoring.

Laura’s advice is to answer the questions honestly but to give context: “It is really common for people to experience different symptoms that could affect your ability to drive. But when you’re communicating that to the DVLA or to your consultant, you know it’s important to say in context, yes, I sometimes feel drowsy, but never when I’m driving.”

With the DVLA moving so slowly, and one reason for delays being the need for a doctor to supply a medical review of the licence applicant, one correspondent thought a Parkinson’s nurse ought to be allowed to carry out the review. Laura Phillips had news - a recent change meant that PD nurses could complete the DVLA form. But Laura said she had spoken to one nurse who said that, while she was happy to do this in straightforward cases where she knew the patient, whenever it was more complex or she was not too familiar with the person, she would hand the form over to the consultant.

One comfort for those in the queue for a new licence is that under section 88 of the Road Traffic Act you can carry on driving after your current licence expires while you wait for an answer from the DVLA. But that is not much use if you want to drive abroad where overseas police or car rental companies are unlikely to be impressed by an out of date iicence.

It remains the case that the process for dealing with driving licence applications from people with medical conditions is, in the words of one of our correspondents, “bonkers”.

We told the DVLA about the complaints we had received and the agency gave us this statement:

“We are sorry for the delays some customers have experienced. We are currently seeing exceptionally high demand for applications from customers with medical conditions, which has regrettably impacted some processing times. When we have the information we need, we always aim to make a decision as quickly as possible.

“Our staff are working hard to reduce delays, and we are introducing a new casework system which is expected to deliver significant improvements to the services provided to drivers with medical conditions.”

There was a happy ending, however, to one case - mine. When I called the DVLA in February to talk about the stories we were planning to tell, I mentioned that I had personal experience of this issue as I had been waiting since last August for a decision on my licence. A few days later, on the very day when we were to record the episode an envelope landed on my doormat. Inside was a new driving licence with a February 2029 expiry date. I probably drive less than a thousand miles a year these days and this might be my last licence, but I am grateful to have it.