How do you make Parkinson's go viral?

Lessons from the #parkypetition100K campaign

My Movers and Shakers colleague Paul Mayhew-Archer has an excellent warm-up routine whenever we do a live event. He tells the audience ‘if you don’t have Parkinson's, on the count of 3 shout out “I’m a lucky bastard". If you do have Parkinson's, on the count of 3 shout out "I have Parkinson’s and it’s the sort that’s highly contagious."

Of course, you cannot catch the neurodegenerative disease Paul and I share along with around 150,000 people in the UK. But in recent weeks we Movers and Shakers have been puzzling over how to make a story about Parkinson’s highly contagious - in other words, how to make it go viral.

That story is our Parliamentary petition calling for the Parky Charter - our manifesto for better Parkinson’s care - to be implemented. A few weeks ago we realised that if we were to get to the target of 100,000 signatures by September 10, so triggering a Commons debate on the issues we have raised, then we needed to buck our ideas up.

A day out in Brighton, although miserably wet, convinced us that approaching people face-to-face was a good tactic and to our surprise young people, accustomed to QR codes, proved easier to recruit. We also put more effort into our social media activity and began identifying events where we and local activists might gather signups from a captive audience.

It seemed to pay off. In the four weeks from Sunday June 1st, nearly 18,000 people signed up at a rate of 639 a day. We went above 55,000 on Sunday June 29th and my calculations tell me that we need to keep on getting an average of 625 signatures a day if we are to hit our 100,000 target. When I started to do these sums I felt upbeat - we were getting there. But the closer I looked the more cautious I became. We started off by needing to get 100,000 signatures in six months. which is 182 days - and that adds up to just 550 a day. In other words we fell way behind what I think of as a cricket fan as the required run rate, and our sustained efforts in June have caught us up a little.

So we are examining our tactics in the battle to get to the target and asking ourselves what works and what doesn’t.

SOCIAL MEDIA

It seems obvious that in promoting an online petition social media should be our key weapon, but we have begun to realise that our efforts in this field have been somewhat haphazard with no clear strategy. We use mainly Instagram - you’ll find us here - and a Facebook group which has more than 5,000 members. We do have a Twitter (X) account which was dormant for a while as we tired of Elon Musk’s antics but is now pumping out petition news, and an account with TikTok, a platform which this former technology correspondent is embarrassed to say he doesn’t really understand.

Several of us use our own social media accounts to amplify the message - on my Instagram and Bluesky accounts, the petition battles with my rescue dog Sophie for attention, though sometimes the two themes combine.

But it was only a few days ago when a very smart former marketing director with Parkinson’s started helping us that we woke up to a couple of things. Like the need for a constant hashtag - we’ve settled on #parkypetition100K - to brand our posts, and that every message needs a call to action telling people to sign the petition and making it easier to do so.

But, to paraphrase the American marketing man John Wanamaker, at the moment we still feel that half the time we spend creating social media posts is wasted, but the trouble is we don’t know which half.

EVENTS

Our other big idea is to latch on to some big events over the summer and either turn up ourselves or get supporters to go along and seek signatures. Our first try was at Glastonbury where a couple of us had family and friends attending the festival. The problem was that we decided far too late to do this, failed to supply our helpers with Movers and Shakers branded t-shirts and did not really have a strategy for going viral.

There was one moment when I thought it might happen. I had met the owners of the Taste Tibet food stall at the Hay Literary Festival and, hearing they were going to be at Glastonbury, got in touch just before they left and supplied them with a digital leaflet they could print out. Suddenly on Thursday a message from them popped into my inbox with photos of the lovely Tilda Swinton at their stall signing our petition and blowing us a kiss..

Naturally, we spread this news far and wide on social media but there was only a modest uptick in signups on Friday. Never mind, we are hoping to get crack signature gatherers to other events that may be more receptive to messages about Parkinson’s, from Wimbledon, to the Lord’s Test Match, to Ozzy Osbourne and Black Sabbath’s final gig at Villa Park next Saturday. If you are going to any of these events, take our QR code on your phone, pluck up your courage and emulate Gillian Lacey-Solymar who on a recent Easyjet flight managed to coax. most of here fellow passengers into signing up.

THE PARKINSON’S COMMUNITY

But our best hope is to mobilise the Parkinson’s community and in particular the local Parkinson’s UK groups. After all, with 150,00 people living with the condition, when you chuck in their close relatives that makes half a million surefire signatures - doesn’t it?

There are certainly some amazing people out there. Linda Clarke, an indefatigable campaigner brimming with ideas, has propelled Bexhill to a commanding lead in the competition Mark Mardell devised to find the group whose Parliamentary constituency has the most signatures. Tony and Stephanie Colston from Lyme Regis are equally formidable, with Tony in the middle of his 100,000 push-up challenge and Stephanie printing hundreds of leaflets she has designed and making it clear she is determined that her area will overtake Bexhill .

Lorraine and David collecting signatures at the gym

Then there are Lorraine and David who wrote to tell me they were arriving at the gym half an hour early and leaving half an hour later than usual becuase they were stopping other members as they arrived or left and persuading them to sign. And they have yet another wheeze - on Friday they set off to cycle from Lancaster to John’O’Groats and then. on to the Hebrides on what they call their ‘Cycle for Signatures” tour. I cannot wait to see how many they sign up.

The trouble is, there just aren’t enough people like these doughty folks. The petition map which shows how many have signed in each constituency reveals that it is Southern England and in particular the South coast where most of the action is, with great swathes of the North, Scotland and Northern Ireland where there are only a handful of signatures.

Now, we know that one symptom of Parkinson’s is apathy and that may be part of the problem. But I suspect that a much bigger issue is that the majority of people living with Parkinson’s have never heard of our podcast, let alone the Parky Charter or the petition. So, if we are to collect the 43,918 signatures we still need as I write this, we need to make a lot more noise. If you have ideas about how we can do that, do get in touch. If you don’t, well just make sure you have signed and so has everyone you know.

And here is why it matters. A couple of weeks ago I mentioned on social media that I was having my annual - in fact, they are every ten months - meeting with my neurologist. A woman got in touch to ask if I had ‘gone private’ and when I assured her that I’d had an NHS appointment she told me that her mother-in-law had been diagnosed three years ago and prescribed drugs but had not seen a doctor since then. I was shocked to hear this but not entirely surprised.

Outside London, there are plenty of places where people have to wait years, first for a diagnosis and then for follow-up appointments. Keeping the government under pressure to fulfil its promise to make the maximum wait to see a specialist for diagnosis 18 weeks is what this petition is all about - so let’s not lose the opportunity to make ministers listen.

Please sign here!