This week we have a very special episode of Movers and Shakers: live from Downing Street! On World Parkinson's Day, the Movers and Shakers, along with representatives from Parkinson's UK, Cure Parkinson's and Spotlight YOPD took to the streets of Westminster to hand over the #ParkyCharter, a list of 5 demands (well, polite requests) to government. Join Rory, Gillian, Mark, Paul, Nick and Jeremy in that experience, and listen to the testimonies of the many listeners to the show who made the trip down to SW1A to show their support.
By Podot
Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. To read Rory's summary of this week's episode click here.
TO READ THE LATEST UPDATE ON THE PARKY CHARTER FROM RORY CLICK HERE
Watch us as we hand our Charter in to Downing Street!
Mark's Musings...
The Prime Minister wasn’t in and wasn’t going to see us but it still sends a tingle down the spine when you march up to that big black door. Even when the march is slow and unsteady.
As a political reporter I’ve spent a large part of my life kicking my heels in Downing Street, waiting to shout ‘are you going to resign, Minister?’ at some hapless errant politician. Even more time, rushing out of an up-to-the-wire edit to grab my one minute thirty seconds of fame by bellowing into a TV camera for the Six o'clock news. Then repeating it all again for the Ten. So, although I hadn’t been there for years, the place was very familiar. It was the job, the role that was so very different - this time I wasn’t a neutral observer but an active participant. Making demands, campaigning, petitioning.
I was already pretty tired by the time we staggered up that world famous street, having got up early to be on BBC Breakfast, live from my own dining room (the first and only time “live from Banstead” will appear on your TV screens, I’ll wager). Then up to town to be on the other side of the microphone in another home from home, the ‘World at One’ studio. So I arrived weary, but buzzing with excitement and righteous purpose. A vital part of this mood was the backing of three charities and above all, those fans of the podcast who had turned up to support us. We the (C list) celebrity spear head, they the Generals and the army.
Outside the black steel gates, jostled by those hurrying down the narrowest part of Whitehall, photo bombed by teenage French tourists, we all met to pose for pictures clutching boards detailing the Charter, in our house colours and our distinctive black and orange logo. Like some weird variation of wedding photos we came together in various combinations: just the six of us; then 6 + 3 charity leaders; 6 + 3 + charity workers; passing parkies and finally rude gallic teen photo bombers. A very solicitous police officer took us through security, kindly telling us to take as much time as we needed to take pictures. When our social media driven desire for just another shot was sated and JP and the Judge had traded enough schoolboy Latin quips, The Moment arrived.
Now, when you go into Number Ten for real, the door swings open as if by magic. But this is theatre for the cameras, so Jeremy, holding a purple cardboard box containing 20K+ signed petition, knocked with purpose and eloquence. The man who opened the door lingered while more shots were taken, before graciously accepting our purple box. More interviews. Then out the gate, to be greeted by cheers.
It was a big day, a day we had planned for ages. Actually for the anarchic collective that is the “Movers and Shakers”, ‘planned’ might suggest more organisational capability than we possess, but we were all there, on time, and no one forgot their ID. We couldn’t have done it without Parkinson’s UK. Or rather we could and would but it would have been a shambles. And the people who had travelled to meet us and support us were critical. When you’ve prepared so long, debated and written the lines, then thought about how to deliver them, you can lose touch with passion and purpose. I felt tongued-tied and humbled by people’s praise and gratitude for the podcast but also energised, proud and filled with fresh fury. And so to the Red Lion pub, even more crammed and unsuitable for Parkies than the Ladbrooke Arms where we record the podcast. In this hallowed Westminster institution we were feted like rock stars, signing a T shirt here, shaking hands there, exhausted overwhelmed , beaming.
Will our stagger up Downing Street change things? I hope so, but I don’t expect immediate victory. It was a big day but the first of many days of slog, not an end but a beginning. We may be slow, we may stumble, we may stagger but we will not fall, we will not fail.
Take a look at some of the photos from this spectacular day!
Photos credit: Matt Crossick/PA Media Assignments
Meet Carl Beech
CEO of Spotlight YOPD
Photo credit: Matt Crossick/PA Media Assignments
“When I was diagnosed with Young Onset Parkinson’s, I’ll never forget the words, incurable, degenerative and progressive ringing in my ears as I left the consultants room. I knew that life was different now, and looked for help.
The Movers and Shakers podcast was the first thing I listened to and yesterday being the new (ish) voluntary CEO of the charity spotlight YOPD I had the chance to meet them!
Being an Essex boy born in Dagenham (we prefer to say (Darshenharm) I didn’t think as a child, my first conversation with a Judge would be extremely friendly and about the advantages of Opicapone and take place outside the gates of Downing Street! Parkinson’s brings us all together!
Jeremy very kindly obliged for a selfie that I sent to my Dad and Paul even complimented my tattoos! I discovered that Rory and I both have a missing front tooth (which led me down a rabbit hole on Parkys and bone density at 1am in the morning), Mark and I swapped some banter and it was so good to see Gillian again having met up before with my predecessor Gaynor for lunch.
I had met my podcast heroes whose words I clung onto in the early months of diagnosis.
I have Young Onset Parkinson’s which is what they call Parkinson’s for those diagnosed around age 50 and under. It’s a challenge. Having to keep working with declining health and no easy access to financial help is a daily battle. Having to fight and often failing to get the help needed is soul destroying. When the 5 points of the Parky Charter were formulated I punched the air! It’s time for change. It genuinely was an incredible honour to be standing together as 3 charities, with the Movers and Shakers to ensure all those diagnosed get the help and support they desperately need.
It was genuinely emotional to watch the petition go through the gates. It was also so encouraging to be unified as charities and podcasters behind the common aim of better help for all. Many people with Parkinson’s (myself included) feel unseen, misunderstood and unheard. What the Movers & Shakers are doing and what we are doing together is going to make a huge difference.
By Carl Beech