We're back! But today's episode isn't coming to you from the Notting Hill pub – instead, it was recorded live at the Middle Temple. In this special episode Rory, Gillian, Nicholas, Paul and Mark talk through their Parkinson's journeys and are joined, from the gallery, by a number of special guests (you'll have to tune in to find out who but they include a star neurologist, a research director and a charity CEO) to kick off this the fifth – !!! – season of Movers and Shakers.
By Podot
Sponsored by Boardwave, recorded live at the Middle Temple
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.
A note from Mark Mardell...
The Middle Temple live event was tremendous—nerve-wracking, as these things always are, and my weak voice doesn’t exactly fill me with confidence. But it was an absolute tonic to meet so many supporters, and rather humbling to hear how much the podcast has meant to people. You can share in it by listening to the first episode of season five [here].
In one frustrating way, the night didn’t go as planned. We had hoped—expected, even—to unveil our new petition, calling on the Labour Government to implement the Parky Charter in full. This is a huge deal. If we get 100,000 signatures, Parliament will debate it, creating much-needed noise around Parkinson’s.
But because it’s an official House of Commons petition, we need their approval before launching. They’ve urged me not to discuss the process publicly, so I won’t—except to say we’re coiled like the tightest of springs, ready to slam the big red button and yell "Thunderbirds are go!!!" the moment we get the green light.
So where do things stand?
You might remember that last year we marched to Downing Street with a 20,000-signature petition, demanding immediate, decisive action to fix the gaping holes in care, support, and research funding for the 145,000 people in the UK living with Parkinson’s.
Rishi Sunak (remember him?) sent us a polite note. We met some ministers. The Conservative manifesto made a vague commitment to helping people with Parkinson’s.
And then… they lost the election.
Now we’re turning to a new Government—a new Health Secretary, Wes Streeting—who made some pretty significant promises on a certain award-winning podcast, just days before polling day. Here’s what he said on each of the key Parky Charter pledges:
SPEEDY SPECIALISTS
- "Strongly agreed", pledging an extra 63,000 neurology appointments a year to clear the backlog.
INSTANT INFORMATION
- "I think I can commit to that."
QUEST FOR A CURE
- "Can I get back to you on that? I don’t want to make an unfunded spending commitment, but I absolutely take the point."
COMPREHENSIVE CARE
- "I absolutely agree with you on the importance of multidisciplinary teams."
PARKINSON’S PASSPORT
- "More DWP, but I’ll talk to Liz Kendall about it."
We checked in with the Department of Health and Social Care, and they had this to say:
“We know patients with neurological conditions are waiting too long for treatment, but through our Plan for Change, we are addressing this directly.”
“We’ve already set ambitious but achievable targets to cut waiting times—including for neurological conditions—from 18 months to a maximum of 18 weeks by March 2029.”
“As a first step, we will deliver an additional 2 million operations, scans, and appointments across all specialities this year.”
That’s something, but it’s nowhere near the comprehensive strategy for Parkinson’s that we need.
So what’s next?
We’ll be back in Westminster—and Downing Street—on World Parkinson’s Day, April 11th 2025 to press our demands.
Keep an eye out for the petition. The second it’s live, we’ll be blasting it across Facebook, Instagram, Twitter, carrier pigeon—you name it. When that happens, sign it. Then get five friends to sign it too.
Let’s make some noise.
A transcript of Caroline Rassell's words at Middle Temple
"I think you guys did a brilliant job in terms of galvanizing how everybody feels around Parkinson's. It’s a condition that everybody ignores and particularly people in power and people who've got the opportunity to really shape your future. So, I think you did a great job in terms of raising that awareness, but actually, as you've said, Rishi has come and gone and we've got a whole new different set of players to work with.
I think we've got an amazing opportunity. You had Wes on the show which was brilliant. And Wes has got a 10-year plan and actually I think what we need to do as well as going back with the petition is to develop our own 10-year plan for Parkinson's, not wait for the government to tell us what in the next 10 years it will give people with Parkinson's. But we need to tell them, year by year, what changes we expect to see, whether that's in healthcare, whether that's in employment, benefits, whether it's in access to sport facilities, whether it's in ability to be able to get a blue badge.
There are some things that we can get now that don't cost anything and there are some things that will take time, as Wes has said. But you can wait until 202 9 for that, because actually they do need to get some staff in place, and that takes time. But I suggest that we kind of take control of this. I'm frightened because I haven't told [the Movers & Shakers] that I was going to say this, but we've got a real opportunity with the brilliant mouthpiece that you've got and the energy that you've got and the people in this room, we have to say what our 10-year plan is and we have to get the government to agree to that. And that's not just Wes, it's everyone. Every Secretary of State that is responsible for something that affects the lives of people with Parkinson's today, and we need to get that commitment that in 10-years' time this will be a very, very different place for people with Parkinson's. And I think that you’ve given us the platform to do that and now we've got to deliver it."
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