Movers and Shakers: We Will Survive!

New series of podcast starts with a bang

Movers and Shakers, the podcast about living with Parkinson’s, is back for a new series - and the opening episode focuses on our latest shameless attempt to win attention for our Parky Charter.

This manifesto for better Parkinson’s care took off in the Spring, when we marched up Downing Street with a petition signed by more than 20,000 supporters.

Then, during the election campaign Labour’s shadow health secretary Wes Streeting came on the podcast and made a promise to fund 62,000 extra neurology appointments, a step towards meeting our first demand for speedier access to the specialists who can diagnose and treats Parkinson’s.

Over the summer there were more positive developments for the Parky Charter but our thoughts turned to the very big challenge of keeping everyone interested in the campaign.

Then it was that Gillian Lacey-Solymar, dedicated insomniac and poet extraordinaire of the small hours, came up with a crazy thought - why not make a music video? She admits that her original idea to work with “I’ve Got A Little List” from The Mikado by Gilbert and Sullivan was a little wide of the mark.

“I talked to various people, and they said, no, no, you're already regarded as elitist. for God's sake.” So she happened instead on Gloria Gaynor’s “I Will Survive” - and then once she had adapted it as an anthem for the Parky Charter, things began to happen at breakneck speed. A licence to use the track was obtained, and a team of extraordinarily talented music and video professionals was assembled led by a former BBC Light Entertainment legend Geoff Posner.

All of these fine people gave their services for free but there were still some costs and we are deeply grateful to the charities Parkinson’s UK, Cure Parkinson’s and Spotlight YOPD not just for some vital funding but also for their active participation in the video. Staff from all three charities sing on the video along with people from across the Parkinson’s community along with the Nutcrackers, a Glasgow-based band made up of neurologists and neurosurgeons.

Not all of the Movers and Shakers were enthusiastic about this project when it was mooted. I admit I was one of the sceptics until the day we gathered at a recording studio in Haywards Heath and I began to sense just what an exciting way of telling the Parkinson’s story this could be.

Jeremy Paxman, ever the contrarian, remains unconvinced. Asked on the podcast what he thinks of the video he replies;”Not much!!” It has to be said he had not actually watched it at that stage and when we showed him it later, he was more enthusiastic about our efforts. And careful listeners may spot that the first voice heard on the video is that of Mr Paxman.

But, as we go on to discuss with Rowan Wathes of Parkinson’s UK, the whole point of this project is to continue to build momentum behind the Parky Charter. Rowan, who has been central to our efforts to connect with politicians and Whitehall, had news of two successes over the charter.

Following our meeting with the Conservative Health Secretary Victoria Atkins, where we had been astonished to hear that the Department of Health and Social Care did not really have any data on Parkinson’s, the department has launched a project to map the state of research into the condition and look for “evidence gaps.’ Rowan explained that Parkinson’s had always been a “Cinderella” disease so this move, continuing under Wes Streeting, was important:

“The fact that they've committed to looking at it in detail and looking at where the funding is going, what the gaps are, and what we should do in future is really good.”

The other good news is that Parkinson’s UK has been invited to join the advisory board for benefits administrators. These are the people who among other things assess whether someone with Parkinson’s is eligible for the Personal Independence Payment (PIP) is a benefit for people who are under State Pension age and need help with daily activities or getting around. We have heard horror stories of assessors apparently believing claimants can recover from their condition, so it is good to hear that the charity may be able to put them right.

We end this opening episode by looking forward to what could be really important news about new drugs in the autumn. Dr Kevin McFarthing, a leading research scientist, a member of the Cure Parkinson’s research committee, and a ‘Parkie’ himself, sets the scene, telling us that there are 136 drug trials in progress, of which 60 are disease modifying, and 76 are about the treatment of symptoms. He explains that by “disease modifying” he means a drug that can slow, halt or reverse Parkinson’s - something that no medication has achieved so far.

Out in front in the race for this Holy Grail is the diabetes drug, Exenatide with the results of its Phase 3 trial expected imminently - I wrote this week about the growing anger some participants feel about the delays in telling them anything. If the trial does prove successful, it is not clear that we will all get the drug quickly - regulators will still have to approve it and Exenatide is going out of fashion as a diabetes drug, so it may be hard to find a manufacturer for it.

So, plenty of news and issues for Movers and Shakers to grapple with over the coming months as we pursue the aims of the Parky Charter. And stay tuned for a Parliamentary petition about the Charter where we will be going for an insanely ambitious target of 100,000 signatures so that we can get a Parliamentary debate.

Don’t forget, the Movers and Shakers website is the place for loads more information about the podcast and you can email us with your ideas, bouquets and brickbats at feedback@moversandshakerspodcast.com