Pour yourself a drink and pull up a chair: the Movers and Shakers are back in the pub! To open our fourth (yes, fourth – we can hardly believe it either) season, the gang gather to discuss their summer holidays – from Scottish ping pong to Alpine dystonia – and make a big announcement. Whilst pretending to be on their jollies, Gillian and Mark have been leading the charge with a brand new music video extravaganza, a Parky version of Gloria Gaynor's 'I Will Survive'. In addition to all this, we're joined at the boozer by Rowan Wathes, Associate Director of Policy & Health Strategy at Parkinson's UK, and Dr Kevin McFarthing from the Cure Parkinson's research committee. They'll guide you through the latest Parky news, from petitioning government to clinical trial breakthroughs!
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.
Charter update
From Mark Mardell
It’s hard to believe how far we’ve come with our Parky Charter. The man who can make our aspirations a reality says he could sign up to most of it. That’s progress. On the 4th December last year we met at Gillian’s home for a very convivial Christmas lunch, following a fractious, almost bad tempered, recording session thrashing out the wording of this document. There were heated debates on the use of Latin, the centrality or otherwise of a cure, even the capitalisation of the word ‘charter’. Sorry, Charter. Details are important but the central objective was always to grab
the attention of the politicians and policy makers and we’ve done that in spades.
It has been a hard and time consuming grind at times, but enjoyable at others from liaising with the brilliant teams at Parkinson’s UK and Cure Parkinson’s, to throwing ideas around for a virtual leaflet with our talented artist, Till Lukat, from pushing again and again for meetings with politicians to making that ridiculous, glorious film. That makes it all the more urgent that we do not sink into a self satisfied stupor, lolling about on our laurels but redouble our efforts - indeed, this is a call to action.
More of that in a moment. Let us pause for a recap.
Last world Parkinson’s day we presented a petition to Downing Street and although we couldn’t get him to meet us, the then Prime Minister Rishi Sunak did issue some warm words.
On the back of this Nick Mostyn arranged a very productive meeting with the Conservative Health Secretary, Victoria Atkin. Two things flowed from that, first an agreement that the civil servants would expand their knowledge of a condition they seemed to know very little about. Then Ms Aitkin pushed for a mention of Parkinson’s to be included in the Conservative manifesto. The words were pretty bland but every little helps.
But, to my mind, our real success was getting the next and current health secretary, Wes Streeting to come on the podcast and into the pub just a couple of weeks before the general election - right in the heat of the campaign. Once he’d agreed to make an appearance,
I was pretty convinced he wouldn’t turn up empty-handed but his commitment was much more substantial than I expected. He promised an extra 62 thousand neurological appointments a year to deal with the backlog and cut waiting time. It is very important we get your feedback on whether you’ve noticed any difference or not. Let us know!
At the end of the podcast we took the soon to be secretary of state through the charter point by point:
Speedy Specialists – as above. “I’ve ticked that box”
Instant information “I think I can commit on that’ he said.
Comprehensive care? “I absolutely agree with you on the importance of multi disciplinary teams.”
Parky Passport? “More DWP, but I’ll talk to Liz Kendall (work and pension secretary) about it”.
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.”
Less than three weeks later Labour of course won the election and Wes Streeting became the new health secretary.
It’s early days of course but already the Department of Health has commissioned a project to map the current UK research landscape by the NIHR Policy Research Unit in Exeter and involving Parkinson’s UK. The DHSS said:
"The prevalence of Parkinson’s is rapidly increasing and while symptomatic treatments are available there is no cure. People living with Parkinson’s need appropriate services, support and information, and better treatments to help manage their symptoms. Research should be targeted in ways that address these needs. Funders wish to understand strengths and gaps in evidence and resource allocation so they can optimally target research funding opportunities. Preliminary searches suggest that to date no exercise has been undertaken to map evidence gaps in relation to living with Parkinson’s disease."
In layman’s language this means an investigation into the shortfall and regional anomalies in treating Parkinson's. Behind the bureaucratic process is an exciting prospect - it would be pretty odd, after all, to uncover flaws and then not act to correct them.
PUK’s director of policy Rowan Waithes told us:
“we at Parkinson's UK, will be helping insert the voice of people with Parkinson's and that will just give us a really good platform on which to keep keep shouting and keep raising the profile”.
Another piece of good news – the Department of Work and Pensions has invited Parkinson’s UK to join the advisory board for those who assess benefits - and who currently show their ignorance of the condition by insisting on regular checks to see if people have ‘recovered’ from Parkinson’s. So again, an apparently small advance, which could mean immense change for the better. Rowan commented:
“we can use our position on that board, to make change happen, and it puts us in direct contact with the assessment providers, so we'll really be making your case”.
I hope after a lifetime covering politics I am not too naïve, but I feel optimistic that these incremental improvements are vivid signs that this Government has woken up to the importance of better care for Parkinson’s.
It’s now up to us to keep up the pressure. For instance, it is all very well and highly important to clear the backlog of appointments but the numbers on the waiting list will creep up again unless there are enough neurologists and geriatricians to do the job. That will be hard, because training the numbers we need is very expensive and there are not enough doctors who want to specialise in these areas. Even if there were bags of gold and queues of keen medics right now, it would take 12 years before the first one would see a patient. 2036.
So here’s a less daunting date -12th October 2024 - not only the PUK annual conference but Labour will have been in power for 100 days. So we’ll be doing a podcast, with a Parky’s eye view on their achievements and failures. Keep your stories coming – good and bad. And please please please, "like" & share our video on YouTube, write to your MP and sign our petition (when it's ready!).
"We Will Survive" - How it all began... Read Gillian's article here.
If you want to singalong you can find a copy of the lyrics here.
Watch some behind the scenes footage of the episode here...
Listen to Jeremy's reaction to our video here & listen to the fabulous Rowan Waites from Parkinson's UK.
Where did the idea for our video come from?! Watch here.
About the video - what you can do...
Head back to our homepage to "like & share" our video, send your MP a letter to support the Charter and sign up to the our new Petition.
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