Movers and Shakers: Parkinson's UK
This week we have a special episode of the podcast, recorded live in Birmingham at the AGM of Parkinson’s UK. It’s a show packed with information about the U.K.’s largest Parkinson’s charity, and we get deep into how it’s run and the issues we all want to confront as we tackle a condition that gets far too little attention at the moment.
Sadly, three of us were unable to make it to Birmingham. Jeremy Paxman had Covid, Nick “Judge“ Mostyn had another kind of lurgy, and I was laid low by an accident that saw me fracture my elbow.
But Gillian Lacey-Solymar, Mark Mardell, and Paul Mayhew Archer did an excellent job, making for an entertaining and informative 40 minutes in front of a live audience.
Their guests were the charity’s chief executive Caroline Rassell and its chairman Gary Shaughnessy. Both were asked some challenging questions about areas where Parkinson’s UK is failing to make the impact we feel it should and neither was shy about challenging the Movers And Shakers to play their part in raising the profile of the condition. We have our marching orders and will be turning up in Downing Street next April on World Parkinson’s Day.
It was shocking to hear Caroline say that in her previous job as an NHS executive she had never once had a conversation about Parkinson’s.
Gary Shaughnessy, himself a “Parky” and an inspirational fundraiser, wants to change the image of Parkinson’s as an incurable disease whose victims should just prepare for an inevitable decline:
“The reality is there's a hell of a lot that people can do. Everyone I've spoken to who's had Parkinson's has a gift or an ability of some form - you see brilliant people using their spare time, and with branches and groups, to use those capabilities.”
There followed a spirited debate with the guests and members of the audience about Gillian’s idea for a Parkinson’s Charter to be presented to government and what should go in it. A limit on waiting time between neurologist appointments? A standard level of care across the country?
I could write a lot more about this episode but typing with one finger of my left hand is painfully slow. So please listen and send us your thoughts about the charter either in the commments or to feedback@moversandshakerspodcast.com.
I will write soon with further thoughts about what I have learned from my fall and its aftermath.
We'd be happy to supply a Samba band to accompany you to Westminster next April. We may have quiet voices but we certainly make a noise and draw attention. Apart from good exercise, some fun and driving some neuroplasticity, this is raising awareness is another benefit of SParky Samba
Somehow i have forgotten where to post comments on the podcast, which i am pretty sure i have done before. It must be my Parkinsons!
Anyway i listened with interest to the October 21st episode about the charity, ie. where do they get the money from, and where does it go. I wish speakers from the charities, in the interests of transparency, would start their piece with "i am so and so, (title) and I draw £? 0000000 from the charity as salary and allowances. It seems that there is a general (mis) conception that some charities distribute rather high percentages of their income to employees.