Movers & Shakers: A Parky Charter

A charter for better treatment for people with Parkinson’s - that is what the first episode of series 3 of Movers and Shakers is all about. The hit podcast about living with Parkinson’s is back and it has got a mission.

We ended series 2 with a rather argumentative episode about Gillian Lacey-Solymar’s idea that we come up with some kind of manifesto. Her idea was to have a nine point charter using as a mnemonic Carpe Diem - the Latin phrase “seize the day” which is her personal Parkinson’s philosophy.

But there were a number of dissenters from that plan - “no Latin!’ said the judge - and when I suggested a more simple five point charter that won grudging approval. But what should those five points be? Over our winter break we all came up with ideas - and also heard plenty from our audience. So this episode sees us hammer a “Parky” Charter into some kind of shape and ponder what to do with it.

Our guest is Caroline Rassell, chief executive of Parkinson’s UK. It was during our live episode at the charity’s AGM that Caroline urged us to use our voice to join the battle for better care, a call she repeats in our session back in the pub: “You're in a great place - if we want to make a case around better care for people with Parkinson's, you have a real opportunity to get your voice heard.”

We also have recorded interviews with a Parkinson’s group from Goole in Yorkshire telling us their ideas for what should go in a charter, with a member of a group which came up with a charter for pancreatic cancer patients, and with Ted Thompson who has been leading the effort to get the US Plan to End Parkinson’s through Congress.

We come away from these interview with some ideas for our charter but above all with the conviction that its primary purpose must be to raise the profile of Parkinson’s amongst policymakers. “I think the point of this is to put pressure on politicians and organisations like the NHS,” says Mark Mardell.

There. is still, however, one dissident voice - Jeremy Paxman thinks. we have an exaggerated sense of our own importance:”I think you're all barking up the wrong tree, I think you're all whistling in the wind. I can't see what the point of this is.”

We forge on nevertheless with selecting our five themes for the charter - and on the most important point we are all, even Jeremy, agreed. We have been getting so many emails from listeners who get referred by their GP to a neurologist for a possible Parkinson’s diagnosis and then wait a year or more for an appointment when the NICE guidelines say the maximum wait should be 18 weeks.

Some say they have ended up paying for a private consultation Then once diagnosed “Parkies” can wait more than a year between appointments with their doctor. So number one in the charter is timely access to neurologists. Two other points - better information to be given to people on diagnosis and a big increase in the pitiful amount the government invests in Parkinson’s research - are also agreed without much fuss.

Our excellent producer Nick Hilton has knocked up this graphic - wording may change but it gives the basic idea

Then we need to pick two more from a clutch of ideas - a Parkinson’s nurse for all, getting medication on time in hospital, a multidisciplinary team available to advise on diet and exercise, a Parkinson’s passport and better training for everybody from doctors to those assessing people for benefits. In a surprisingly cordial and collegiate manner we merged several of these ideas and came up with our final two.

We want everyone to have access to a team which includes Parkinson’s nurses, physiotherapists, nutrionists and speech therapists and we would like to see a Parkinson’s Passport which would make it easier to get access to benefits, free prescriptions and other services.

So there we have it, the Parky Charter. Now what do we do with it? We discuss heading to Downing Street with it on World Parkinson’s Day in April, and Paul suggests we bring London to a halt by having a mass freezing attack halfway across every zebra crossing. Jeremy continues to insist that we will be whistling in the wind and asks Caroline Rassell why Parkinson’s UK, which has been plugging away at the same issues, hasn’t “had any bloody results?”

“Because we haven't got people like you standing up and making the noise that we need to make - we're very polite.” She urges Jeremy to “get aggy” - he looks puzzled but when the word is translated and when Gillian says “nobody gets as angry as Jeremy” he appears to have a change of heart. “I’ll be with you, of course!” So, Whitehall, be afraid be very afraid. We have a charter we would like you to see and if you ignore us we will unleash the aggy Paxo.

Great news - Movers and Shakers now has a website with all sorts of information about the podcast. And don’t forget if you want to make any comments or suggestions our email address is feedback@moversandshakerspodcast.com.