Each week Rory Cellan-Jones guides us between the laughs and moans in the pub. Here is Rory's summary of this week's episode.
Should our podcast about living with Parkinson’s have a mission? Does anybody care what six random people - even if they include a retired High Court Judge and the most feared TV interrogator of the last 30 years - think about anything? The final episode of series 2 of Movers and Shakers grapples with these existential questions as we consider whether we should publish a Parky Charter, a call to arms for the Parkinson’s community demanding the government and the NHS act to improve our care.
“We've had so many letters, with people saying that at diagnosis, they were given insufficient information afterwards, they can't see their neurologists every year, all sorts of problems. And so the idea was to put together a charter, and to say to the government and the NHS, look, we as people with Parkinson's would like some change here.”
Gillian has prepared her charter, building it using as a mnemonic the latin phrase Carpe Diem - seize the day - her personal philosophy. So the C stands for “cure”, A for “access” and so on. But as befits the anarchic collective we are - the judge thinks he’s in charge but he really isn’t - the very idea of a charter, let alone what to put in it, soon comes under attack.
Jeremy Paxman questions whether anyone will listen to us: "What we have to realise is we can only complain, we have no authority over ministers or health officials, or anyone else."
"What is the strategy?" asks Mark Mardell. "Are the aspirations just things that will be generally nice or things that we think can be adopted and would make a difference?"
Gillian points out that "nice" is apt - NICE (National Institute for Health and Care Excellence) has issued guidelines on the treatment of Parkinson’s but often they are ignored.
And Paul Mayhew-Archer objects to the first item on Gillian’s mnemonic: “I actually want to question the cure thing. Because I think the money spent on trying to find a cure is a lot of wasted money - it could be spent better on looking after the people who have Parkinson's.”
But Judge (retd) Nick Mostyn is more supportive of the idea - he thinks we will be taken seriously: "We are all powerful or have been powerful. We have got sharp elbows, we have got a substantial audience that listens to us, and we are in a position to exercise influence."
The judge has spent some time drafting Gillian’s Carpe Diem charter into a legal contract between people with Parkinson’s and the state, with each. having their own responsibilities. There is broad agreement that this is a bad idea - we don’t see why we need to promise to behave ourselves, we don’t need any legal mumbo jumbo and ,above all, “Quidquid agis, devita Latinam” - whatever you do, avoid Latin.
But having got that off our chests, we begin to contemplate a simpler clearer charter - perhaps five demands for better Parkinson’s care, and no mnemonic. Jeremy is clear about the number one demand - everyone should be entitled to a diagnosis within a certain time. There are nods around the table - we have all been shocked by stories from listeners who suspect they have Parkinson’s but have to wait a year or more for an appointment with a neurologist. Surely everyone should be guaranteed the chance to see a specialist within six. months?
We bat round some other ideas. We like the idea of clear information in the form of a leaflet being given to everyone who is diagnosed with Parkinson’s rather than a brusque “it’s a degenerative disease and there’s no cure.” Nick Mostyn is keen that people are given what he describes as “holistic” treatment - not just offered pills, but advice about exercise and diet, insomnia and mental health.
We agree that Parkinson’s nurses play a vital role and everyone should have access to one. We also admire the campaign Parkinson’s UK has been running to make sure Parkies get their drugs on time when they are in hospital and some of us want that in the charter.
But as the debate continues about exactly what to put in and how we would measure success we begin to realise that we are not going to get this sorted in one session. In any case, the Movers and Shakers Christmas lunch, kindly prepared by Gillian in whose home we are meeting, awaits us.
So we decide to set you - our audience - a challenge. What five demands should go in our Parky Charter? And as Paul Mayhew-Archer says, we want to hear not only from people with Parkinson’s and their families and carers but from the neurologists doing cutting edge work in the quest for a cure.
Mark's Musings...
How did we get here?
This episode was unusual for a number of reasons. Firstly, because we could stretch out luxuriously - we weren’t crammed round an oblong table at the pub but instead in the spacious surrounds of Gillian’s rather lovely North London home. She had invited us there for the Mover and Shaker’s first ever combined Christmas party and recording session. Secondly, because there was some seasonally appropriate music. I’d asked Thomas Gisby, who has early onset Parkinson’s, to send us a tune to get us into the Christmas spirit.
But the podcast itself didn’t exactly stay very festive. Indeed, it was the most fractious,
most argumentative we've ever had. Some background:
Gillian’s long cherished idea was that we should use our clout to push for improvements in the way we Parkies are treated via a Charter. She first raised it publicly in the special episode at the Parkinson’s UK AGM in Birmingham. Sir Nick, who was too ill to make it to the Midlands declared from his sickbed that it musn't be called a Charter because charters were granted to corporations by the monarch. Jeremy also had a leave of games on grounds of illness but we channelled Paxman’s favourite expletive, followed by “off, Judge” to urge Nick to cease-and-desist all this learned stuff.
I was initially worried about the whole idea of a charter, whatever label we plonked on the notion, not because I thought it was a bad idea in itself, but because of bitter experience : a previous attempt with another loosely knit group to put down on paper our core aims and beliefs had lead to a falling out and eventual extinction. I’d got over this hump but as Gillian set out her plan - see here - on the Movers & Shakers whatsapp group and Nick wrote a legally watertight version - see here - I was concerned and wrote :
‘I am a bit worried by how well developed (another group’s) Charter is – to have a well-designed acronym suggests more than a starter for 10.”
Later, Gillian, who like most of us Six is wakefully productive when UnParkied people are in bed sent this note:
THE PARKA CARTA – Views at 4am?
IS THERE A PROBLEM IN HOW PD IS DEALT WITH?
Yes
HOW DO WE KNOW?
Hundreds/thousands (quantify?) of people tell us directly.
IS IT UP TO US TO MAKE A DIFFERENCE?
If not, then who?
SO WHAT SHOULD WE DO?
I don’t know. Let’s discuss it on Monday or Wednesday next week at 5 pm.
HOW ABOUT A SUGGESTION?
The mnemonic Carpe Diem?
MNEMONICS ARE SILLY, HOW ABOUT SOMETHING ELSE?
Be my guest…
CAN IT BE LEGALLY BINDING?
No, nor should it be. Otherwise no one from government will sign it.
DOES THAT MAKE IT USELESS?
Not if you believe in the power of pressure.
Not if you believe in the power of holding people to account.
Not if you believe in the power of discussion.
Do we?
SO SHOULD WE DO SOMETHING?
Definitely yes.
WILL IT BE PERFECT?
Definitely no.
AND IF WE DON’T?
We are breaking the trust that people put in us
SO, SHOULD WE MAKE IT THE SUBJECT OF AN ENTIRE EPISODE?
Yes. .… But that’s just my view.
Gillian also went through the official guidelines from the National Institute for Health and care excellence (NICE) - see here - and found they were on the same page as us - but it didn’t make any difference. Read Gillian's thoughts here.
So that’s a glimpse behind the scenes at what led up to our disagreements about length, Latin and longing - or not - for a cure.
Just after this episode was broadcast one of our listeners, Sharon, wrote to us...
Thank you for your brilliant podcast (flattery will get you everywhere). My mum, Josie, was diagnosed with Parkinson's in 2021. She will be 85 years old in April and is doing really well which is partly attributable to us applying diet and exercise elements as gleaned from various episodes of the podcast. My mum says that she had the same experience as many in that there was little information to accompany her initial diagnosis. It is for that reason that I have written a draft guidance, for those newly diagnosed, which could be supplied by the neurologist. I am not from the medical fraternity but was inspired after seeing how my mum's quality of life has improved since following the relatively simple guidance and my listening to the podcast on the Parky Charter, the prospect of which is very exciting.
We agree so here it is: Draft guidance for newly diagnosed people with Parkinson's.
Comments