By Gillian Lacey-Solymar
Part 1 - The Charter
It all began with the emails. First they trickled in; then came a steady stream and then a bit of a flood. Trickles can be ignored. Floods cannot. It turned out from our listeners that many of you – far too many – are not receiving the most basic care for your Parkinson’s Disease: waiting far too long for appointments with consultants, (2 years is not that unusual), being unable to see specialist nurses because there are pitifully few of them. Some hospitals have no specialist nurses at all associated with them. And it doesn’t end there. If you do get to see a doctor for a diagnosis, much of the information you need is not given to you as they simply don’t have time. You’re left on your own. People talk about an overwhelming sense of loneliness and yes, even despair. When I was diagnosed, I was in deep shock having thought that I was suffering from a trapped nerve. “No” said the specialist. “You are on the Parkinsonian scale.” When I asked what that meant he looked at his watch, and then pronounced the unforgettable words: “I suggest you look it up on the Internet. There’s a lot of information there.”
We “Movers and Shakers” had never intended to be a campaigning organisation. Originally, we hadn’t even had any intention of doing a podcast - nothing more than a group of friends with the same condition who came together in the pub for a laugh and a moan about having this miserable illness. But notwithstanding the anecdote above about my diagnosis, we soon realised that we were treated very well compared to the rest of the Parky population. Why? I’m not sure. I think it’s a combination of living in or near London or nearby and the jobs we used to do (if you are a regular listener you will know that five of us are ex-BBC journalists and one is a recently retired High Court judge) and a determination not to stop until we had what we needed. For us “no” meant “maybe” and “maybe” meant “yes”.
The plight of many of my fellow Parkies began to haunt me. How could this be happening? And given this clearly was the situation how could we just carry on doing nothing about it? It became one of my key obsessions in the middle of the night. Now if you are a Parkie yourself you will know that those two concepts, obsessions and being awake in the wee hours, are both Parkinsonian traits, the first primarily due to the medication and the second due mainly to the illness itself. Mind you, these things are hard to unpick. Anyway there I was lying awake and very conscious of so many people having such poor care. Someone in a previous discussion had mentioned the need for a charter for Parkinson’s. I leapt on this idea , formulating ever more comprehensive and therefore ever more more complex versions of a charter for a cure and better care. By coincidence we had a magnificent painting in our sitting room which had the snappy title: Magna Carta. Night Sky, June 15th 1215 by Jill Tattersall. To translate – this was supposedly the configuration of the stars and planets on the night the Magna Carta (great Charter) was signed. My nightly writings began to take place in front of this painting. It was inspirational and yes, no doubt somewhat bonkers. I blame the Parkinson’s.
We devoted our pre-Christmas episode entirely to the topic of the charter. I had volunteered to present my idea to the group. It was based on our motto at the time of Carpe Diem (seize the day). It was a mnemonic whereby each letter stood for something that we wanted. Here it is in all its classical glory!
CARPE DIEM
C – Cure. More money needed for research. Far more
A – Access to a consultant and other professionals, not less than once a year.
R - Regional equality The State will smooth-out postcode lottery.
P – other Professionals a multidisciplinary team should look after PwPs
E – Educate everyone – especially employers. Ie raise awareness
D - diminish Depression
I - isolate Isolation
E - Exercise energetically, and Eat effectively
M - Medication especially in hospital
I then added a final flourish and said flourish was I think what tipped the “boys” over the top. NUNC. (ie “now” in Latin) which supposed to both give it a practical slant ie to emphasise the urgency OF building up more neurologists (we are a ludicrous 44th out of 45 countries in Europe currently).
N – NEED
U- URGENT
N- NEUROLOGIST
C- CARE
I liked it, felt it tripped off the tongue with a certain erudite elegance. Alas the rest of them did not. Jeremy as he is wont to do, went straight for the jugular.
”Terrible…hopeless” he said. No he didn’t say. He sneered. Anyone from Michael Howard to Wes Streeting (who admitted to us that he’d been “Paxo”ed when head of the NUS) who has suffered the ignominy of his withering put-downs would agree that this was hardly a ringing endorsement.
I expected the others to rally round gallantly with support. Alas no.
“A cure? Why would we want a cure,” said one
“What is the status of these points? “ asked another. “Is it merely aspirational?”
.“Is it measurable?”
“What is its status legally?
“We need precision. Exactly how many nurses re we calling for?”
Questions flew thick and fast with an undertone of “Come, come. We need answers”
The turning point came when Nick (the judge) proclaimed in his best King Solomon style. “Can we agree that what Gillian is asking for is not unreasonable?”
“Woohoo - an ally!” This was followed up by Rory with an excellent suggestion of simplification - why not confine ourselves to 5 points? We were off. We started to discuss the key points and, in fact, at that one sitting we developed 3 of the 5 points which made it into the final version. Not bad.
After a bumpy launch HMS Parky Charter was beginning to look seaworthy. The boys were on board. We weren’t yet out of the harbour but we were all pulling in the same direction and the sun was shining.
With the backing of the whole team (even Jeremy was coming round with a distinctly Eyore-ish reluctance), the idea began to take-off in a significant way. Within a couple of months we had a fabulously simple draft (Rory thank you) we had the best legal mind checking out its legitimacy (Nick thank you), a website, which explained everything and encouraged participation (Mark thank you) and a film that would be made shortly (Paul thank you). And of course none of this would have happened without those withering comments (Jeremy thank you) and if we go back to the very origins of the charter - your thoughts and strong expressions of “something has to be done”.
We were doing it, or at least trying.
Actions across the pond were helping the general direction of travel. A bill was being debated in Congress to “End Parkinson’s”. This was going to be significant. When something similar had been launched for Alzheimers the amount of money flowing towards reseach had increased more than 10 fold. We were not alone in our efforts to make a noise about his wretched illness and to try to bring it to the forefront people’s consciousness.
Before we leave the harbour entirely let me mention a few others who have been instrumental in pushing our boat out onto fair waters. I have talked about “the boys”. I have not yet mentioned “the girls”. The former may be a somewhat belligerent lot but boy are they clever. And well connected. And “the girls”? Well, equally smart, and girl, are they phenomenally feisty. Each is a force to be reckoned with. So who are they?
It was decided that we should get a petition going in parallel with the charter to show support for it. Parkinson’s charities all leapt on board with gusto and at the time each was run by a woman. The largest Parkinson’s charity is Parkinson’s UK. Its indefatigable ubiquitous CEO is Caroline Rassell . She plays a large role in this story. In fact she caused it.
In November 2023 all the Movers and Shakers were invited to do a live podcast from PUK’s AGM in Birmingham. We were interviewing Caroline when suddenly she turned the tables. She looked us squarely in the eye and issued an ultimatum. “So what are you going to be doing on April 11th?” This seemed a slightly random question and date. I squirm now to realise that only 10 months ago most of us had no concept of World Parkinson’s Day. No idea of its significance nor that it fell on April 11th It is Caroline’s challenge that provided the fuel for the entire journey.
As soon as Cure was a firmly back on the agenda the forensic and insightful CEO of Cure Parkinson’s Helen Matthews was hugely supportive: generous with time and her superb ideas and ultimately also forthcoming with funding when it was truly needed. The last was Gaynor Edwards, who first set up Spotlight YOPD. But her delicate frame hides a woman of fire. Diminuitive in stature, she’s a giant when it comes to impact.Never. Each of these three women I feel proud to call a friend, but particularly Gaynor – a constant beacon of light, offering advice readily at the strangest times of day (or more accurately, night).
With both the “boys” and the “girls” on board, what could possibly go wrong?
PART II – The Song
So, winter finished, the nights grew shorter and we were met with a wonderful surprise. In March it was announced that we had won the Podcast of the Year. Not in the healthcare category, as we first suspected, but out of all 50,000 UK podcasts (if you believe that rather high number) we had come top. We were thrilled! That certainly gave us a boost and a good independent accolade. On the heels of March came April , and on the 11th we had decided that we were going to march onto Downing Street and present our charter and the petition, which by now had well over 20,000 signatures. The judge (who is the best connected out of us all) started pulling strings. But nonetheless with every string pulled, when we finally went, Rishi was not in. Ironically, he was somewhere else in London electioneering on healthcare issues. We handed in the petition and the charter to a po-faced doorman and that would’ve been it, except for the fact that Jeremy decided to hold an impromptu press conference. We had decided we would have an optimistic stance . He announced that Parkinson’s makes you wish you had never been born. Dramatic words and certainly not the cheeriest, but from the point of view of publicity, he could not have said anything better. His comments got us over 200 articles and broadcast slots – an unexpected triumph! Once again fate had intervened to help us out… The awareness of Parkinson’s notched up a few percentage points.
The election was also good to us. Victoria Atkins, the then Health Secretary, invited us into her office in Whitehall. She impressed us all with her thirst for knowledge about Parkinson’s, although less impressive was her department’s lack of hard numbers. How many people have Parkinson’s in the UK? Don’t know. How many have Young Onset? Sorry, we don’t have those numbers. Why are we 44th out of a list of 45 European countries when it comes to the number of neurologists per head? Er… She seemed particularly interested in this question. She turned to one of her team and asked them to provide answers before the next meeting, but that next meeting was not to be. The election was called and pretty rapidly it became evident that it would be the other lot who would be in power.
It Is worth mentioning that Victoria did take the time to do a zoom call with us. Her counterpart, Wes Streeting, was harder to pin down but much to our surprise, he agreed to a meeting as well in the final run-up to the election. But, ever the canny politician, he didn’t want a private meeting, no, he wanted to be in the pub on the podcast. He was a good interviewee.
Obviously, it is easier to talk when the mistakes can be blamed on somebody else. He mentioned starting afresh and gave us various promises such as that there will be 62,000 new appointments for Parkinson’s and other neurological illnesses. This is a big deal. We need to make sure that his feet are held to the fire and that his words turn into actions.
So in short, it is now our job for now (other than our primary purpose, which is to make interesting, entertaining and useful podcasts about Parkinson’s) to ensure that the charter is not only kept alive, but actually implemented. Who knows, maybe like the US we will try to introduce a bill one day into Parliament To End Parkinson’s Disease. It seemed an impossible concept six months ago, but things are moving quickly . We are trying to expand the petition that we originally sought to get signed (we had almost 25,000 signatures but it was clearly done under the old government) to 100,000 signatures. This would mean that it automatically would be debated in parliament. So far nothing similar has happened.
Parkinson’s has been hiding in the closet or maybe it would be a more accurate analogy to call it a Cinderella illness, hidden in plain sight. One way or another it hasn’t been talked about until now. At last this is changing and we’d love it if you listeners were at the forefront of this….
Anyway, I was rushing ahead. To get the 100,000 signatures we had to have something that would put the charter back in people’s minds. I racked my brains and came up with the idea that we should take a song that everyone knows and redo the words to reflect both the funny and sad sides of Parkinson’s. Oh, and the song had to be out of copyright too. The challenge was to make it memorable – full of pathos but also full of fun. I started with “I’ve got a little list” from Gilbert and Sullivan’s Mikado. Here’s my first verse of a Parky version:
As some day it may happen to you or even meI've got a little list — I've got a little listOf all Parkinson’s symptoms – those you can and cannot seeAnd they never would be missed — they never would be missed!There's the stiffness and the shuffling and the dribbling as well
The pain if you have young onset - it really hurts like hell
Constipation and depression, not to mention lurid thoughts
You’d think this was an illness which somebody really ought
To move up all waiting lists in search of a fine cure
But of that we can’t be sure, we just cannot be sure.
With great enthusiasm, I shared the idea with a few people. “Opera? You’ve already got a potential reputation for being elitist said the non-opera goers. How can you possibly choose opera? In search of more positive feedback, I then ask my friends who are opera buffs: Did they like it? “Not bad” They replied, “but it’s a really strange choice. After all it’s only an operetta. They sniffed over the edge of their opera glasses.
I tried a few other songs, but when I got to the one we selected, I knew it was right. True, we had to actually pay for copyright which was galling, given that it was being used to raise the profile of Parkinson’s and has no commercial application whatsoever. Nonetheless, the lyrics allowed themselves to be rewritten easily. And after another sleepless night or two, we were there.
Paul and Mark leapt on board with gusto. Rory and the judge were more circumspect. Jeremy – I know this will surprise you– was in deep opposition to the whole idea, particularly when we suggested to him that he might do his bit on some rollerblades for the opening sequence…
And then there was the question of the money and how we were going to shoot it. Our original idea of simply putting it on a smart phone was not going to work. Then Paul suggested Geoff Posner, an old friend of his who he had worked with extensively in the comedy world. Geoff is a legend in the industry and the moment he said yes was the moment that Rory signed up. The acquiescence of the judge was not quite as easy. However, after written affidavits that he would not have to dance or dress in sequins, he was in. At the last minute Jeremy also recorded the rather witty intro, the brainchild of Gaynor, (not Gloria herself,) but the Parky friend mentioned earlier.
Recording took two days, which we were told was unusually fast for something of this nature. The first day was recording the sound and well known music duo Morgan Pochin (Parky and super talented music industry guru James Morgan and his lovely mezzo soprano non-Parky wife Juliette) gave up a full day to help. Their gorgeous house and recording studio didn’t know what had hit it. It was overrun with tone deaf hunched Parkies exhibiting most of the forty-plus symptoms that we were about to sing about. In the end nothing got broken and no animals were harmed. The two of them were incredible, not least in keeping straight faces while we collectively massacred the notes.
The second day of filming involved taking over a village hall masquerading as a gym (the judge, impervious to accusations of elitism, was very keen on all our filming take place with his personal trainer at the highly prestigious Royal Courts of Justice private gym in central London. That suggestion got kiboshed pretty quickly. Geoff had warned us that much of the day would be spent repeating the same five sentences in different bits of the venue and at different speeds. Up to this point we had also wanted some neurologists involved but having heard this we thought that they may not find the best use of their time.
The issue here was that we had to have learned the words in order to mouth them. As you probably know PD wires out short term memories. Nobody could remember anything and hence mangled lines mixed with long silences at the wrong time and… if you watch the video carefully and we hope you do, you will notice that we are all lip syncing different words in entirely different ways. I’m not sure that Geoff has had a day like that before or since!
I have to say that even Geoff’s status with his God-like status could not pull it off without help from the last number of colleagues . Everyone who could, did it for free, including Jenny our lovely BBC make-up artist, Thanks so much to you all. We are deeply grateful.
I can’t speak for the others, but for me in the pauses between filming, watching the clouds scud across the sky from beneath the canopy of a huge tree next to a picturesque village hall kind of summed up the whole of the podcast: new, unexpected experiences, new unexpected friends and new unexpected faith in humanity.
Of course not everyone could work for free – eg those starting out on their careers did not have the luxury of not being paid. After a frantic search for donors, it turned out that the help we needed was closer to home: first the three main Parkinson’s charities (Cure Parkinson’s, Parkinson’s UK and Spotlight YOPD) came to our rescue on a white charger when it looked as the whole project would ultimately have to be shelved. The other white charger was ridden by our wonderful producer Hattie who notched up late nights and weekends without a murmur. In the other corner were the owners of the music (also very tiny and unable to accept giving away their labours for nothing) who said we had to pay a licence fee. Poor Universal Music. Of course we had to pay.
And now the baby is here, we hand it over to you. Please do like and share with as many people as you can. We need to spread the word about this Cinderella illness, we need to get signatures to get the issued debated in Parliament and we need to rid ourselves of this pestilent Parkinson’s.
Thank you!
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