Jon Stamford

As anyone who’s ever reflected upon my sporting achievements will testify, they are few and far between. No glittering half centuries, few catches, no bowling at all. In consequence my respect for those who have made substantial achievements is unbounded. The club – and I’m talking about Bells Yew Green Cricket Club of course – has been built, since 1947 upon the achievements of individuals. There have been glittering innings, spells of bowling and stunning catches seen over the years at this quirky little dome of a cricket pitch, forged through the physical efforts and financial commitments of many men.

I could pay tribute to many here. That’s the thing with achievement. It never stops. But I want to pay tribute to one individual. This is the story of a bowler. A bowler who was not six foot three tall, with terrifying pace and steepling bounce. A bowler who had none of those physical advantages. Short, and not blessed with a skidding action particularly. For many these would be insuperable disadvantages.

And let’s be honest, he has often been the subject of gentle teasing, making fun of his diminutive height. He has always been the first to laugh, often the first to joke.

But for him, these were less disadvantages than challenges. For many seasons now, he has demonstrated the value of sheer persistence coupled with a nagging line on off stump. A simple distillation of the “you miss, I hit” approach. He has played in every XI the club has put out, representing BYG at the highest levels.

And last week he became only the second player in the club’s history to take 1000 wickets. A massive achievement. Not achieved overnight, not without setbacks. But achieved by sheer dogged persistence, a nagging bowling line and an absolute and overwhelming commitment to the sport he loves. As for his ‘slower ball’, perhaps we can gloss over that.

Jockey, I raise a glass to you! Respect, my friend.

With all this Jubilee malarkey going on, you could be forgiven for missing the most anticipated sporting event of the century. I’m talking of course about the mighty clash in the pool room of the Brecknock Arms between the reigning champ Richard “A Bridge Too” Farr (about 80) and the young pretender Jon “No Chance” Stamford (more than 60).

To say that these were two athletes at the very peak of their form is of course to undermine the concept of athlete and indeed form. Nevertheless, with a joint experience at the pool table of more than a century, expectations were high. This was a match awaited for more than 50 years.

As the time for the fixture drew close, the opponents stared into each other’s eyes, like gunfighters looking for signs of weakness – that fatal twitch or blink of an eye. Like Clint Eastwood and Lee Van Cleef, the two gunfighters sized each other up. As Stamford nervously sipped his half of Coronation Ale, Farr, the champ gave nothing away. Slight shake perhaps as he lifted the dregs of his tomato juice to his lips. You could cut the tension with a butter knife.

In normal circumstances, a gigantic partisan crowd would assemble, with klaxons, rattles, smoke grenades and so on, all those symbols of partisanshipship. With the failure of BT sport and Sky to reach agreement on broadcast fees, the match was in the end fought out under closed conditions with occasional visits and advice from Monsieur Will, a local Michelin starred chef.

There was controversy from the first. Neither contestant had any coins. Despite the huge depth of talent and experience on offer, neither combatant had actually entertained the idea that they might have to actually pay for this. For one fleeting moment the fixture hung in the balance. Fortunately a sponsorship deal was quickly assembled when Will, after briefly rummaging around for loose change stumbled across some pound coins in a plastic bag. Relief all round, the fixture would go ahead.

Friendship would be cast aside in the war that was to follow. This was no longer a brief interlude between lunch and tea time. This was, in sporting terms, The Somme, Gettysburg, Agincourt and Waterloo all rolled into one. Two hours and an unbelievable three frames later, the warriors emerged, blinking into the light.

these were games that, in a very real sense, had redefined the way the game is played. So many foul strokes, open pockets, miscues and complete misses were registered that neither player came to the table with only a single shot on offer. Time after time, the competitors would set up a part with their first shot only to then throwaway the advantage with a baize ripping miscue.

The afternoon wore on. And on. And on. Whilst most of the spectators were praying for rain, the pool itself had collapsed into trench warfare, with long wearying gaps between legal shots. It was like the siege of Vicksburg all over again. Night began to fall. Or at least it felt like that. Eventually, a result was declared. The champion returned to the pub for a celebratory tomato juice. The challenger licked his wounds with a small Diet Coke.

“You took how long to play the frame?” said Lady Eleanor, the Aphrodite of the alehouse, making no effort to hide her incredulity. I prefer to think of it as a tactical war of attrition. I suspect I am in a minority here.

Of course such pinnacles of sporting achievement are never allowed to rest. As Mohammed Ali found out, there is always one more Thriller in Manila or Rumble in the Jungle.

But, in our case, it’s probably indigestion.

Those of you who know me well will know that it speaks volumes for me just to be able to say “I played cricket last Saturday”. But what a game! It had everything. Drama, flair and courage. This was my comeback game after maybe six years or something like that. And it was all made possible by the neurosurgery and implantation of electrodes deep in my brain in November. Not all of you follow my Parkinson’s ‘exploits’ but my Parky pals will know how much it meant to me.

Cricket is a metaphor for life. A metaphor for the twists and turns of life, its myriad subtleties and nuances. There is a rugged poetry about the game of cricket, its ebb and flow, it’s embodiment of courage, loneliness, concentration and panache. As any cricketer will gladly quote to you “cricket is a team game played by individuals”. Games are won and lost on that elusive combination of individual moments. That moment when a huge strike lands just over the boundary rope when it could, just as easily, have fallen into the waiting fielder’s hands, thereby annulling what went on to be a huge half-century. This is cricket.

But yesterday’s game however was different. Brooksy, the skipper, had let it be known, via the club’s Facebook page, that this was my ‘comeback’ game. That in itself was amazing and I was overwhelmed by the kind wishes from so many of the best cricketers I know. Some simply wished me the best of luck. Others reminisced about games we had played together in the past. We had legends visit us at Cousley Wood – Mick ‘Mitch’ Mitchell, lethal fast bowler from years gone by, Steve Dunkerley, my first captain all those years back and still one of the best cricketers I’ve met, Fudgie Maynard, mother of Charlie, whom I played alongside and saw develop into a very good whippy fast bowler. Charlie not Fudgie! And so on.

It was that kind of day. And if Heathfield Park cricket club had played its part correctly would have been an epic victory by a handful of runs. But fairytales rarely happen and the cold dark statistics tell the tale. We lost by one wicket. After several hours of ebb and flow, cut and thrust, something and something else, they won by one wicket.

To be honest that’s the way you want it, to go down to the wire with everything still to play for. The formula is simple nowadays – win or lose. No subtle draws, battled out over hours of grim self-denial. Only swashbuckling wins and desperate defeats.

Cricket is a game full of maybes. Maybe we could have got off to a better start. Maybe we could have held more catches. Maybe, just maybe. And when you come to talk about a game, it’s turning those maybes into realities that define the sport.

And I had my chance later on, as an individual, to win the game for my team. A sharp low chance diving to my right. Got a hand to it but couldn’t hold on. Maybe I could have seen the chance marginally sooner against the sunlight. Maybe I could have extended my fingers those few inches to take the catch. But I didn’t. And a few overs later, the game was lost.

If you had asked me before the game whether I would settle for one moment, one chance of glory, of course I would. And that’s what I got. That one chance. In the fairytale version, the way it was scripted, I would have held the catch, been a hero and had more beer bought for me than I could possibly drink. Another day.

Cricket is truly a metaphor for life. And you will never hear me complain. To be able to play club cricket, at however low a level, has been one of the great pleasures of my adult life. And the friends I have made along the way will, one day I hope, become the cornerstones of a cricketing novel.

Well, maybe.

When I was around three years old, perhaps four, we lived in flat in Denham. My father, my mother and me. My father was a doctor and my mother previously a nurse. Each morning we would finish our breakfast, my father would give my mother apeck on the cheek and head off to surgery. Mum and I would wave him goodbye. Once out of sight, my mother would start on her chores. I on the other hand, waited until I had seen Mr Potts, the bank manager leave for work. He would wave to me and I would, in return, wave back.

On one occasion, meeting in the street, Mr Potts had said to my mother how friendly and cheerful a boy she had. This made me laugh. I had no particular interest in Mr Potts as a human being. A rather dull man if truth be told, with a Bobby Charlton combover, tortoiseshell glasses and weedy moustache, lugging his briefcase into his car.

Not just any car though. Despite his Walter Mitty, digestive biscuit kind of persona, Mr Potts drove a Jag. No car has ever been less well matched to its owner. This was the 1960s. Jags were driven by villains. Ronnie and Reggie drove Mark 10 Jags. Buster Edwards drove a Mark 2. No self-respecting villain would drive anything else. I suppose you could argue that both Buster Edwards and Mr Potts were, in their own different ways, interested in the contents of banks. But these were not ideological similarities in any way.

Despite Mr Potts, Jaguars were and always have been aspirational cars. Ask any young boy of that age what car they most wanted and the answer was always a Jaguar. Not a BMW. Not a Mercedes even. No, every boy wanted a Jag. And if your dad had a Jag you were king of the playground at school. “My daddy’s car is a Jag-you-are.”

Those boys grew up, as little boys do, compromising with Fords, Vauxhalls, Seats, Volkswagens and so on. Cars that went from A to B. Functional cars. Practical cars. With drivers that bored with their talk of fuel economy, luggage space and cheap leatherette seats. Cars that, bit by bit, squeezed the life force out of their owners.

And then there were Jags. Driven, Mr Potts excepting, by the kind of people your parents told you not to talk to. The kind of people who wore sunglasses (this was the 1960s) with names like Ray Ban, Aviator and Lacoste. Sunglasses that spoke of the Monte Carlo and the Bay of Naples rather than Timothy White’s or Boots. Perhaps not gangsters, but definitely edgy. The kind of people who made me cling to my mother’s legs in their presence. Alpha males.

I was no different. I wanted a Jag for as long as I could remember. And I too compromised. What should have been transports of delight were little more than emblems of servitude. My first car was a Ford Fiesta. I’ve had Golfs, Sierras, Minis and so on. Some fun, some less. All falling short of my motoring ideal, my Nirvana. That never changed. As months became years, years became decades, I began to recognise that gnawing lack of motoring fulfilment for what it was. I needed a Jag. No matter how I thought the problem through, rationalised reasons against it, or examined my fragile finances, I had to have a Jag.

In 2006, I was diagnosed with Parkinson’s and, facing the very real possibility that my motoring days might end abruptly three years later, I decided it was Jag time. Others in the family concluded differently. I had intended to buy one upon retirement but since that was a good decade or more in the future, I had to agree that, even through my rose tinted spectacles, it was unlikely I would still be driving then.

Thought through, this had a very salutary effect of bringing the decision forward. If I was going to ever have a Jag it needed to be now. That is at least one of the more attractive aspects of Parkinson’s – it encourages swift and decisive decision-making. Others might call it impulsive. Probably.

Of course, a Jaguar is, to any true enthusiast,an old car. As James May of Top Gear famously asked of the newest, lengthened teardrop XJ design “but is it a Jaaaaag?” In these days of androgynous, angular design, Jaguars look like BMWs which in turn look like Mercedes. Such is the investment in Jaguar that it must now compete for the fleet market with 3, 5 and 7 series BMWs. Individuality has been sacrificed on the altar of expediency. Now you can have your BMW, that middle management symbol of servitude with either a BMW or Jaguar badge, such is now the similarity between the models.

For me, Jaguar as a saloon car marque ceased to exist around 2010 when the XF and new body XJ were released. Wonderful cars themselves but ones that did not answer positively to James May’s question. These were new Jags for a new generation. In due course, I’m sure, owners will look back on these fondly.

But, in many ways the last true Jag was probably the most retrospective looking of all – the S type, with its many stylistic nods back to the old S type and Mark 2 cars. And when I finally got air-traffic control clearance so to speak and was able to buy one, it was this Jag I went for.

A marriage made in heaven? Hardly. Within six months of ownership it had some £5000 worth of repairs and replacements done. All I have to say covered by the warranty. Rattling catalysts, squeaky steering, and the almost inevitable gearbox problems that plague these cards. And before you see this as pathognomonic of the British car industry of that time let me just say that the gearbox is made in Germany. The only German part on the car I believe! And the same one used in many BMWs of that time. It wouldn’t be a Jaguar if it didn’t breakdown! If you want soulless 100% reliability, buy a BMW. A laptop on wheels.
If you want to feel part of a living thing, breathing, pulsing and throbbing, then you know where to go.

The Jaguar S type. Love at first sight.

I’ve always been one of those nervy writers. As the saying goes “you’re only as good as your last piece (of writing)”. Something like that anyway. These kind of anxieties affect us all. Even the greats – Hemingway, Faulkner, Twain and that’s just the Americans. If your last piece happens to be “The Old Man and the Sea” you’re home and dry. Well when I say home and dry I suppose what I really mean is “soaked to the skin and reeking of decaying tuna fish. On the other hand I’m sure the Nobel prize for literature probably softened that minor personal inconvenience. I’d be happy to dig into the tuna mayo sarnies if I thought this act would be a surefire route to literature superstardom.

The basic truth however is that I am not wrestling with giants, not tangling with titans nor even scrapping with something beginning with S. I’ll get back to that. Or probably won’t. Who cares.

I like writing. So I, by inference, dislike those periods in which the words do not somehow percolate to the surface. And the better the piece, the longer the subsequent interval and the greater the likelihood of the resultant piece of writing being stymied by even so moderate a pause.

“I feel a bit like Rocky these days, climbing into the ring for one last hurrah. The tools, if I’m honest, are dwindling, any power of writing I possess gradually fading in intensity. I forget people’s names, I forget that I have forgotten people’s names even.

Let me give you an example. Being Saturday I went up to the cricket ground to watch a little sport and to catch up on my cricket friends and, once more, to subtly mingle my brief batting excursions with the more far-reaching batting travails of, well, pretty much anybody else. That’s the great thing about cricket and I’ll come back to it later – there are always stories.

I watched about half the match, mostly our team batting. Then, a brief coke in the pub and off to do my weekly shop. Then back to the pub around 7 to see how the other game (away) had gone. I asked one lad (we will call him T) how the other match had gone. He seemed bewildered. “I don’t know”. Then he alerted me that, not only was he not playing in the other game but that I had, but an hour or so earlier, witnessed his innings as opener. I think I made some attempt at humour along the lines of the November neurosurgery evidently had removed all but a thin veneer of grey matter and that the electrodes were failing in their duty.

To be honest it was embarrassing. For me and for T. And it’s happening more and more (the memory lapses that is, not the feeble cover-up jokes).

The column this month was meant to introduce what I am hoping will be a regular blog throughout the summer, detailing from the sidelines the exploits of our illustrious teams in their 75th anniversary season.

“What name will you use?” asked Jay. “My own” I said. “Why?” It took a moment or so to realise he was talking about the name for the column rather than the complex and needless pseudonym I might have been considering. Cyborgius Gruntfuttock perhaps. Or Yorick C. Manatee. A raised eyebrow from Jacob made it clear I had better stop.

After a few more brief excursions into combinations ofnames, it became apparent that he was talking about the name of the report.

I said to him, it needs to combine a notion of gossip and suchlike. I told him the name and such justification. I tried to explain to him – combination of cricket (actually catching a ball) and tittle tattle news.

“Yes dad, I get it”. Rolling exasperated eyes from Jacob.

“Caught at gully”. Did you see what I did there?

It’s that time of year once again when we, self christened Parkinson’s advocates, write a little something, toss off a bagatelle, to inspire and enthuse the readers. We pick our best brave face, drug ourselves up to the gunwales and pick up our banners and tins, ready to ‘raise awareness’. To this day I have not heard a convincing definition of what that is.

This year seems different. This year the world seems to have taken a darker turn. Fires burn in the Amazon, in the Rockies and in the Blue Mountains. Toxic smoke obscures the horizon. Polar bears swim desperately for land in the rising Arctic waters. From being a tender lover, gently lulling us to sleep in her arms, the weather is now angry, disdainful, tossing us like a wounded mouse between the cats paws. And everywhere there are evil people happy to exploit others, send overloaded boats across the channel in search of a new life in Britain only to drown within sight of land.

Elsewhere landscapes, sweeping vistas, or bucolic village scenes in the Ukraine are transformed into the charred backdrop of our nightmares. The acrid scent of burning human flesh among the unsanitary detritus of human misery. Ukrainian children needing chemotherapy that they will never receive in the hospital, now burnt to the ground, their deaths are certain as night follows day. What kind of person, what kind of bestiality allows these crimes to take place. Atrocity upon atrocity. Man debasing his own humanity.

On the radio, through the Internet, the television, jerky anxious pictures of annihilation. As though burnt into my retina,I can’t even close my eyes to make it go away. I wake in the night to the sound of screaming. My own screaming. Terrified and alone.

And against that how can I seriously be expected to talk about Parkinson’s?

Of course I can’t. And so I won’t.

My message to our great Parkinson’s family this year? Simple. Save all the money you would have given and give it to more worthy causes – and at the moment there are many. Give it for chemotherapy in displaced Ukrainian children. Give it to prevent Amazon deforestation. Adopt a polar bear. Anything. Anything worthy. Just do what you can to redress the balance. Apologise to Gaia. Pray to any gods you may have . But act. Above all act.

Oh for goodness sake. Start here first:

As a person w/Parkinson I’m probably expected to b grateful 4 all efforts 2 raise awareness. I’m not. IMO launching a new symbol seems like a desperate attempt 2 b seen as doing smtg useful instead of doing the work actually needed https://t.co/yxnZRzuytz

— Sara Riggare, PhD (@SaraRiggare) April 9, 2022

Branding the alien

I think they used to call it tagging – one graffiti artist (and I use artist in the loosest possible interpretation of the word) leaving his calling card anywhere and everywhere. I think it originated as a way of marking one gang’s turf from another. Simple symbols, colours and so on until the surface was covered with a cacophony of jostling colours. Another symbol to recognise, another gang to avoid.

So it is with the Parkinson’s community. From somewhere, we have another (yes, hard to believe I know) symbol, new colours to rally behind. This time it’s a orange lightning flash or something like it. It’s hard to imagine a less appropriate symbol especially at this time. Lightning flashes, to me and as many people as I have asked, suggest things like the SS lapel motifs. Throw in a skull or two and we might as well use the full totenkopf emblem.

Even taking out or brushing to one side the rather sinister imagery in terms of war (don’t forget the Russians the using something similar as well), the lightning flash is hardly an appropriate symbol for a condition of such slow pace. For a stroke, or similar catastrophic neurological event, it kind of makes sense. But for Parkinson’s? Really?

At a time when we as a community should be thinking about practicalities this kind of nonsense is just a distraction. I gather that people are invited to modify the logo to suit their own needs. You can be sure that I’m going to do exactly that.

Mother’s Day, or, being pedantic as I so often am, Mothering Sunday, is a bittersweet day for me. I smile at the many photographs on Facebook and elsewhere of celebrations, of mothers beaming in the many millions of photographs taken today.

Bittersweet, as I said. My mother died in 2009 and, fair to say, I think of her each day but never more than on her birthday and on Mothering Sunday. Alas I can not celebrate either the mother of my children with any credibility any more. Not through any failing on her part, but mine. Enough said. Leave it there.

Don’t misunderstand me please. I do not even for one second begrudge the many mothers their all too brief public appreciation. The one day in the year where they perhaps get breakfast in bed, a couple of bits of buttered toast and an instant coffee.

We males are pathetic animals really when it comes to these things. If you, mothers, wives and lovers, were expecting a full English or perhaps warmed pains chocolat or brioche with a grand creme or cappucino, brace yourselves for something of a disappointment. No chance whatsoever. And there is a better than evens chance that we will fail to grasp the core fact that the washing up is considered to be part of the process of breakfast in bed. Do not simply leave the dirty crockery on the side. Remember her surprise sigh, midway through the morning which she wouldn’t explain? That was this. And don’t delude yourself that it is of no consequence. Women remember these things. Forever!

On this one day of the year we, the males of the species, have to perform those tasks the female performs everyday without making a big deal of it. Do your best, at least do your best. But be aware you will still fall short.

Flowers? Sure, why not. Chocolates? Dangerous. If she sees herself as overweight, you become part of that conspiracy theory. If she is skinny as a rake, she will point out to you the very absurdity of buying the chocolates.

I don’t k now why I’m dishing out advice. It’s not as though I got it right. I can remember to this day the one occasion I failed to send my mother a card. To say that the response was cool would be akin to calling the second global ice age a bit of a cold snap. It was more glacial than there are words. And, like Kennedys death, I can remember exactly where I was standing, who I was with, the birds in the trees. All of these things are indelibly etched in my mind. There are no apologies adequate to convey the full magnitude of my despair. My mother even seemed to make light of it. “These things happen” she said in the kind of tone that made me realise that these things did not happen and that they were never ever again to happen or further transgressions would be greeted at least by disinheritance.

Even so many decades later, I’m sweating as I write this. My mother was one of the most delicate, kind people I could imagine. So to see her, on this one day of the year turned, by my own failings, into a firebreathing gorgon still rankles even now.

And we are now, sadly, beyond the point where I can apologise.

Well, not six months exactly. More like five months and 22 days but let’s not split hairs.. Let’s get to the meat in the sandwich. What has changed since my last report? On the whole not very much.. Although I am delighted (honestly) with the results, there is still no doubt to my mind that better still can be achieved. In part this is due to the stimulating location and range of the Boston Scientific DBS system this I received at the beginning of November last year.

Okay so let’s break down the results a little bit. There is no doubt the biggest pluses are attributable to a substantial reduction in tremor. I can now read words on a page where previously I struggled with words at all. The surtitles of the opera house are now once more visible in all their sacrificial and, in the case of opera, often comical, appearance. I can hold a book steady enough to read and not be surprised by the appearance of new and previously unknown characters towards the end. I can now follow the plot. I can hold a camera with sure and steady hand, and the eye of a marksman. I said to my neurologist, a good friend and exceptional scientist, in October, that a steady hand alone would justify the surgery in my mind, that I would settle for that alone.

My right hand has remained steady since. The left hand has a slight tremor and that has perhaps increased a little over the last six months but not enough to detract from my rock steady right. This tiny deterioration may simply be progression of the primary neurodegeneration itself (it is a neurodegenerative illness – remember?) quietly picking off cells in the background like a sniper.

These are the positives. And they are very positive.

But there are negatives and it would be wrong of me to infer that all in the garden is rosy. My motor symptoms have not really improved at all. I still struggle with my walking, bent over much of the time like a question mark when I wanted to be an exclamation mark. This has been surprising enough that, were it not for my rocksteady right hand, I would doubt whether the procedure had done anything. That and the persistent inability to reduce my drug load has been surprising. I had expected greater motor improvement and lower drug levels. These observations will form the basis of my next consultation meeting.

It is important to keep a level head with Parkinson’s and with DBS in particular. People expect miracles and, if they enter the process (and it is a process) with inappropriately high expectations, they will be disappointed. DBS is not a cure. DBS is another tool in the neurosurgical armament, another choice on offer. And DBS as we know it today is a world removed from the DBS of two decades ago. Those almost blundering efforts were in every sense a stab in the dark. Modern DBS, coupled with precise neuroimaging is less of a wing and prayer. The surgeons themselves are artists not artisans. Perimillenial DBS is to its modern counterpart as Cro-Magnon cave paintings are to the Sistine chapel roof. The science has changed that much.

My neurologist told me that it would be an iterative process of changes in the stimulation parameters. We should not expect it to be perfect first time. And I have no problem with that. So, when I see my neurologist I shall update him on the successes of the DBS and we will sit down together to work on those motor symptoms.

Perhaps after I have handed over a bottle of Bollinger…

Over the years I have had Parkinson’s, I become progressively more enthused by and protective of patient interests within the field. It would be nice to say my commitment is equally applicable to all areas of patient treatment but a man can only do so much and so I focus exclusively on Parkinson’s.

Patient involvement, in pharmaceutical research and clinical trial design has become a necessity for clinical researchers. Put simply, if you don’t solicit patient involvement at as many stages of the research process as you can, you will be marked down by the funders. In some cases it will even preclude receiving funding. The same goes for drug companies, obliged by the licensing agencies to demonstrate credible bilateral patient engagement.

Drug developers need patients, not only as participants in clinical trials but also as participants in coproduction. In large part these initiatives have been driven, not by pharmaceutical companies eager to hear “the patient voice”, but by researchers recognising that their research will vanish down the Suwanee if they do not.

Obviously that’s a slightly dark and rather cynical position and I put it forward, in part, by way of playing devil’s advocate. I do not believe for one second that this is representative of the kind of board level decision-making within the pharmaceutical industry as a whole. There are a good many drug companies that do, deep down, have a belief in the value of fully integrated patient engagement at every stage of development. And when that is achieved in a non-tokenistic manner, the value to all parties is significantly enhanced.

So you receive invitations to be part of a board/discussion group et cetera. What do you do?

Well it’s important to know who is asking for your involvement. Do they use words like dopamine, receptors, on/off, dyskinesias, nonmotor symptoms and so on, delivered by earnest men and women anxious to know your thoughts?

Or are their sentences replete with words and phrases like leverage, optimising market share, identifying target markets, stakeholder segmentation, and managing consumer expectations, delivered by men in suits with rictus smiles?

The answer to these simple questions may help you to decide.

Personally I get tired of listening to this kind of managerial market drivel. If it’s your path, fine go do it. But it’s not my chosen role. Do I sound cynical? Maybe a little.

The role of patient advocates is a tricky one, walking a tightrope between marketing aspirations and pharmacological realities. It doesn’t matter one jot that the marketeers wants to position a drug in such and such a context, if you can see from the data that the side effects profile is unusually bad. The marketeers can bury their heads in the sand if they wish but the fact is that a drug removed from the market is much worse, publicity -wise, than one which never made it to the market. The latter suggests due diligence, the former smacks of incompetence.

Patient advocates rarely have and would, in all probability, not want that kind of personal responsibility. But they do nonetheless seek a voice in the process and it should be the honest opinion of those advocates and not modified to make it more palatable.

The best relationship between drug companies and patient advocates is one where a long-term relationship is created, constructed upon mutual respect and understanding. This is not achieved overnight. It takes time and trust. It is a mutual education. And above all, if you will forgive me one piece of managerial gobbledygook, it is a win-win situation.

That’s proper patient advocacy. You’re welcome.