Monday, 15 December 2014

Voices From The Street.

So, I spent some time wondering how best to deal with what has happened this week. What is the best thing to do? How should I react? Should I write a letter? Should I throw all my toys out of the pram? Should I scream and scream and scream until I get what I want (it didn't work for the Gin Advent Calendar!)?

What am I talking about? Well, a little while ago I wrote to the Lancet after reading yet another defence of John Ashton. My letter was abridged (with consultation) and then published. "YAY" we all said, "haven't we done well". Well, no, it seems.

This week we saw a response to my letter. I admit to being surprised, especially as to the people that chose to respond. Profs Martin McKee, Simon Chapman, Stanton Glantz and Mike Daube. I was even more surprised at the content of their response.

But first, I feel it is important I set out my conflicts of interest, being as these seem to be under question for all of us, all of the time.


My name is Lorien Faenor (stfu) Jollye. I am 36 years old, being born on the 30th day of the 6th month in the year 1978.

That's me *waves*

Between Easter and the end of October I am a waitress in a restaurant in a North Cornwall fishing village. The rest of the year I am just skint. All the time, I am a mother of three boys aged 13, 7 and 5. I have a (vaping, ex-smoker) husband, ancient and smelly border collie called Ash, and even more ancienter and smellier, one eyed cat called Raistlin.
Black cats really are crap in photos

To my knowledge, none of these are involved with the tobacco, e-cig or pharmaceutical industry. (Although I will say, my 7yo is seriously smart and sometimes I would not put anything past him!) I have been to various conferences, to which my travel and hotel (if needed) has been paid for by the organising body or by ECCA/NNA. None of this has been tobacco money. I have never benefited financially, in fact, these things ALWAYS cost me personally, because that gin on the sleeper train does not come for free (sadly) and neither does any food outside of the conference itself. There is a word for those expenses but I don't even know what it is, as I have never claimed it.

Incredibly, although that particular COI might be lengthy and unnecessary, the authors of the response letter were able to claim no conflicts whatsoever. Amazing.

I digress.

There are important points raised in this letter and I would like any reader of this to click this link, and familiarise yourself with it's content.

All done? Excellent.

So why am I not responding to the article via the Lancet? A few reasons actually, A) I would be restricted to 300 words and that is nigh on impossible, B) I don't actually think the editor of the Lancet would allow me the space again and C) this needs to come off of social media and journals and into the real world. So I am going to try and make that happen instead.

Dear Professors Mckee, Chapman, Glantz and Daube,

Thank you for taking time out of your busy schedules to respond to my letter in the Lancet. I am almost flattered that you felt moved enough to write a reply. There are a few things I would like to address. Firstly, it is important to understand that I refer only to 'a part' of public health and tobacco control. I have learnt, in the past two years, that it makes no sense to write people off from the start. Whatever it is that they start by saying, is not enough to say 'well that's THAT then, shan't bother with THEM anymore'. As such, there are a good many in your fields of expertise who we are comfortable talking with and they with us. Even more important to note, is that we do not always see eye to eye with these people, but we do respect the ability to think outside of the well constructed box they have been existing in for most of their working lives.

Social media. Oh it is a funny thing isn't it. I admit to being relatively new to it myself, having only got involved in it again because of my advocacy. It allows instant reactions and responses. Sometimes, those responses are raw and unedited. It has certainly allowed us to talk to one another freely and openly. You could say that many of us wear our hearts on our sleeves when it comes to Twitter. As a result of this, I understand that you have been the recipients of many unadulterated reactions to things you might have said or written. In relation to this, I would like to tell you about something that happened to me in my old job, working behind a bar.

I have worked behind bars or as a waitress since I was about 15, so I am well versed with how people can behave when they are drunk or in groups. I am quite hardened to it in fact. However, on one occasion a few years ago, I was behind the bar by myself, on a friday afternoon as the 'just finished work, not going home yet' brigade came in. Three delightful fellows were sat at the bar, quite merry from their consumption of lager, when they started to make crude comments at me. Now, I am used to this, it comes with the territory of bar work. I deal with it, I move on. Except this time it was aggressive and threatening. They were making demands of me and were leaning over the bar to grab at my breasts. I genuinely felt threatened. In the end, I walked out from the bar into the adjoining corridor beside the hotel reception area (leaving the bar unmanned) and very loudly stated that in no uncertain terms was I serving those 'f*cking C*nts' and that I'd had enough. (Little did I know that a well to-do, diminutive old lady in reception, heard every word of my tirade at the bar manager and very sweetly said 'no dear and you shouldn't have to!'). However, to this date, I have managed to make and maintain many relationships with men, without tarring and feathering them based on the behaviour of these morons.

Now, I have just written that out and realised it does not work as an analogy as THOSE 'men' were out of order, in any world. Although you might not like a lot of what is said to you on social media, these are just the raw reactions of human beings. People who genuinely believe in what they are talking about and are very frustrated. I cannot control how people react, nor what they say or do. Even what pictures they send to you, (I should say at this point I have NO idea about any 'noose' picture). I understand if you might object to an individual or two, but however uncomfortable it makes you, we are the public. It is as simple as that. If we are speaking to you, then it would probably be wise to listen. Certainly you would call me churlish if my extreme example above caused me to ignore all men, forever. You would be right too. I know it is hard to get over being insulted sometimes, but I would ask you to work on it, as there are dividends to be paid. Paid, being something none of the people who are tweeting you are.

Indeed there was an event held on the Tobacco Endgame at the London School of Hygiene and Tropical Medicine, hosted by one of yourselves. Indeed I did not attend, largely as it was not about e-cigs, after all, I am not fighting the tobacco companies (frankly I couldn't care less about them other than feel contempt for their behaviour in trying to restrict the market to the e-cigs they sell). However, three friends of mine did. I am confused by the accusations of  nasty tweets from the event, and I would point you to this blog which, handily, has the tweets from the two people whose phones were working. Now, I am not a member of Public Health or Tobacco control, but my assumption would be that you have rather thicker skins than I do, what with having more criticisms leveled at you than I am ever likely to experience. I'm not wholly sure that these tweets fit in with what you imply. Maybe there are some I missed? I shall say though, that anyone involved in advocacy of any description, is reasonable enough to know that hijacking a talk that ISN'T about their subject matter would be a little childish, silly and impolite. However, the E-cigarette summit has been held for the past two years at the Royal Society and I admit to having seen none of you there. Nor did I see you at the Global Forum on Nicotine in Warsaw. For that matter, I don't think you were at UKNSCC in June. I did see one of your number at the PHE e-cig event earlier in the year, but the attendee seemed distracted by attacking Anne McNeill than interacting with us. An informative day nonetheless.

More and more there are vapers attending many PH and TC events and we would dearly like to see you there, your presence has been sadly lacking until now. In fact, there will be a second Global Forum on Nicotine in June next year, it would be a great opportunity to engage with both sides of the argument and have a natter with those whose opinions differ from yours. As many others in PH and TC (even politics) will tell you, there is nothing to fear and everything to gain. Most importantly, we do not bite :)

If I may be so bold, there are many of us who would like to sit with you in a given place and talk this situation through. I know this offer has been made before, but I understand that it might have been lost in all the other requests from other groups involved in harm reduction. So let me take a moment to ask you again; Would you make time to sit with any of us and chew over the cud before it loses its flavour and this opportunity is lost to all?

My penultimate point is that I must thank you for your recognition of the impact of our 'campaign', though I fear it is far less organised than you think it is. Unfortunately, I think the situation for the average smoker is now less clear than it has ever been. Indeed, it would appear that many now perceive vaping to be as, if not more (10x more!) dangerous than smoking. I feel sure that if nothing else, we can agree that this is a tragedy for smokers and their friends and family, if people who were interested in switching have now decided against it and are continuing to smoke instead. Please forgive me for assuming on your part, but I am certain that this is not something you are happy to see happening. I understand that the health of the public is paramount to you, and the chance for so many to improve it with such a small change can only be something you have dreamed of your entire professional lives.

Finally, yes the debate has moved on and this is something that should be celebrated. It is widely acknowledged that the current measures are not reaching smokers as frankly, they are not interested. How wonderful indeed then, that something has appeared that smokers ARE interested in and is not costing the state a single penny. How best to proceed? Who knows, but certainly engaging with those who understand, as smokers, what this means would be the very best place to start.

Thank you again for your reply, and I look forward to hearing from you with details on how this discussion can be continued in a constructive and adult manner.

Lorien Jollye.

Thus ends my response, I shall email a link directly  to Messrs McKee, Chapman, Glantz and Daube, thanks to their emails being available here.

Now, let's wait and see what happens next.

UPDATE 23/12/14: 

You will all be surprised to learn I have heard nothing & no invitation to meet has been forthcoming. 

UPDATE 1/1/15

Starting as I assume they will continue throughout 2015, there has been no reply. 

Tuesday, 2 December 2014

The Trouble With Bubbles

Something has been bugging me for a while and I have been meaning to sit and write about it for as long. What do I want from all of this? What do I hope the outcome will be? What do I hope to achieve?

I say "I" in those questions because I can only speak for myself with absolute certainty, but I know there are others who think the same way. I hope this blog makes you ask yourself the same question. It is amazing how you assume you know your own answers, but sometimes it is worth thinking things through just to make sure. It also helps to keep you on track with your message and the things you say. All shall become clear...

Firstly, my questions do not have anything to do with "what legislation do we want?" or "what do we want vaping to look like in  5 years?", although they are very valid questions, it is not what this is about. I wanted to know what effect I want our movement to have on society, namely Public Health and Tobacco Control, and it's attitude towards smokers.Whether you like it or not, or even realise it, what we are trying to do has far wider implications than just whether or not we can vape in the pub. It is more than whether we are taxed for our habit or whether teens are taking up e-cigs in huge numbers (one day I WILL get round to writing my thoughts on teens and e-cigs!).

Put all those things aside for a second and think of it like this - if we get PH and TC to acknowledge e-cigs and vaping, what does this mean?

It is no secret that I have a big issue with the way smokers are treated by these two groups at the moment. Not all of it, but certainly a large part of it. I resent and reject the bullying and the attacks. I despise the social engineering that has turned the non-smoker and ex-smoker against those that still smoke. I hate it with every fibre of my being. However, does that mean I wish to see the abolition of tax funded support for smokers who want guidance and advice? No, actually it doesn't. I know this might come as a surprise to some, so let me explain why.

Many people reading this blog will be the smokers or vapers that did not really want help in a structured sense. Many of you will have tried it and ultimately "failed", for many reasons. Overall, only about 8% of smokers actually attend cessation services at all. Do I think they are value for money when our NHS is about to crumble into the ocean? No I do not. HOWEVER, smokers have paid more than enough into the system to have any damn service they want, fully funded. To my mind, if even only a tiny fraction of smokers WANT the support an SSS offers, then they should be able to have it. So do I LIKE the SSS? No. No I do not. Why? Ha, let's have a looksie shall we?

Bit of playground bully banter...

Just in case you hadn't heard this stuff, let us ram it down your throat some more.

Oh you grim, dirty smokers, we can see you with your discoloured digits. The badge of shame you must carry.

Oh look how ugly you all are. You stink too! Did we mention that already?

Well just in case we didn't. You stink.

And you're ugly.

Ok ok, so maybe I should have trawled other SSS twitter accounts to balance it out a bit, but a) why bother when these guys give so freely with their nastiness and b) I couldn't be bothered, we all know there are many that work in the same way. Oh oh oh wait, I forgot my personal favourite, sadly deleted, but preserved for all posterity by the wonder that is "screenshot",

I have nothing.
Before we move on, I follow a few of these accounts on twitter and there ARE exceptions, services that are (largely) respectful and non threatening. They avoid using the Q word and never resort to the above tactics. They come across as welcoming and inclusive. What I imagine the word "support" to mean. "We'd like to help" rather than "You are such a hopeless, foul mess that you NEED our help". Had I not spent time with and learned from Louise Ross, put aside some of my own prejudices and actually listened, I would not have noticed the difference. It has definitely forced me to look at the potential of SSS in a new light. Make no mistake though, at the moment, most of them are miserable bloody failures and a lot of these people have no idea what they have been a part of or what is happening to smokers on the ground.

Anyway, these examples got me thinking, would we tolerate this - 

No we wouldn't, of course we wouldn't. Neither would we if these were drug support services. Please don't think for a second that I think smoking, alcoholism or drug addiction are comparable, I don't, but these services put them in the same bracket from a PH point of view. So, I asked Twitter for some drug and alcohol accounts (UK based) that do offer these services so I could compare. I don't really want to add lots of pictures here because somehow it feels disrespectful, but none of them use the same tactics as most of the smoking cessation ones do. Why? I am guessing, that at some point, people realised that bullying is NOT how you reach out to your target audience. It is not how you create a safe environment for those who choose to come to you. It is NOT how you behave if you are building a service to genuinely help people, not use it as an excuse to spread more hate and distaste throughout the public. 

Winnie the Pooh and Piglet did not spend years teaching the friends and family of the Heffalump to despise him, till eventually his own children dragged him to the hole WtP and P had dug and pushed him in kicking and screaming because they decided he wanted honey! No, a hole was dug, the honey placed at the bottom and if the Heffalump wanted it, he could go in and get it; if not, he carried on his merry way to find honey in his own sweet time. If he wanted it at all.

Now, I know there are going to be quite a few who have got to this point and are positively bellowing at the screen "WE KNOW THIS!! We have been saying it for YEARS!!". Yes, yes I know. Just let me finish...

So where do e-cigs fit into all this? Well, they have proved one thing. One simple thing. The fact that so many are using them, without any pressure, without any bullying proves that bullying does not work. Again, yes, we know this, you can stop swearing at the screen now!

Until e-cigs really kicked off, Tobacco Control and Public Health lived in a little bubble. No one really questioned them, no one held them accountable. There wasn't a product that would force the situation like this has. Smokers did not have a genuine choice. You smoked, or you were medicated. If you tried to Q and didn't succeed, you were a failure. You would have to tell all your friends and family that you were a miserable bloody failure, again. Shamefaced and humiliated, full of promises of "next time". Never really being allowed to say "You know what, I like this thank you very much". There wasn't anything to replace it with. The Now is a very different place.

If TC and PH accept e-cigarettes, if SSS country-wide are allowed to sell the concept of vaping to smokers that walk through their doors, if the stigma is removed from nicotine and the stupid comparisons to drug addicts, what does that mean? It means that everything has to change. Everything. You cannot embrace e-cigs and harm reduction for smokers whilst continuing on the same path. We are going to get to a point where they are going to have to make it clear. Are they guided by the health of smokers? Or are they guided by pure, unadulterated, all consuming loathing of the tobacco industry? As more and more data comes in and we can compare countries that have and have not banned or restricted vaping, their position gets more and more difficult.

Am I being overly optimistic? Possibly. But as we watch bans and hysteria across the planet, in the UK we are doing alright! Glantz called us an experiment, and it is one of the few things he has been right about.

So here is the thing, the trouble with bubbles is that, eventually, they burst. It is my sincere hope that it is not a pin, but an e-cig that bursts this one. What a wonderful side effect to come from this battle we are fighting.