Not Forgotten – the "forgotten campaign"

By Keir Liddle

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If you are interested please email me here.

A long time ago, in fact a shamefully long time ago, I hit upon an idea for some constructive Skeptical activism. Regrettably since then real life that thing that plagues us away from keyboard, took precedence and the idea remained just that an idea.

I still don’t have enough time, what with PhD to complete and other skeptical commitments, to take it forward on my own but I wanted to revisit it and apologise to all the people who offered help and assistance in response to this post.

The idea remains centred around what I feel is one of the central issues in modern skepticism concerned with alternative medicine in that as skeptics we currently are ill placed to offer those who seek the hope of alternative treatments anything other than the cold harsh reality of evidence.

A quack can promise a full recovery from illness and disease, a quack can promise a lifetime of perfect health, a quack can promise the Earth and never deliver.

What can a skeptic promise? Regrettably not much more than the dusting off of lofty academic tomes and studies in order to tell people that the promises of a quack are empty. We can do nothing for a vulnerable an desperate individual seeking some small dim ray of hope for a terminal or chronic condition.

Currently we can only tell people that they have placed their hope in the wrong hands. Given that it is really small wonder that Skepticism and Skeptics are often viewed with either a sneering contempt or negatively.

We are those who dash false hope while seeming to be more concerned about being “right” than being “right“.

I feel this toxic view of Skeptics is unfair. Many are motivated, as I am, by a desire to prevent people being taken in by quacks and charlatans. Motivated by a desire to save people the pain of false hope but what do we over in it’s place? Almost nothing regrettably.

There are I feel a number of ways to remedy this. We can try and ensure that where alternatives exist we highlight and report on these so people tempted by the promises of those with miraculous snake oil cures have somewhere else to go and we could ensure that there is someone there to pick up the pieces when false hope inevitably fails to deliver.

These are not easy tasks by any means. It is difficult for skeptics to research both why a treatment or alternative health modality works while also researching the alternatives (if indeed there are any alternatives to research beyond palliative care). It is also difficult to expect individuals who find themselves dealing with these issues simply because they tweet or blog about the failures of alternative medicine to offer legal or psychological support to those harmed by them.

So I propose, again, a fairly simple thing.

Directories of information are available online from a number of reputable health charities internationally offering advice on treatments for specific conditions and diseases. We could and should try to point people who come to read our debunking posts towards these directories so if an evidence based treatment for their condition is available or there is the option for them to get on a potentially life saving clinical trial they can.

This is in theory a relatively easy thing for us to do, though it may be difficult in practice but the next point is not.

How do we support those who have been harmed by alternative medicine? How do we advise them on their legal position if a treatment has failed and left them with a huge amount of debt? Who do we send the victims of quacks to for counselling and support if they should feel they need it?

At present I have no idea. But I still think it’s something that we should be finding out. Regrettably I don’t have time on my own to explore these issues as fully as I would like (or if I am honest I barely have time to explore them adequately at all). But it does trouble me that since November 2011 I have done very little to pursue the idea of helping those harmed by alternative medicine forward.

I want to take at least one small step towards changing that today.

I prose that interested parties reading this blog (in the UK and internationally) get in touch with me and we form a steering committee. This committee would formulate the ideals and values upon which any future endeavours are based. It would seek out resources, initially at least, that could be used to help those who feel they have been harmed by alternative medicine.: these would likely incorporate elements of legal advice and finding out where access to counselling and other health services can be found.

We will likely have to take it slow at first, I know that I have no time to do this by myself,  but there is no reason that we cannot start to do this together.

Please spread the word and please consider helping. Even if you are only sharing information about services that might assist and don’t want to be directly involved.

Let’s show people that despite their prejudices skeptics do care. Let’s show people that we haven’t forgotten about the victims of quacks.

Thank you.

If you are interested please email me here.

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7 Responses to Not Forgotten – the "forgotten campaign"

  1. Once we have a steering group (or internationally steering groups) we can discuss further the issues, aims and strategies required to make this happen.

    Though I suspect at least one crowd funded position will need to be created eventually to develop and take forward the idea.

    I’m putting my hat into the ring for that one now for some point in the future. But obv. I think the idea is too important for me to claim ownwership of it and future discussions might entail actually raising funds to employee someone who has professionally worked in medical charities.

  2. Count me in.

    I’ve had quite a few people contacting me asking me for medical advice, either via blog comments or by private email, for example if I’ve blogged on a particular alternative treatment (eg Arthroplex). I’ve always been careful to make it clear I’m not a doctor and generally suggest people speak to their GP. I sometimes also link to relevant pages on NHS Choices and/or to reputable charities which may also have information on general support as well as on treatments.

    I have also been contacted by a handful of people who feel they have been harmed by a particular alternative medicine practitioner. They found my blog after googling his name. I did my best to give what advice I could at the time.

    Here are the results of a later brainstorming exercise of various UK authorities (though I missed out the GMC):

    http://josephinejones.wordpress.com/2012/10/09/who-can-i-complain-to-about-errol-denton/

    To date, I haven’t been contacted by anyone who feels they’ve been harmed by any alternative cancer treatments or practitioners but I know of a couple of people who have and will get in touch with you about those.

  3. Josephine, I fear that referring people to their GP won’t help much. It’s because they are dissatisfied with what the GP has to offer (or, all too often with good reason) with the amount of attention and information that they get from their GP, that they fall victim to the quacks.

    Or it may be that there *is* no way of helping them, and they’re chasing shadows. Either way, giving medical advice is a minefield.

  4. I don’t expect people will necessarily take the advice to go to the GP but I think sometimes it needs to be said. And it’s sometimes worth pointing out that you can ask to see a different GP.

    It is a minefield and to be honest, it’s hard to generalise here – but I think it’s always important to make it clear that we aren’t in a position to give medical advice and then to mention those who are in such a position.

  5. Jo Brodie says:

    Count me in.

    Actually when I worked at Diabetes UK we always prefaced information given with the recommendation to seek the advice of a doctor (or pharmacist etc as appropriate). It’s basically the default position of making it very clear that (a) you aren’t medically qualified and (b) even if you were you have no access to that person’s medical history and for both of those reasons you can’t give tailored ‘medical’ advice etc.

    Plenty of people understand this perfectly well but I’ve spoken to quite a few over the years who were convinced I was a doctor or practising scientist and wanted me to give them ‘the answer’. Also I think that the style of writing we tend to have – factual and cautious – can make some people think we’re in positions of some authority. This is obviously stronger when you’re writing on headed paper from a major health charity.

    Another thing I really benefited from while working there was our team of Careline counsellors, with whom we (Science Information people) worked extremely closely. People who were worried about something might call them and if some ‘science heavy lifting’ was needed they’d pass them to us. Equally we’d get some terribly sad letters and emails from people who’d read of some wonderful cure and wanted to know the science behind it. But reading between the lines there was often a “…but if this turns out to be rubbish what is there for me?” and Careline were excellent in helping us in improving our more technical responses.

    Goodness I have rambled a little there haven’t I, sorry!

    Anyway, this also sounds like something that could be of interest to the Association of Medical Research Charities, the Patient Information Forum and of course Sense About Science.

    I’m afraid I know nothing about strategies for redress against treatments that haven’t worked (in that they could never have worked, rather than treatments that just ‘haven’t worked’).

    My interest in skepticism really burgeoned while working there – we often received copies of rubbish adverts and I got increasingly annoyed with thinking “surely people can’t get away with saying that” and then gradually realising that there are things that can be done to try and address it.

    Jo

  6. David James says:

    You can count me in.

    I’ve spent a lot of time over the last decade helping people (who care to listen) make sensible decisions about their healthcare. For some reason, despite no training, people are happy to listen to my opinions. We all have stories of people taken in by some alternative modality. Occasionally we hear the stories from when they’ve realised it’s not working or they’ve been ripped off. Sadly the latter doesn’t tally with the former. There are too many people taken in by alt-med for too many reasons to list, but if we can help in anyway it’s worth a shot.

    This is clearly something that needs to be explored more fully.

    Dave

  7. Lynne says:

    What you are suggesting brings to mind the example of Bob Blaskiewicz on his blog “the Other Burzynski Patients”, wherein he ends each post with a suggestion to donate to St. Jude’s Children’s Hospital “where they care for children who can’t pay”. Each one of those horrible stories ends in a small note of hope and purpose.

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