Depression Alliance – such an attentive and caring charity…

You’d expect a reputable Charity would welcome being told by a member of the public if it had got some important news items ‘wrong’ and published them in error.

That is unless the Charity is the Depression Alliance….

14 July 2006

Dear Depression Alliance

I’m writing once again (18 May, 19 June and today – 14 July) to remind you that I’m still waiting for a response to issues that I raised in my email of 18 May.

I might add that my 18 May email followed on from other emails asking the same question (27 April, 11 April, 8 March and 10 Feb).

Perhaps you can tell me when I can expect a reply?

and then

20 July 2006

Dear Office ( I hope you don’t mind first names – ‘Office Volunteer’ sounds so formal…)

Thank you for your reply of 18 July. As suggested I have re-read the letter from Alison Lawrence that I received on the 9 May.

However as I thought, this particular letter does not mention the mythical All Party Parliamentary Group on [Clinical] Depression or the questions I asked about it.

Do I really have to point out AGAIN to you that this group has never existed or done any work, therefore Depression Alliance has never “serviced the work” of the group – nor will you.

So, I have some new questions:

1) Do you feel you are misleading the public on this matter?

2) If not, will you please tell me why not.

2) Will you remove all reference to the Group from your website and literature?

3) If you feel unable to remove all reference to the Group from your website and literature, will you please tell me why not.

You’d expect a Charity would quickly ammend its website to make a correction, wouldn’t you? Or maybe even reply to the email….

That is unless the Charity is the Depression Alliance….

However once the Charities Commission got involved, it took just under a month to get Depression Alliance to remove offending ‘news’ item from their website.

You’ve got to wonder if there’s any other information on their website that’s…well, not strictly accurate…?

5 Responses to “Depression Alliance – such an attentive and caring charity…”

  1. seroxat secrets… What a tangled web we weave... « Says:

    […] Depression Alliance – such an attentive and caring charity… […]

  2. truthman30 Says:

    It reminds me of “Aware” , a National Irish Depression Support Group…
    Their Website is sponsored by Lundbeck Pharmaceuticals ( The biggest Distributor of SSRI’s In Ireland) ..

    http://www.iol.ie/aware/index.html

    I have campaigned for a long time about this and the pharmaceutical sponsored psychiatry in Ireland…
    And the inevitable conflicts of interest and damage to patients health that it brings…
    And thankfully the last few weeks , the government has finally started to investigate..

    http://www.unison.ie/irish_independent/stories.php3?ca=9&si=1821883&issu&issue_id=15572

    http://www.network54.com/Forum/281849/message/1177943507/The+drugs+don%27t+work%2C+warn+top+psychiatrists+……Ireland

    A DAMNING indictment by the country’s most eminent psychiatrists paints a picture of patients’ lives being needlessly put at risk by a cocktail of dangerous drugs, and a profession which is in the back pocket of vested interests in the pharmaceutical industry.

    “The psychiatric world has to be cleaned up – it’s appalling. There are over 200,000 people on over-the-counter tranquilliser drugs,” says Dr Michael Corry, a consultant psychiatrist. “In Ireland, there are 25,000 people on Zyprexa and 20,000 people on Seroxat. With Seroxat, there is a one-in-500 suicide risk. They get totally overwhelmed by a sense of disinhibition, and they literally feel they can’t go on, and they killthemselves.” Coincidentally, a damning Oireachtas report on the adverse side effects of pharmaceuticals, which was released last week, has come to more or less the same conclusions.

    http://www.rte.ie/news/2007/0424/9news_av.html?2241667,null,230

    Nuria O’ Mahony made headline News on the 24th of April ..
    Her Husband killed himself on Seroxat

    http://216.239.59.104/search?q=cache:_KhelucLBlMJ:psychrights.org/Countries/UK/ExecReport4HealthComm.pdf+nuria+O+mahony+seroxat&hl=en&ct=clnk&cd=1&client=safari

    You can see from the Irish government Inquiry documents above details of how GSK SYSTEMATICALLY hid and manipulated data
    concerning Paxil/Seroxat/Paroxetine-induced suicidality in depressed ADULTS. It also documents
    how GSK hid the incidence of Paxil/Seroxat/Paroxetine-induced akathisia and stimulation. Akathisia
    and stimulation are risks factors for suicidality and violence. GSK failed to release its complete data
    concerning rates of suicidality on Paxil/Seroxat/Paroxetine. In the information that was originally
    provided to the FDA, the number of suicide attempts on Paxil/Seroxat was UNDER-
    REPORTED and the number of suicide attempts on placebo was INFLATED…

    At least now the Irish government is listening and proposing changes for the IMB ( the Irish Equivalent of the MHRA) , the IMB is funded by the industry , just as the MHRA is, but new laws being proposed wiil be changing this..
    Until the UK government begin a proper inquiry into the behaviour of the pharmaceutical industry and their unhealthy domination of the UK health system from sponsorship of research to conflicts of interest arising from donations to charity and funding of the MHRA , things will not change…

  3. seroxat secrets… Top posts for May « Says:

    […] Depression Alliance – such an attentive […]

  4. Cedders Says:

    I do know I’m responding to a very old thread, but this is a very long-running story. I was involved in Depression Alliance from 1995-2000, on its committee at the time Rodney Elgie was director. I can confirm the “All-Party Parliamentary Group on Depression” did in fact exist at least in the late 1990s, and I recall at least one public meeting in Parliament with talks from Claire Rayner and John Hutton MP. Note that an APPG is very different from a select committee, and quite easy to establish without much documentation. If I recall correctly, Julie Morgan MP was the main chair/sponsor, and it was really an initiative of Eli Lilly to which Depression Alliance (DA) could attach its name. Officially in so far as it had any purpose it was to increase awareness of depression and its supposed “under-diagnosis”, reduce “stigma” (ie discrimination) and so, but of course the main covert cause of it was a desire for better return to shareholders.

    Depression Alliance was formed to promote mutual self-help between people with depression and originally was entirely user-run. I believe its self-help groups and other activities are invaluable and have increased many people’s confidence in tackling problems, and saved many from suicide. Unfortunately noble intentions can be easily perverted by unscrupluous drug companies, particularly where charity officials are insufficiently informed, vigilant or in some cases tend to the venal. A typical method of this perversion of public message is a PR company ghost-writing the first draft of an organisation’s publications and being responsible for publication and distribution, just like the problem of ghost-writing scientific papers that David Healy highlighted. It’s less to do with the sum of money an organisation receives than the amount of control it retains.

    By the way, I myself had distinctive experiences coming off Seroxat way back in 1993; 20mg was sedating and eliminated dream life but had no effect on depression, so after several months, I just couldn’t raise the motivation to renew the prescription or even arrange to see the GP. The withdrawal effects were very marked and would have severely affected my functioning had I been working or driving, but as I wasn’t it was more like having spent 5 hours on funfair rides: spells of diziness, mild spasms and very vivid dreams. In fact the rebound effect was confirmation that the drug was useless at least for me, because the rebound was more of a shove in the right direction than the opposing “chemical cosh”.

    However, meeting a lot of people with depression, one has to accept that “mileage may vary”. From that one can too easily buy into the idea that since (a) the drugs seem to help some people and (b) it is vitally important that people feel able to talk about their experience and seek help, then there is some rough congruence of interests between manufacturers and people wanting to help each other to improve their mood and quality of life. Even if that is the case there is no justification for a lack of transparency or allowing a good cause to become a front for commercial promotion. I wasn’t immediately aware that the main motive was the race to exploit a drug’s limited patent life, and evade the Medicines Act’s prohibition of promoting prescription-only medicines to the public by working through credible intermediaries. Not all publicity is good publicity, at least in so far as helping people. One particular conflict was a survey I assisted into paroxetine and sleep as part of a campaign also supported by a “depression and sleep” leaflet: it took several attempts to get the survey stats back and they generally showed paroxetine as more disruptive to sleep than other ADs (may not have been statistically siginificant).

    What is clear to me is that there are major institutional problems here resulting in expedient but distorted information being given to users and patients and an undermining of true understanding of depression and associated conditions; ultimately poor regulation is causing a lot of poor health, including some of the cases of suicide or addiction you mention. There are billions wasted on PR bollocks rather than anything useful. The solution may be major restrictions on lobbying by corporate interests and massive redirection of excessive blockbuster profits into pure research, where they will further genuine research (not copycat drugs & enantiomers) in place of creating a build up of funds to develop new ways to evade regulation. Plus transparency of process, not just funding, needs to be obligatory. The irony with depression is that people who have really experienced the condition tend to be honest about their failings.

    Having realised I wasn’t effective at DA, I left, so I don’t remember meeting Jim Thomson, but I was dismayed that his attitude giving evidence to a select committee was defensive and didn’t seem to have learned anything. Some may believe that they are being responsible because they merely moderate extreme PR copy into something more palatable and “balanced” but that’s a defective process (“no strings attached” because elastic bands are used instead?). I believe Elgie went on to some breakaway “GAMIAN” group but is now retired, and I’m amused that Amelia Mustapha is now director of something called the “European Depression Association” – would be interested to see something about their governance and funding.

    Anyway although regulations need to be tightened, I hope there is much more awareness of the problems of believing or accepting the hype about antidepressants. People like Sarah Boseley of the Guardian, and victim campaigners and blogs like yours, have done great work. I am still worried about agomelatine and duloxetine, because they are still in patent and so there are still some of these tendencies at work (this is what brought me here). AllTrials may help, but is not enough. However, I do believe that Depression Alliance is now much better governed with Emer O’Neill as Chief Exec, and while all voluntary organisations must embed transparency and vigilance, they should now be steering clear of anything dodgy.


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