CAMPAIGNING AGAINST BENZOS

I have been chatting to Barry Haslam who has campaigned against benzos for decades here in the UK.  He sent me a link which I posted on Facebook.  I added the following commentary.

 

The issue of benzodiazepines is a national scandal.  You may think this has nothing to do with you.  You have not taken sleeping pills or tranquillisers.  But if you go to a doctor and expect to be treated safely then it is of great interest to you. I cannot put it more strongly than this.  And if things go wrong, don't expect any help from the Government. Don't expect compensation from the drug companies.  You won't get it.  Don't even expect to know the truth, at least not for decades.  Most of us are not attractive to the "No Win, No Fee" brigade. A class action was attempted in the UK in the 1990s - the judge threw it out of court.  It wasn't worth pursuing.  Thousands of patients were involved.

 

For many decades, patients have been turned into dependent drug users and when they try to stop many suffer horrific withdrawal, beyond your imagination, some are left permanently disabled. People commit suicide because they cannot stand it.  I am lucky, I am now recovering.  Others don't. Some are brain damaged.  There are very very few support services, GPs continue to prescribe these drugs, they misdiagnose withdrawal as some other illness and often more pills are prescribed.

 

Over one million people are dependent on benzodiazepines in this country.  They risk premature death and possibly Alzheimer's disease due to these drugs.  This is not to mention the poor quality of life that most dependent users experience, often for decades.  I read a very recent report by the British Medical Association.  They conclude that GPs are inadequately trained to deal with patients dependent on prescribed drugs, there is a lack of specialist services to deal with such patients and there is a dearth of research on the subject. REALLY!!  AFTER DECADES OF KNOWING ABOUT THIS PROBLEM.

 

And finally, how much is all of this costing the British taxpayer? The catalogue of ill-health, unemployment, underemployment, doctors’ visits and so on and so forth.  Yet our NHS is in crisis.  And so we create another problem with anti-depressants.  Yes this does affect you, it affects every one of us.

 

Facebook, 4th November 2015

 

I don't know if anyone will pay any attention to my post or if they will share it or not, apart from those who are sufferers themselves.  However, this gives an idea of my thinking about this issue.  Those of us suffering, we are in the know, we are on the relevant websites etc but most people have no idea and have no interest because they don't see it as relevant to them.

 

Now I firmly believe that we can all do something, however, small.

 

I have been inspired by Barry Haslam,  He has been permanently damaged by these drugs, he is not well, yet he has not given up.  And he is lovely to talk to. 

 

This may be a good time to try to once more publicise this issue in the UK.  It is already happening.  Just as it is in the US.  so if everyone can add their voice, think how loudly we could shout.  :)

 

I thought this was not a big issue in the UK.  There are not many folk here from the UK.  It seems it is very much a hidden problem. 

The support services provided in Bristol keep stats of the number of people they help.  About 300 a year.  If you extrapolate that to the whole of the UK, it would be 30-40,000.  Some phone the helpline daily, some less than once a week.  Some get face to face support, others manage without it.  A good proportion come off their drugs.  You can look at their annual reports here but the stats are not very detailed.  Nothing about how long to recover etc. 

 

http://www.btpinfo.org.uk/Annual-Report

 

I will keep posting here about what I am doing/trying to do.  I would love feedback, ideas and you can share anything you have done, however small.

 

THANKS SO MUCH, FIONA!!!

 

What kind of campaign would you imagine for the U.S., for instance? The benzo problem is very large here. I'm not on Facebook or I would be posting there as well.

Fiona-

 

My dear friend. We are but the tip of the ice-berg. I have read that 15 million people are in benzos worldwide. This will become a worldwide problem sooner rather than later. There is too much emphasis on medication in this world. Medications do not eliminate the root cause of anxiety, etc.

 

Big Pharma must be laughing their asses off..

for Barry!

 

Once in awhile I repost benzo information to my FB page.  Not too often or people won't pay attention.  I've had several people contact me outside of FB for help as a result.

 

One at a time...

Hi folks

 

Facebook problems

 

I am a Facebook novice.  > In fact I don't really like it but it has its uses.  I shared a web link and my commentary on my FB page.  Now I thought if people forwarded it on my commentary would be forwarded also but no apparently that is not the case.  I also found out that one can share a post publicly so anyone can see it, not just my little circle of friends.  OK, so I reposted with my commentary for all the world to see.  Now I have no idea who will come across but it is out there now in cyberspace.  :thumbsup:

 

US campaign

 

I am not sure about what can be done in the US.  It is such a different country from the UK.  Such a huge problem you have for sure.  And the power of the drug companies seems to be greater in the US but I am not sure about that.  Perhaps it is as bad here,  I don't know.  We don't have drug advertising which I think is a great thing. I have the impression that legal action is easier in the US but i might be wrong in that. 

 

I think each of us can publicise the issues in a small way.  You can write to your politicians, you can tell them your story, what you have seen here on BB.  What you have read about the subject.  You can write to the press.  I do understand if you don't want to make yourself known publicly.  But you know Barry Haslam has doggedly campaigned most of his life.  He isn't able to work so he has had time.  But he is not well.  He has compiled so much information, he has his website, he has offered support to so many others in withdrawal and maybe just maybe he will see some results in his lifetime.  I don't think we will ever get legal redress or compensation but I am hopeful we might get a national helpline and support services for those who wish to withdraw plus a greater effort to reduce prescribing.

 

Without the support of someone in power or someone with influence it is hopeless.  I think we have been lucky that Luke Montagu, future earl of Sandwich has been so badly affected.  His uncle is a member of the House of Lords.  They have contacts, influence.  There have been MPs in the past who have taken up the cause but this has not resulted in much action.  Having a celebrity on board would be good. 

 

The publicity being generated by Mad In America and those writing about the subject - the greed of the drug companies, the duplicity, I really think this is all going to have an impact in time.  The concern about mass shootings and drugs. Your country cannot afford to have all these people on drugs and disability.  Surely something has to happen - something positive I mean.

 

Scotland

 

I have written again today to the Minister of Health in Scotland.  She replied to me but I realise now I was just been fobbed off. 

I asked for specific facts and figures for benzo prescribing in Scotland.  I don't expect to get them but then I can ask why they are not being collected.

 

I have spoken to those in charge of one of the support charities in Scotland and  I got a very different picture indeed.  She has been invited to the next meeting of the All Party Parliamentary Group in which Luke Montagu is involved so I now know that she will know exactly what is going on in England.

 

As long as we all do a little, it will add up.

 

Fiona 

Thanks for all of your help in this, Fiona!!

 

Yes, writing to those in government here in the U.S. is my next step!! Thanks so much for the inspiration!!  :thumbsup:

You are welcome, Terry.

 

You can only do as much as you feel able, you know.  I am just lucky that my brain has cleared and I can now think, read, remember and concentrate.  Before I couldn't really do very much at all.

 

We can all do different things too.  Some can support others, perhaps set up a group when they are well.  I don't want to do that. Stay on BB and support others here.  We can all do something, however small.

 

Hugs

 

Fiona 

 

 

 

 

Hugs to you, too, Fiona!! 

Hugs to you too Fiona! Good writing on your part.  I have written to the FDA, my congressman and senator about the problems not only with benzos but other psych drugs. I get little response. I joined Facebook benzo sites but stop posting there because that hate blog has found a way to copy and paste a whole bunch of them.

Good for you.  :thumbsup:

 

on no.  he hasn't!!!  >

 

 

Fiona 

 

 

What hate groups, benzogirl?

 

It is just an individual, we don't mention his name here. 

 

:(

I know most of you are probably not well enough to think about this but I will continue to post my ideas/activities.

 

World Benzo Day

A few of us are thinking of a World Benzo Day next year to highlight this issue (Barry Haslam, myself and Wayne in Japan) and perhaps every year thereafter until something is done.

 

Twitter

 

I have started using Twitter - a new venture for me.  Last night I tweeted the UK Prime Minister and various politicians both in England and in Scotland.  I even included my video in some of my tweets.  Anyone can use Twitter, anyone can tweet.

 

Newspapers

 

I have written to several national newspapers and included my video.  I will have to make a new video specifically for the purpose of circulating to politicians.

 

I don't expect any responses but will keep trying.  I might get lucky.  :thumbsup:

 

Fiona, thanks again for what you're doing to raise awareness!!  :thumbsup:

 

I wrote an email to Nancy Pelosi yesterday. She's our representative here in San Francisco. I want a list of people I can write to in government to call attention to the swept-under-the-rug aspect of benzo w/d. I'm appalled that we all have to go through such a very, very long w/d, particularly after my next door neighbor, a pharmacist, told me last weekend that "withdrawal can last for years." I'm angry that two of my doctors brushed it off and said that it should only last a month, max (when I was in the hospital last year in April, after stopping Klonopin in March of 2014). They both said it with such authority, and I was furious. My son wanted me to be quiet and not be disrespectful to the ER doctor, but I'm still fuming over this.

 

 

Fiona, thanks again for what you're doing to raise awareness!!  :thumbsup:

 

I wrote an email to Nancy Pelosi yesterday. She's our representative here in San Francisco. I want a list of people I can write to in government to call attention to the swept-under-the-rug aspect of benzo w/d. I'm appalled that we all have to go through such a very, very long w/d, particularly after my next door neighbor, a pharmacist, told me last weekend that "withdrawal can last for years." I'm angry that two of my doctors brushed it off and said that it should only last a month, max (when I was in the hospital last year in April, after stopping Klonopin in March of 2014). They both said it with such authority, and I was furious. My son wanted me to be quiet and not be disrespectful to the ER doctor, but I'm still fuming over this.

 

Good for you, Terry.  I have just contacted the local press.  It is just a small newspaper but it covers quite a wide area in the north o Scotland.  If one of the national (Scottish) newspapers catches on maybe it will spread.  We will see.  Maybe radio or TV, the English press.  I just decided today I can't wait around for other people to do something, I need to do something NOW.  40 years is too long.  I have to act. A newspaper article will give me something else to circulate on Facebook and to tweet to politicians.  :D

 

I am learning fast.  I don't think a book is the way to go.  >

 

Will keep posting and well done, again.  :thumbsup:

Fiona, I have been following your thread, and thank you for thinking of trying to help us all and others that may have to be on benzo's, I will try to think of something to do, I must tell you, that Tweeter threw me off their site only on for two days, still don't know what I did wrong, but I am sort of vocal, about things I believe in. I can not figure out facebook, and I would only use to get message out. I will have my own Internet, next Tues, for sure, and I will start to think of someone to write. I know what benzogirl is talking about, I accidentally hit wrong site, when I was really in deep brain fog, and I was amazed that things we discuss here and pictures of a BB was on site, it was really really scary. You are such an inspiration to me. Stay Strong my Friend. 

Thanks, B.

 

Yes, the internet is a dodgy place at times but I think the US is a more difficult place to be by the sound of it.  I think I am okay here in Scotland.  I am still naive about what goes on but I am learning lots. And really the movement is already happening here in the UK, I am just adding my little voice to what is happening already.  And maybe if we have enough voices we might eventually be heard.

 

I don't like Facebook. Rarely used it before this but it is a useful mechanism to put out a message.  As is Twitter, never used it either until yesterday.

 

Just do whatever you can.  It all matters, it all adds up.

 

Hugs

 

Fiona 

 

I think it's going to end up that large groups of people will end up forcing a change and nothing else. Government, the FDA, the NIH, NAMI, and the medical and psychiatric communities seem to be either asleep at the wheel or don't want to let others know the truth.

Hi Terry

 

Yes, large groups of people do need to band together to effect change.  Today I looked up the Chief Executive of my local Health Board. I had forgotten who it was.  I used to work for him, not closely at all, he may not remember me though we have spoken on a number of occasions.  So I wrote another email.  I know that the US health care system is very different from the UK and Scotland is very different from England.  It is a small place, population 6,000,000.  People know each other especially those in power.  I reckon if I can get one or two people to see that this is an important issue, not just for me, but for the health service and indeed the economy (always a good one!), I might just get somewhere.

 

Dear

 

I will try to make this as brief as possible as I know you are extremely busy.  I don’t expect you to remember me but I worked for xxx in Aberdeen as Research and Development Officer for many years.  I had to retire on the grounds of ill health in 2012. 

 

I would like you to listen to my video which lasts 15 minutes.  I think it is important.  It contains personal details but I can no longer remain silent on this issue. The video was recorded for fellow sufferers but of course could be re-recorded for doctors and other health care professionals.

 

video accessible via website in signature

 

As described in the video, I changed GP practice in 2013.  I was advised to stop taking nitrazepam which had been prescribed in 1975 for myoclonic epilepsy - I assumed this was a lifelong condition.  I have endured the most terrible protracted withdrawal and have been BEDRIDDEN for TWO YEARS.  I won’t go into the details of it all but it is the most horrendous experience which you cannot begin to imagine. The details are in the video.

 

Neither my GP nor the psychiatrist to whom I was referred correctly diagnosed that I was suffering from protracted benzodiazepine withdrawal syndrome although I knew without a shadow of a doubt what was wrong.  It is clear that doctors have no idea what they are doing in respect to withdrawing from these drugs despite the excellent work of Professor Heather Ashton, University of Newcastle on this subject.  They also seem to have no idea of the devastating effects on the people taking them.  I am very angry.

 

http://www.benzo.org.uk/manual/

 

The ordeal of withdrawal was bad enough but since stopping the drug, I have been finally set free from 40 years of depression. Can you even imagine that?  I was always under the illusion that I had a depressive illness.  It is clear to me now it was the debilitating effects of the drug. Yet no doctor ever realised that nitrazepam was in fact making me ill. My life has been absolutely ruined by that drug.  However, I am fortunate, I am recovering.  Others are not so fortunate and find themselves permanently brain damaged, disabled or in constant pain.  This is all wrong, simply wrong.

 

I am sure you are aware of the whole saga about benzodiazepines stretching back to the 1970s and still we have no research into the long term effects of the drugs, no support for those attempting to come off them apart from a few small charities and one or two NHS facilities across the UK.  The recent BMA report on this subject identified inadequate training for GPs.  This beggars belief after so many decades. 

 

http://bmaopac.hosted.exlibrisgroup.com/exlibris/aleph/a21_1/apache_media/H6IB5G1BL8SX1KJ7VY4MCRCXVG6EV7.pdf

 

We now have an All Party Parliamentary Group in the House of Lords, thanks to Luke Montagu, future Earl of Sandwich, also a victim and awarded over £1m in damages.  The Group is calling for research, support services and a national helpline. I don’t know whether to hold out any hope of action being taken for NHS England. 

 

I wish I was the only victim of these drugs but sadly there are thousands in this country.

 

I would like to know what my local health board is doing about this issue. The risks of premature death and possibly Alzheimer’s Disease are well publicised so I am at risk of both.  I thought it was a risk I had to accept, now I know that this was not the case at all, I did not need to be on this drug for 40 years.

 

If there is a drive to get people like myself off these drugs, people who have been on them for decades, it is imperative that doctors know what they are doing.  I don’t want anyone else to endure what I have endured.  Doctors need to be educated and educated by patients who have gone through this.  They need to understand the fear and panic felt by the patient when the suggestion to withdraw is made. No wonder patients do not want to come off their drugs.

 

I would be happy for my video or a different version of it to be shared with GPs in the Grampian area.  Even if one GP in every practice was made aware of the Ashton manual and my video just to explain, it might be a start.  I would also like to see GP trainees made aware of this subject.  A 15 minute video can be more powerful than anything in print.  I appreciate you are no longer involved with medical training but I am just making the suggestion.  I know you are in a position to influence matters.

 

Doctors need to be informed.  They need to know what they are doing to patients.  They are ruining lives.  I know I am not alone.  I wish I was.  They need to understand that these drugs befuddle the mind, suppress the emotions to the extent that people like me go through their entire lives not thinking clearly, not understanding why they are ill.  Indeed, we completely forget what it is like to be well and we accept getting progressively more ill as the years go by.  I was fortunate that I was able to work but it was an immense struggle EVERY DAY feeling ill and cognitively compromised.

 

Doctors simply prescribe MORE DRUGS in an attempt to treat the symptoms. I took anti depressants for 35 years, they did no good whatsoever.  How much have I cost the health service in 40 years?  It beggars belief.

 

At a time of year on year increases in prescribing of psychiatric drugs, my message is an important one.  I really wish to offer my story as a way of improving what is happening to patients in this area.  I hope you will do something to make things better for the patients of Grampian and hopefully the rest of Scotland.

 

Thank you for taking the time to read this.

 

 

 

The Scottish Government is seeking the public's opinions on the way forward for health in Scotland in the next 10 years.

 

http://healthier.scot

 

So I made the following submission.

 

******************************************************************************************************

 

I wish to see a reduction in the prescribing of mind-altering substances in this country. Doctors are making people sick.  There is no good scientific evidence for the long term prescribing of psychiatric drugs.  In fact the evidence shows that they do more harm than good.  This is a recent conference held in London on the harm being caused by psychiatric drugs. 

 

https://www.youtube.com/results?search_query=council+for+evidence+based+psychiatry

 

I also wish to see support services for those withdrawing from these drugs. There is next to nothing available for patients like myself.  The Scottish people deserve better than to be incapacitated for years on drugs that are of little known benefit.  Not only would individuals feel better, the health service and the overall economy would benefit.

 

 

1 Increased prescribing of psychiatric drugs in Scotland

 

I have read with dismay the recent report by ISD Scotland on the prescribing of psychiatric drugs in Scotland.  In particular, the 67% increase in anti-depressants over the past 10 years,  43% increase for anti-psychotics and 146% for ADHD drugs.  The number of patients receiving anti-depressants has increased by 29% in 5 years and now stands at 814,181 patients.  This is a sad indictment on our society.  It is also a huge cost to the taxpayer and our economy.  I was pleased to read that the Scottish Government had set a target to reduce the prescribing of antidepressants but disappointed to read that this was abandoned.

 

2 Antidepressants little better than placebo

 

I have only recently been made aware that there is absolutely no scientific evidence that supports a biochemical imbalance explanation for mental illness.  (Depression Delusion, 2015, Terry Lynch).  This myth has been perpetuated for decades by the drug companies with a view to maximising their profits  Antidepressant drugs are popularly thought to correct a chemical imbalance.  In fact, all they do is alter the brain chemistry.  The drug companies have lied about the benefits to patients, concealing the negative results of clinical trails and promoting the positive results. Research evidence now shows that patients do little better than on placebo.  More information on this issue is available at  www.cepuk.org

 

3 Doctors are making people ill

 

I have a personal interest in this subject, having suffered from depression for 40 years and taken anti-depressants for 35 years.  At age 60, I am finally free from this terrible feeling.  I am no longer taking any prescription drugs. I had no idea that nitrazepam in particular was making me feel so ill and had done so for decades.  I have cost the NHS so much money over the past 40 years and I am now firmly of the opinion that this was totally unnecessary.

 

Many GPs in this country have no idea what they are doing when they prescribe these drugs. They don’t understand the impact on people’s lives.

Indeed they do not even seem to be aware of the fact that there is no scientific evidence whatsoever for the chemical imbalance theory.  This video which was uploaded to YouTube in 2011 by Dr Chris Steele who appears regularly on the TV Programme “This Morning” is an excellent example.  He is deceiving viewers and presumably himself as well. Despite critical feedback,  he has not removed it.

 

 

 

4 Benzodiazepine / antidepressant dependence/ withdrawal

 

It has been known for many decades that benzodiazepines cause dependence and withdrawal can be horrific.  I can attest to both myself.  These videos contain a Brass Tacks documentary from the 1980s.  You may not have time to listen to them but they illustrate how long this issue has been ongoing.

 

Dangers of benzodiazapenes part 1: www.youtu.be/q2iZQ9tVSAU

 

Dangers of benzodiazepnies part 2: www.youtu.be/OWHKri71qaE

 

And now similar problems are coming to light as patients try to withdraw from antidepressants. Yet, the prescribing of antidepressants continues to rise. 

 

www.survivingantidepressants.org

 

 

5 Lack of support/lack of knowledge of benzo withdrawal

 

It is appalling after decades of awareness of this problem that GPs remain inadequately educated on the subject of benzodiazepine withdrawal, as highlighted in a recent report by the BMA. 

 

BMA (2015) Prescribed drugs associated with dependence and withdrawal - building a consensus for action.

 

This is despite the excellent work conducted by Professor Heather Ashton of Newcastle University.  The Ashton manual was published in 2001.

 

http://www.benzo.org.uk/manual/

 

There are few support services available for patients who try to come off these drugs.  Many of course will withdraw fairly easily, many however will not.  The numbers of patients involved is not known because no data are collected by the UK Governments.  There are however support services available to those who are addicted to illegal drugs.  These services are not appropriate for patients who are dependent on prescribed drugs.

 

There is now an All Party Parliamentary Group convened in the House of Lords to press for action on the issue of prescribed drug dependence.  They are calling for better training for GPs, specialist services for patients attempting to withdraw, a national helpline and more research into the long term effects of these drugs.

I am not aware of a similar initiative in Scotland.

 

 

6 Economic costs

 

Apart from the misery caused by psychiatric drugs, how much is it costing the British taxpayer to have so many people disabled by their long-term use. We can’t afford our health service but we can keep people drugged for decades making it impossible for them to function normally.  Benzodiazepines have been shown to cause premature death and possibly Alzheimer’s disease. And now it would seem we are repeating the same cycle with anti-depressants.  The long-term effects of these drugs are unknown as yet.

 

 

 

Petitioning the Scottish Government

 

 

I don't know if this process is available in other countries.  It simply means presenting a case on an issue to a Committee and possibly speaking to the Scottish Parliament itself.

 

Anyone can submit a petition.  It does not involve collecting signatures.

 

I would do this next year if nothing seems to be happening.  :thumbsup:

I have now contacted national television and more newspapers.

 

Today I phoned the office of my MP (London) and MSP (Scottish Government).

 

Excellent conversation with MP's office, aware of all the issues involved, going to speak to my MP tomorrow and get back to me.

 

Told me about the All Trials Campaign here in the UK to get all drug company clinical trials registered.  I was not aware of this.

 

http://www.alltrials.net

 

 

Hi Fiona

 

Have you come across the Scottish Recovery Network?

 

http://www.scottishrecovery.net/Introducing-SRN/introducing-srn.html

 

They are involved in the politics of mental health in Scotland and are interested in people's stories.

Fiona, the All Trials Campaign sounds GREAT!! I wish there was something like this in the U.S. The public needs to know ALL the data instead of some false rosy picture that big pharma-sponsored clinical trials presents. 

Thanks, Rhu, I will have a look at that website.

 

Terry - I sure was pleased to find out about the All Trials Campaign.

 

Maybe developments in other parts of the world will enable US citizens to press for change in the US.

 

I do hope so.

 

Fiona