Benzodiazepine Medical Disaster – for journalists

Link to Victim Stories

https://nevertrustadoctor.wordpress.com/victim-stories/

Dr Des Spence, a GP in Glasgow, recently wrote the following words in the British Journal of General Practice.  He is referring to the public health disaster of drugs of dependence – benzodiazepines, antidepressants and painkillers.  It seems no lessons have been learned from the Benzodiazepine Medical Disaster which started in the 1960s and continues even today.  It also seems that there is no prospect of any positive Government action being taken to help patients wean themselves off these widely prescribed drugs which can be hugely damaging to health, often causing serious disabilities.

“I struggle to put into words the sense of shame this has brought our profession. It is a disgrace, a scandal, and the biggest public health issue of our time, an iatrogenic infection harming millions.  What is happening is wrong and wholly preventable. There is a need for a public inquiry and an urgent need to stem the relentless rise of dependence-forming medications in the UK.”   Des Spence, GP, Glasgow   http://bjgp.org/content/67/661/363

Benzodiazepines cause damage to the brain and central nervous system.  They also cause psychiatric problems, memory impairment and are strongly associated with an increased risk of Alzheimer’s and cancer.  Many thousands of patients are consuming these drugs and are unlikely to be aware that many of their symptoms of ill-health are due to benzodiazepines.  Those who develop dementia are unlikely to be told the drug may have been a factor. Many who withdraw go through unimaginable suffering and some are left permanently brain damaged (see personal accounts in this document).  Such brain damage will not be diagnosed as attributable to the drugs. Instead, patients left with serious disabilities are told their symptoms are attributable to “depression”or “anxiety” or some other mental health problem.  Withdrawal can be very severe and some of those affected do commit suicide.  Some of us have contemplated it or have contacted Dignitas in Switzerland in the vain hope they might consider ending our lives for us.  Some of us have also had our whole lives destroyed.  A complete waste of human potential and of course a considerable burden on the NHS and benefits system.

The UK Department of Health continues to obscure the issue by referring to us as drug misusers and media articles still use the word “addiction” which is incorrect.  This feeds doctors’ false beliefs’ that problems with these drugs are down to the patients “addictive personalities” and that failure to withdraw is lack of willpower.  Some patients are forced off their drugs by their GPs and then blamed for turning to the internet for an alternative supply. There is no methadone equivalent for us, in fact there is nothing for us.  We are victims in the same way as those of other medical disasters such as the Thalidomide scandal.  In fact had Thalidomide not happened, the Benzodiazepine Disaster might not have been swept under the carpet in the way that it has. It has recently emerged that the birth defects caused by sodium valproate were known about 40 years ago but not communicated to patients in case it might cause them undue anxiety.  Most patients today are still not warned of the many dangers associated with benzodiazepines.  Perhaps doctors think that the prospect of developing Alzheimer’s might cause patients some anxiety and so they keep quiet.  Most of us would argue that there was no informed consent when we were first prescribed these drugs and no attempt to keep us informed as the years rolled by.

Those of us who have withdrawn from benzodiazepines and have developed brain and central nervous system damage want our doctors to be aware that this can happen, to stop disbelieving us and to support us without doing us further chemical harm by prescribing more drugs. Everyone in withdrawal deserves help and support and to be given accurate information.  This quite simply does not exist in most parts of the country and so we have to turn to the online support groups run by fellow victims, many of whom are unwell. Some of us require 24/7 care. That should be paid for by the state. An independent inquiry needs to happen so that the reasons for this disaster can be understood.  The British Medical Association has called for a national helpline but this will more than likely be rejected by the Department of Health as it continues to claim there is insufficient evidence of potential demand.  In any case. a  helpline is in any case a vastly inadequate solution for a major public health disaster.   Strangely enough, there is a helpline available for those who do have addiction problems, including those addicted to illegal drugs.  We are not in that category.

Barry Haslam, former chair of Oldham Tranx, has campaigned for over 30 years despite being brain damaged from benzodiazepines.  He has scheduled a meeting with Andy Burnham, Mayor of Greater Manchester when he will discuss the possibilities for setting up appropriate services across the region along the same lines as those which already exist in Oldham.  He will also discuss the possibility of an independent public inquiry.

In the meantime, we, the victims of benzodiazepines, urgently request that you investigate the reasons for the lack of services for those wishing to withdraw from these toxic prescription drugs and why were they prescribed to millions of unsuspecting patients despite the high risks of dependency being known about.  As long ago as 1988, the Committee on Safety of Medicines issued guidance to doctors that benzodiazepines should only be prescribed for a matter of a few weeks.  Why were these guideline ignored for so long and why are they still being ignored by some GPs, putting patients’ health at risk?

In this document, we have tried to provide as much relevant information as possible including links to previous TV documentaries, newspaper articles, websites as well as more recent developments in our campaign.   We have also written individual letters, also contained in this document, in which we  attempt to describe how our lives have been seriously damaged or destroyed by these drugs.   Many victims are afraid to be identified, or are too unwell or traumatised to articulate their thoughts.  We feel just as abused as any other victims of abuse, we feel violated, betrayed and we are angry.  We trusted our doctors implicitly, having no idea they would betray us in this way.

Please join our Facebook page specifically set up to inform journalists.  There you can interact with some of the victims.

https://www.facebook.com/groups/175524142996973/

We have many questions.

  1. Why have appropriate support services never been set up throughout the UK to help those rendered chemically dependent by their GPs get off these drugs?
  2. Why has the example of the Oldham services not been replicated? Why have small charities been left to pick up the pieces?
  3. Why do those affected have to turn to online support groups in the absence of any effective NHS support?   Why are these groups run by victims, with no public funding to support them?
  4. Why was the NHS withdrawal clinic run by Professor Heather Ashton, Newcastle University, closed down and never replaced?
  5. Why was her research application to conduct further research turned down by the Medical Research Council?
  6. Why is Government funding focussed on (illegal) drug and alcohol addiction and not on prescribed drug dependence?  Is this a deliberate diversion?
  7. Why has research not been conducted into the possibilities of brain damage from these drugs?
  8. Why are GPs still in 2017 seemingly ignorant about the many terrible effects of these drugs or do they simply prefer to deny them?
  9. Why are patients increasingly being diagnosed with “Medically Unexplained Physical Symptoms”, a psychiatric diagnostic label, when they are clearly suffering from neurological damage from drugs of dependence? Why is this diagnostic label now being heavily promoted in the medical journals and conferences?
  10. How many patients are suffering from brain damage and neurological damage as a result of consuming drugs of dependence?
  11. Have antidepressants just been used to cover the damage done by benzodiazepines?
  12. How many patients have been switched from one drug of dependence to another drug of dependence?

Benzodiazepines were first prescribed in the 1960s.  Their dependency forming and brain damaging properties have been known for decades, TV documentaries have been made, victims have campaigned and where are we now?  People are still suffering horrendously and needlessly.  A class action was thrown out of court in the 1990s. It was costing too much in legal aid.  GPs responded by increasing prescribing rates.  How astonishing.  An All Party Parliamentary Group was established but its recommendations were ignored by the Department of Health.  There is extensive documentary evidence of all this historical activity, gathered by committed individuals into a single website.

Articles in the media from 1985 to the present day

http://www.benzo.org.uk/media.htm

And personal accounts

http://www.benzo.org.uk/stories.htm

TV Documentaries

ITV, The Cook Report, 1988 – Ada vs Ativan

https://www.youtube.com/watch?v=OfflAZbh-V4&feature=youtu.be

BBC Brass Tacks, Dangers of Benzodiazepines, 1987, Parts 1 and 2. 

https://www.youtube.com/watch?v=q2iZQ9tVSAU

https://www.youtube.com/watch?v=OWHKri71qaE&t=26s

BBC Panorama, 2001 – The Tranquiliser Trap

http://www.dailymotion.com/video/x2vhop3

Speech by Caroline Moore, solicitor, House of Commons, 2002.  Caroline represented Ray Nimmo and Luke Montagu.  Both were successful and were awarded compensation. 

http://www.benzo.org.uk/cam1.htm

Benzodiazepines linked to brain damage 30 years ago – Independent, 7 November 2010

http://www.independent.co.uk/life-style/health-and-families/health-news/drugs-linked-to-brain-damage-30-years-ago-2127504.html

The Benzodiazepine Medical Disaster, by Shane Kenny, former radio presenter, damaged by benzodiazepines.  Featuring Prof Sir Malcolm Lader and Prof Heather Ashton, leading UK experts on benzodiazepines. 

https://vimeo.com/188181193

BBC Radio 4 – Face the Facts – Prescribed Addiction – 2011

Former Chair of Council of the RCGP describes the fact that it has taken decades to reduced benzodiazepine prescribing as a “success”.  She also disputes that patient cannot get off these drugs and that benzodiazepine withdrawal and its effects can last a very long time.

http://www.bbc.co.uk/programmes/b012wxxw

Media articles

And more recent media exposure by some very brave individuals, willing to tell their stories to the press and television.

ITV News – patients call for a public inquiry, 3 January 2018

http://www.itv.com/news/calendar/2018-01-03/yorkshire-patients-call-for-a-inquiry-into-the-prescription-of-addictive-legal-drugs/

Neil Evans, Jen Hider, Barbara Bell, Catherine Marshall, all driven to the brink of suicide, Daily Mail, 26 September 2017

http://www.dailymail.co.uk/health/article-4919048/The-nurse-driven-brink-suicide-anti-depressants.html

Shane Kenny, driven to the brink of suicide, The Times, 9 October 2016

https://www.thetimes.co.uk/article/tranquillisers-drove-me-to-the-brink-of-suicide-z23npq76r

Fiona French “The hell of my prescription drug withdrawal”  BBC News, 

29 June 2017

http://www.bbc.co.uk/news/uk-scotland-40442178

Personal Account, Sonja Styblo, 11 May 2017

https://www.madinamerica.com/2017/05/informed-consent-benzodiazepines-personal-account/

An Open Letter: Ativan stole my only remission from terminal cancer. Lori Jean Heckenkamp, deceased.  published 5 June 2017

https://www.benzoinfo.com/single-post/2017/06/04/An-Open-Letter-Ativan-Stole-My-Only-Remission-From-Terminal-Cancer

Fiona French, prescribed benzodiazepines for 40 years, 3.5 years in bed due to withdrawal.  Daily Mail, 22 May 2017. 

http://www.dailymail.co.uk/health/article-4531548/Betrayed-doctors-turned-DRUG-ADDICTS.html

Pamela Wilson robbed of 35 years of her life.   Daily Mail, 17 April 2017

http://www.dailymail.co.uk/health/article-4419540/Painkillers-sore-neck-robbed-27-years.html

An Open Letter: Cardiologist and Cancer Survivor Speaks on the Dangers of Benzodiazepines  Dr Laura Huff, 15 October 2016

https://www.benzoinfo.com/single-post/2016/10/15/An-Open-Letter-Cardiologist-and-Cancer-Survivor-Speaks-Out-on-Dangers-of-Benzodiazepines-and-Her-Personal-Withdrawal-Story

Janet Waterton awarded £200,000 by her local NHS Trust, Claire Hanley attempted suicide more than once.  8 November 2016, Daily Mail

http://www.dailymail.co.uk/health/article-3915114/Why-250-000-lives-ruined-mother-s-little-helpers-Doctors-finally-admit-patients-hooked-tranquilisers.html

Luke Montagu, future Earl of Sandwich, awarded £1.35 million compensation for rapid withdrawal and mis-prescribing of benzodiazepine

http://cepuk.org/2015/07/18/rapid-withdrawal-misprescribing-benzodiazepine-leads-1-35m-settlement-luke-montagu-cep-co-founder/

Janet Marshall, Kettlethorpe, UK, successfully sued her GP surgery after being prescribed benzos for 22 years.  The drugs ruined her life just as they have ruined so many other lives.  

http://www.benzo.org.uk/amisc/we1.pdf

Sandra Mental, 40 years on benzodiazepines, robbed of her life

http://www.itv.com/news/calendar/2015-10-22/mum-speaks-about-22-year-battle-to-break-addiction-to-tranquillisers/

http://thebridgeproject.org.uk/news/a-voice-to-be-heard-by-sandra-minshull/

Clare Morgan, The Sunday Times, 2 October 2012

“These drugs took me to hell and back, and I lost everything, even my sanity.”

https://www.thetimes.co.uk/article/these-drugs-took-me-to-hell-and-back-and-i-lost-everything-even-my-sanity-l8lmkhxhn6l

Ray Nimmo, valium addict wins payout of £40,000 – landmark victory against GPs – The Guardian, 23 June 2002

https://www.theguardian.com/society/2002/jun/23/health.NHS

Baylissa Frederick, has counselled thousands of victims of benzodiazepines. 

http://cepuk.org/2014/03/19/video-baylissas-journey-clonazepam/

Ian Singleton, Bristol Tranquiliser Project, has also counselled thousands of  victims. 

http://cepuk.org/recovery-stories/

Geraldine Burns

http://www.benzosupport.org/sucess_stories.htm

 

In 2015, the British Medical Association published a report after gathering evidence from many stakeholders including victims of benzodiazepines.  It requested that the Department of Health set up a UK-wide helpline and specialist services for prescribed drug dependence.  The devolved administrations were also approached.

https://www.bma.org.uk/collective-voice/policy-and-research/public-and-population-health/prescribed-drugs-dependence-and-withdrawal

The current All Party Parliamentary Group on Prescribed Drug Dependence supports the BMA’s call for appropriate services.  Will it be ignored just as the All Party Parliamentary Group on Involuntary Tranquilliser Addiction was ignored?

http://prescribeddrug.org

The BMA and APPG-PDD have formally requested a Health Select Committee inquiry.  We, the victims, wish to see a full-scale public inquiry similar to the Hillsborough Disaster.  It is unknown how many victims there are or have been due to benzodiazepines.  We are kept hidden, behind closed doors, and although we strive for justice, it is very difficult when the victims are unwell and unable to mount a strategic and successful campaign.  It is also very difficult when prescribing doctors deny the damage that has been done and conceals it behind meaningless, descriptive labels which do not constitute a diagnosis of anything.

The UK Department of Health continues to argue that there is insufficient evidence of demand for such services.  Instead funds are concentrated on drug and alcohol addiction.  Surely this is a deliberate policy to divert attention from the irresponsible behaviour of our prescribing doctors.   We know that benzodiazepine withdrawal is much worse than heroin withdrawal.

News Report – Xanax – More Addictive Than Heroin

https://www.youtube.com/watch?v=LjpD41mMG8o&t=21s

When language is used to obscure the issue

Addiction and dependence are not synonymous.   Addiction services are totally inappropriate for patients dependent on prescription drugs.

http://w-bad.org/addiction-dependency/

https://www.benzoinfo.com/single-post/2017/01/27/Benzodiazepines-Why-the-term-addiction-must-go-The-term-addiction-is-pejorative-and-misleading-Iatrogenically-harmed-Not-addicted

And so research is now being conducted to satisfy the demands of the Department of Health.  Why is this necessary in 2017?  We, the victims, would contend there is ample evidence and if there isn’t why has no effort been made to gather it years ago?  In 2001, Panorama broadcast “The Tranquilliser Trap”.  It says at the beginning of the programme that they had to conduct their own research as there were no statistics available from the Dept of Health on numbers of patients taking benzodiazepines.  Strangely enough exactly the same argument is being put forward today.  It is curious how estimates of illegal drug addicts can be regularly made given the immense difficulties of tracking those individuals.  Patients’ GP records are readily available and easily accessible.

Long-term benzodiazepine and Z-drugs use in the UK: a survey of general practice, James Davies, Todd C Rae, Luke Montagu

First reliable, evidence-based estimate of patients prescribed benzodiazepines for more than one year.   Why has it taken decades to even attempt to estimate the scale of the problem. This study is likely to under-estimate the numbers given its research methods which are based on previous research by the Bridge Project, set up to support those affected.  The exclusion criteria used such as patients currently unwell would have reduced the estimated number considerably, we suspect.

http://bjgp.org/content/67/662/e609

2017  Prescribing patterns of dependence forming medicines – analysis using the Clinical Practice Research Database – National Centre for Social Research 

http://phrc.lshtm.ac.uk/project_2011-2019_014.html

Professor John Strang is cited as one of the co-investigators.  Questions were raised about Professor Strang’s involvement in producing a similar report in 2011.   Similar questions are being asked about the 2017 report.

http://www.independent.co.uk/life-style/health-and-families/health-news/professor-who-wrote-coalition-health-policy-was-paid-by-drugs-firm-2325928.html

2017 Prescribed Drug Withdrawal Survey – Initial Findings

It was left to the sufferers to circulate this online survey in the support groups.  This is of course a very cheap way of conducting a research study.  No attempt was made to cast the net wider to GP surgeries, for example.  We suspect that the Department of Health is simply using delaying tactics by requesting that more evidence of suffering be found.

http://cepuk.org/2017/09/20/2017-prescribed-drug-withdrawal-survey-initial-findings/

We are a group of very sick people.  Most of us have had our lives devastated by benzodiazepines.  Some of us have lost 40 years. Younger people are now suffering needlessly.   Our doctors ignore us, tell us our symptoms have nothing to do with the drugs.  They prescribe more drugs and make us even more sick.  It is a complete waste of human lives.  We are now driven to setting up petitions, contacting the media, telling our stories to the press and writing to the medical journals. Yet, the Department of Health continues to ignore us.

Petition to Health Select Committee, UK Government – Inquiry Needed.

https://www.change.org/p/health-select-committee-an-independent-inquiry-into-benzodiazepines

Petition to Scottish Parliament, Prescribed Drug Dependence.

http://www.parliament.scot/GettingInvolved/Petitions/PE01651

Petition to National Assembly for Wales – Prescribed Drug Dependence and Support. 

https://www.assembly.wales/en/gethome/e-petitions/Pages/petitiondetail.aspx?PetitionID=1235

We hear very little from the medical community but some brave doctors are willing to speak out. See e-letters for some victim responses.

Bad Medicine: The Medical Untouchables – GP, Dr Des Spence, Glasgow. 

http://bjgp.org/content/67/661/363

And some more responses.

http://bjgp.org/content/67/663/445.1

http://bjgp.org/content/67/663/444.3

Some academic research is now being published on patient’s experiences, but written by someone with personal experience of withdrawal.  Why is no one else interested?

Stories of Hell and Healing: Internet Users’ Construction of Benzodiazepine Distress and Withdrawal. Fixsen & Ridge 2017

http://journals.sagepub.com/doi/abs/10.1177/1049732317728053?journalCode=qhra

Some charities provide support but are overwhelmed by demand.

http://www.btpinfo.org.uk

http://bataid.org

In recent times, it has emerged that doctors seem to using the diagnostic label “Medically Unexplained Physical Symptoms” and such labels, all with a psychiatric bias.  GPs are being encouraged to use such labels and to remain “agnostic about aetiology”, astonishing advice indeed.  This subject is being widely discussed at medical conferences and in the medical literature.  Victims of benzodiazepines and other drugs of dependence have joined in the debate.  What is very interesting, is that no doctor has responded to us advising us that our assessment of the situation is misguided.

Medically Unexplained Physical Symptoms or Drug Side Effects /Withdrawal Symptoms?  GP View, 25 September 2017, Marion Brown  

Please also read comments to the article.

http://gpview.co.uk/update-managing-patients-with-medically-unexplained-symptoms/

And so it would seem that the UK Department of Health does not wish to provide services to help patients withdraw from benzodiazepines and other drugs of dependence.  It also seems that the medical profession is keen to cover up the neurological damage resulting from these drugs.

Please read our letters below and please help us to expose what is happening.  It is disgraceful and unforgivable.   It is a huge waste of NHS resources and a criminal waste of human lives. Thank you.

Compiled on behalf of those damaged by benzodiazepines

Claire Violet Hanley, campaigner, founder of Facebook Group, Prescribed Harm UK

Fiona French, campaigner, 40 years plus lost to benzodiazepines

Barry Haslam, veteran campaigner of 30 years plus, brain damage due to benzodiazepines

21 October 2017

 

 

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