Dr Gerada's uninformed comments on Radio 4's Face the
Facts regarding benzo addiction and withdrawal
John Perrott, July 31, 2011
Some of you may have already received my previous email regarding the Radio 4 programme "Face the Facts" entitled "Prescribed Addiction: The "scandal that has left up to 1.5 million people addicted to prescription drugs" which was broadcast last Wednesday and repeated today. If not you may listen to it on this link. A full transcript will be available shortly.
On the programme Dr Gerada, Chair of the Royal College of General Practitioners, made some very ignorant comments when presented with evidence of over-prescribing and withdrawal symptoms. When asked by John Waite about the severity of withdrawal symptoms Dr Gerada said that they were "overstated". For those of us who have experienced benzo withdrawal, especially a protracted and acute withdrawal, this statement was particularly lacking in concern and blatantly untrue. It reflected the tone of all her comments which were equally untrue and her contribution to the programme was spent entirely on defending her stance and that of the RCGP and its members.
I, and other victims of benzos, have emailed Dr Iona Heath, President of the RCGP, to complain about Dr Gerada's statement and I would ask you all to do the same and pass on this email to others involved, including withdrawal charities, victims and their families and ask them to complain as well. Dr Heath is hiding and has as yet not responded to any enquiries. She should not be allowed to ignore this problem and allow Dr. Gerada to trivialise addiction and withdrawal on national radio.
Dr Heath's email address is president@rcgp.org.uk.
As you will be aware from the All Party Group's website www.appgita.com we are continuing to keep the pressure up on Anne Milton. I ask you to help us with this by also emailing her at PublicHealth.Minister@dh.gsi.gov.uk about the recently published NAC/NTA reports which recommend practices contrary to the BNF guidelines e.g. abrupt 8-10 week withdrawals with a 6 month ceiling (analysis on the APPGITA site). Also, the main author Prof John Strang had an undeclared interest in the form of a consultancy to Genus who make lorazepam. This should invalidate the reports.
Ask Anne Milton what she plans to do now to help patients. The more people that lobby her the better.
Please send me any responses you get so we can co-ordinate our replies.
Finally, please share this email with anyone you know who has been affected and anyone you think may help.
Regards,
John Perrott
Email from John Perrott to Dr Iona Heath, President of the RCGP, July 28, 2011
Dear Dr Heath,
I wish to say firstly that I am extremely surprised in your lack of professional etiquette in failing to acknowledge or reply to previous correspondence about iatrogenic tranquilliser addiction. Should I not receive a reply to this email I will again have to refer it to my MP. I request a reply from you and not from Simon Ashmore, your Head of Communications. As you are aware Simon and Linda Harris, your Head of Substance Misuse Unit, requested and attended a meeting with me in Lancaster in March 2011. They both acknowledged that there was a problem and made promises which Simon sent to me in an email, a copy of which I sent to you; they then both broke contact with no reason and reneged on all the promises.
I hope you have listened to the Radio 4 programme "Face the Facts" entitled "The "scandal that has left up to 1.5 million people addicted to prescription drugs." If you have not, then this is a link.
I would like to point out that all the evidence presented to Dr Gerada in this programme, some provided by myself, was based on hard evidence and scientific fact and that conversely all the reponses given by Dr Gerada were anecdotal. I will take each of her main comments in turn.
She said:
"What we have seen over the past 20 years is a massive reduction in the prescribing of these medicines and a massive reduction in the amount of people who are actually addicted to them…..The number of prescriptions for benzodiazepines issued to patients over a long term basis for no good reason is certainly not increasing, if anything it is significantly decreasing". Dr Gerada describes this period as a "prescribing success story".
The reality is that the prescribing of these tranquillisers has increased as shown in prescribing statistics provided in answer to a Parliamentary Question by my MP, Eric Ollerenshaw.
The 2010/11 Department of Health Prescription Cost Analysis figures show increases in numbers of prescriptions for the following tranquillisers:
Diazepam up 96,300 lorazepam up 26,300 clonazepam up 9300 and zopiclone up 223,800 compared with the previous year.This gives a total increase for these four tranquillisers of 355,700 prescriptions.
In 1998 there were 3,989,300 prescriptions for diazepam alone compared with 5,148,000 in 2010/11 giving a massive increase of 29% over this 12 year period.
If this was "a prescribing success story" then the prescription numbers should be decreasing and not increasing. Also, Dr Gerada is not in a position to comment on national numbers addicted because, as the NAC/NTA reports stated, it has not been possible to ascertain a national figure for numbers addicted, so this statement is erroneous and wild speculation.
"GPs are sensibly prescribing" and it is "a prescribing success story" This is unsubstantiated opinion and again untrue. The NAC report on addiction to medicines states on Page 40 that an average of 50.1% of benzodiazepine prescriptions between 1990 and 2006 were for longer than the 2-4 week guidelines. These remained at over 30% last year as stated on the programme. Dr Gerada's reference to her own surgery bore no relation to the national situation.
Dr Gerada, with reference to withdrawal symptoms, said that they were overstated. I would refer her to the tranquilliser withdrawal charities who report crippling withdrawal symptoms persisting sometimes for years and in some cases long enough to represent permanent damage. In my own case I experienced over 40 symptoms over a period of 3 years and lost my ability to work. I am now 16 months without medication and still far from recovered but improved from when on the medication. This I endured, as many others have, with no GP support or even a basic understanding. Patients have committed suicide, lost homes, families and jobs. Her comments are ill-informed and an affront to all the people damaged by these drugs.
Dr Gerada went on further to say that "some patients may be on them for life" thus condemning people to a lifetime of addiction and in many cases a very limited one. This is unacceptable and particularly from a person in her position and only demonstrates her complete lack of understanding of the subject. Why should patients have to live a half life caused by over prescribing by your members? Withdrawal is hard but can be achieved if done in a correct and safe manner. Dr Gerada showed no interest in withdrawal whatsoever. If this is the RCGP's stance on this then you are letting down your patients as well as your members who need sensible information.
Dr Gerada's entire contribution was spent defending her own and the RCGP's position with no mention of care or concern for the patients. Josh Jarrett, an affected patient who contributed to the programme contacted you for help and I also wrote to you on his behalf. Neither of us have received a reply. This seems to be standard treatment by the RCGP.
Anne Milton, the Public Health Minister, described Dr Gerada's comments as "flying in the face of my experience and the evidence I have received".
The RCGP mission statement is "Committed to improving patient care, clinical standards and GP training."
The influential people and MPs on my circulation list will now be asking whether it should be rewritten as "condemning patients to a lifetime of crippling prescription drug addiction and denial of the truth."
Yours sincerely
John Perrott
Researcher for APPGITA
Reply from Dr Iona Heath, President, RCGP to John Perrott, August 1, 2011
Dear Mr Perrott
Thank you for writing.
This is a complex area of practice. My experience is that GPs are fully aware of the dangers of these drugs and work very hard to minimise their prescribing. The College will continue to support them in this endeavour.
Yours sincerely
Dr Iona Heath, President · Royal College of General Practitioners
Email from Barry Haslam to Dr Iona Heath, President RCGP, July 31, 2011
Dr Heath,
Please read the attachment re the truth on benzo poisoning drugs and then sack Dr Clare Gerada or publicly admonish her, for her boorish comments on Face the Facts.
She is not fit for purpose.
Sincerely,
Barry Haslam
Reply from Dr Iona Heath, President, RCGP to Barry Haslam, August 1, 2011
Dear Mr Haslam,
Thank you for writing.
This is a complex area of practice. My experience is that GPs are fully aware of the dangers of these drugs and work very hard to minimise their prescribing. The College will continue to support them in this endeavour.
Yours sincerely
Dr Iona Heath, President · Royal College of General Practitioners
Email from Josh Jarrett to Dr Iona Heath, President RCGP, July 31, 2011
Dear Dr Heath
I wish to complain in the strongest possible terms at the statements of Dr Gerada on the BBC 4 Face the Facts radio programme. I was astonished to hear what Dr Gerada said. I am a victim of 42 years standing and to say people come off benzodiazepines with little problem is a total fabrication. I feel like Dr Gerada had no understanding of the issues of withdrawal, and indeed painted an entirely misleading picture of the suffering attached to reduction and addiction.
I am at a loss to understand why Dr Gerada would make such statements and can only fear for my future if this is a cross section representation of how GPs view benzodiazepine addiction, and the awful withdrawals from the medication.
I sent an email out of desperation to you and had no reply, even though I made clear my desperation to you. I am shocked to think that the RCGP can take a laxed view on one of the most pressing issues facing the estimated 1.5 Million legally addicted benzodiazepine users in the UK today. What hope for us if Dr Gerada's views are the norm?
I am outraged. You deserted me when I called for your help and guidance, your profession gave me no choice when I was placed on this medication, nor does it give me a choice in my withdrawal. I will not stand by and be made to look like an illegal addict nor will I stand by and be treated as if my addiction is my fault.
I will also not stand by and allow remarks like Dr Gerada made on national radio, to go unchallenged. I look to you once more for a reply. I hope you will find the time to do me the courtesy of giving me one this time. I feel let down, betrayed by the very people I should be able to look to for comfort and help. I sincerely hope you will responded to my grave concerns with respect to the comments made by Dr Gerada, which are an affront to anyone suffering the horrendous addiction to benzodiazepines.
Yours sincerely
Josh Jarrett
Reply from Dr Iona Heath, President, RCGP to Josh Jarrett, August 1, 2011
Dear Mr Jarrett,
Thank you for writing.
This is a complex area of practice. My experience is that GPs are fully aware of the dangers of these drugs and work very hard to minimise their prescribing. The College will continue to support them in this endeavour.
Yours sincerely
Dr Iona Heath, President · Royal College of General Practitioners
Email from Ray Nimmo to Dr Iona Heath, President, RCGP, August 1, 2011
Dear Dr Heath,
I listened to your Dr Clare Gerada's defence of benzodiazepines on BBC Radio 4's Face the Facts and although alarmed and deeply concerned by her crass ignorance of the issue and her denial of palpable facts I must say I am not surprised by her irresponsible comments. I have encountered the same cranio-rectal attitude in GPs for the last thirteen years.
That some people - according to Dr Gerada - need to stay on benzos for life flies in the face of all the advice given to GPs. In 1988 the then UK Committee on Safety of Medicines wrote to all doctors advising them to prescribe benzodiazepines for no longer than "2-4 weeks only". In 2004 the Chief Medical Officer reiterated this warning of very short-term use in a letter to doctors. So why are 1.5 million people still being prescribed benzodiazepines long-term in the UK? One doctor once said to me: "They are only Guidelines. Doctors are not compelled to follow them. Personally I rely on my clinical judgment when I prescribe benzos. Patients seem to like them." Other doctors - perhaps deliberately - misinterpret the Guidelines. They think that it's OK to continue prescribing benzos provided they see the patient at least every month!
Do you think that these guidelines are a trivial matter? Has it not been known for many years that not only is this whole class of drugs highly addictive but also has the potential for permanent ie irreversible harm?
In the past 13 years I have presented my unrelenting pain to a number of medical practitioners - both GPs and specialists. For the most part I have been greeted with disbelief, denial and, on a couple of occasions, derision. I have been unable to achieve any kind of acknowledgement or recognition let alone any sort of therapeutic treatment. I have been told I am just unfortunate and that I should learn to live with it! Conversations with GPs over the last 13 years have usually run along these lines:
GP: I do not believe that you are suffering from benzodiazepine withdrawal symptoms thirteen years after you stopped taking the drugs.
Me: Well no, neither do I. I do however believe that they symptoms I have described to you are the result of long-term benzodiazepine therapy and that I have sustained permanent injury to my central nervous system. The symptoms I have described to you (tinnitus, paraesthesiae, formications, muscular spasms, head/jaw and facial pain) are evidence of this damage.
GP: I'm not convinced. You are the only person I have ever seen who has complained of damage caused by benzos. Whatever you have must be something else.
Me: I am not surprised by your reply at all. Firstly, the majority of people exposed long-term to benzodiazepine therapy are either still on the drugs or died while still on them. You are therefore unlikely to have encountered any of the very few who have managed to come off the drugs. In fact, the few who do are very often persuaded by their doctors that they are suffering from something else and, more often than not, are subject to misdiagnosis and receive inappropriate treatment.
In 1984 I was prescribed a class of drugs known as Benzodiazepine Tranquillisers by a GP initially as muscle-relaxants for abdominal pain. I was subsequently told I needed to take this medication for the rest of my life because I developed symptoms of anxiety and later depression. For over 14 years I was unwittingly addicted to Valium/diazepam. In 1986 I had to give up work as a director of a successful company because I could no longer cope with life let alone work.
I was held trapped by this drug until the summer of 1998 when a doctor, a relatively new member of my wife's Church, spotted my troubles and offered to help me if I would see him as a patient. He told me that I was suffering from Valium addiction and Valium-induced depression. He had precious little experience of benzo withdrawal and brought me off the drugs somewhat rapidly. Even now at 13 years after I came off the drugs I still suffer from a wide range of debilitating symptoms caused by the misprescription of the drug and permanent damage to my nervous system. I will never recover from the hell I have been subjected to by a NHS doctor. Not only am I in intense physical pain I have been robbed of any kind of normal life. Successive governments and medical bodies have consistently failed to address the benzodiazepine issue. For many years now I have sought to earn some kind of recognition and justice not only for myself but also for the countless millions of other people whose lives have been blighted by benzodiazepines. Since 2000 I have run a website (www.benzo.org.uk) for fellow sufferers providing help, information and news.
Please don't tell me that this is a complex area of practice and that your experience is that GPs are fully aware of the dangers blah-blah. I have immersed myself in benzo issues for the last 13 years and have seen the problem repeatedly kicked into the long grass. I hold you and your members entirely responsible for my insoluble pain and for 50 years of irresponsible prescribing practice.
It really is time for you to get your head out of the sand and face up to the immeasurable harm you have caused. Believe me, I and the countless millions of victims of these drugs will continue to haunt you if you persist in ignoring us.
Sincerely,
Ray Nimmo - owner of www.benzo.org.uk
Response from Josh Jarrett to Dr Iona Heath, President RCGP, August 1, 2011
Dear Dr Heath
Thank you for your short reply. To say I am disappointed with your response, would be to make an understatement look obvious. I am devastated. I had hoped to have had your professional guidance, on the complaint about Dr Gerada's outrageous comments on the BBC Face the Facts radio 4 programme.
The problems of Benzodiazepine Addiction are not going to go away, and with one of the most conceited views I have ever heard expressed by a professional Doctor, such as Dr Gerada I truly do fear for my future care. If you had, god forbid, become addicted to a medication not of your choice or choosing, and had then sat and listened to a condescending Doctor tell a very large audience nationwide that your problems were not really a problem at all, and that the withdrawals from your medication were not really a problem either, can you say with full honesty you would have sat there and not been moved to disgust?
I further ask you to be clear please. You say the College will continue to work hard to support GPs in their endeavours with regard to the dangers of these drugs (Benzodiazepines), does this include safe withdrawal, and working with a patient and not dictating?
Does this include reprimanding a GP, who without so much as my medical notes in front of them, says "reduce or find another practice"? Your profession made me an addict, I was a child. I would suggest you look very close to home before treating myself, and many others currently addicted to Benzodiazepines, as some kind of illegal drug user/abuser. I am at my wits end with the stigma attached by your profession toward people like me on Benzodiazepines, which your profession handed to me.
I can only conclude from Dr Gerada's comments about withdrawal symptoms, that all of us on Benzodiazepines are liars. We colluded to invent horrific stories of withdrawals to what end? And are we all such liars that as a population estimated to be currently at 1.5 million, we as an unique group of "users" (victims), suffer from mass hysteria.
If I cannot turn to you Dr Heath, the President of the RCGP, who can I turn to? Recent events in the press clearly show that there is a change in the way people will lay down an accept injustice, and I am clear on my views of Dr Gerada, her comments were the biggest injustice since people like me were placed on a medication that has dominated my life.
That I have any trust in a GP is a miracle at all, but the fact I am turning to you for help and guidance is a show of trust beyond belief, I beg you once more, please for the sake of justice, look into the fabrications spoken by a Doctor who dismissed 1.5 million human beings.
Yours sincerely
Josh Jarrett
Email from Les Bland (Canada) to Dr Iona Heath, President RCGP, August 2, 2011
Dear Dr. Heath,
I personally listened to Face the Facts on Radio 4 regarding benzodiazepine addiction and withdrawal. We are fighting the same battle here in Canada and also watching the UK's progress. It honestly is life changing and help is desperately needed worldwide. Please do what is right and forget about the consequences of what has happened or might. Innocent people really are suffering and most can't even find the health or strength to speak up.
I can personally speak to this issue through my own personal experience with these poisons, just as all the other victims worldwide are and have done for years.The only true teacher or possible way for you or anyone to understand this monster is through personal use. Therefore my question to all of you who have never been on this drug for an extended period, is simply. Why is no one listening to the folks who have and are suffering? How can you possibly understand and have an opinion when you do not feel what we feel? How can anyone who has never actually taken these chemicals down play the dangers and severity of the health problems associated with them?
I have spent the last 22 months of my life getting this poison out of my system and trying to recover after 35 years of hell through prescribed addiction and consider myself an expert by personally going through the experience. It is clearly obvious that Dr. Gerada along with other medical professionals as well as government officials are truly not understanding or simply avoiding the real truth. I ask that Dr. Gerada, a few other medical professionals and a couple gov't officials try a free sample for a year and then stop. At that time and only then will they be truly educated and able to comment. I am willing to take that risk are you?
PS: Please do not send your usual blanket two liner response. It only validates your lack of caring and not wanting to believe the victims which can only be viewed as horrible behavior for a medical professional in your position. What would you do if this happened to your child?
Les Bland
Response from Professor Heather Ashton to Dr Iona Heath, President RCGP, August 2, 2011
Dear Dr. Heath,
On the recent radio programme "Face the Facts" on BBC Radio 4, Dr. Clare Gerada was blatantly wrong when she claimed that withdrawal effects from long-term benzodiazepine use are overstated. She cannot have had any experience of long-term, prescribed benzodiazepine users or be familiar with the copious literature on this subject which has been well documented since the early 1980s, by Lader, Tyrer, Ashton and many others (see references below).
In agreement with the previous literature, I wrote in a 1984 paper in the British Medical Journal "These findings show very clearly that benzodiazepine withdrawal is a severe illness. The patients were usually frightened, often in intense pain and genuinely prostrated. The severity and duration of the illness are easily underestimated by medical and nursing staff, who tend to dismiss the symptoms as 'neurotic'. In fact, through no fault of their own, the patients suffer considerable physical as well as mental distress. They greatly value close medical contact and support, both in the early withdrawal stages and for a prolonged follow-up period."
My own experience with over 300 closely supervised patients in my Benzodiazepine Withdrawal Clinic from 1982 to 1994 confirms the above statement, as well as personal correspondence with over 1000 patients world-wide since that time. Clearly Dr. Gerada, who is more concerned with polydrug abusers, is not acquainted with this population of long-term prescribed benzodiazepine users who do not take other drugs.
The main features of withdrawal symptoms in these users are listed in the BMJ paper and the Ashton Manual (www.benzo.org.uk). They include:
Severe anxiety, panics, agoraphobia, depersonalisationInsomnia
Muscle twitches, numbness, pain
Palpitations
Sensory hypersensitivity and sensory distortions/hallucinations
Gastrointestinal symptoms
Depression
The symptoms have often resulted in expensive hospital investigations for cardiovascular, gastrointestinal, neurological and psychiatric disorders. Several patients have committed suicide and rapid withdrawal has resulted in life-threatening epileptic fits and psychosis.
Withdrawal effects have not been understated and Dr. Gerada is guilty of ignorant misrepresentation. What she said in the radio programme was a travesty of the truth and she should withdraw her statement.
In the radio programme Professor Lader was asked why the Department of Health had not taken action on this problem as it is admitted that there are over one million long-term prescribed benzodiazepine users in the UK who receive little help in withdrawal. His depressing reply was that
(1) the DOH is influenced by the powerful drug companies who would have to pay out millions of pounds/dollars in compensation if the health risks of long-term benzodiazepine use were exposed and (2) general practitioners are afraid of litigation from patients who have been prescribed long-term benzodiazepines.
This is a corrupt state of affairs and the Department of Health must think again. They need to set up dedicated withdrawal clinics all over the country, separate from clinics for withdrawal from illegal drugs, for inadvertently-dependent prescribed users. They also need to provide training for more clinical psychologists, counsellors and doctors on benzodiazepine problems. Quick access to non-drug therapies should be rapidly available for the prevention of long-term prescriptions. Other requirements are stated in my reply to the report of the National Addiction Centre which has been sent to the Minister of Health Anne Milton.
References
Hallström C, Lader M. Benzodiazepine withdrawal phenomena. Int. Pharmacopsychiatry 1981: 16; 235-44.
Tyer P, Owen R, Dawling S. Gradual withdrawal of diazepam after long-term therapy. Lancet 1983: I; 1402-6.
Ashton H. Benzodiazepine withdrawal: an unfinished story. Brit Med J 1984: 288; 1135-40.
Ashton H. Toxicity and adverse consequences of benzodiazepine use. Psychiatric Annals 1995; 25; 158-65.
Ashton H. Protracted withdrawal from benzodiazepines: the post-withdrawal syndrome. Psychiatric Annals 1995: 25; 174-9.
Yours sincerely,
Heather Ashton
Emeritus Professor of Clinical Psychopharmacology,
Academic Psychiatry,
Newcastle General Hospital,
Westgate Road,
Newcastle upon Tyne NE4 6BE
Response from John Perrott to Dr Iona Heath, President of the RCGP, August 2, 2011
Dear Dr Heath,
I see that you are cynically just sending the same two line dismissive response to all the patients who are contacting you asking for help and expressing their outrage at Dr Gerada's uninformed comments on "Face the Facts". I remind you that these patients have been damaged, some permanently, by your members ignoring the BNF guidelines. These guidelines state that these drugs should only be prescribed for 2-4 weeks yet according to the NAC report, an average of 50.1% of prescriptions between 1990 and 2006 were outside these guidelines, a fact that you conveniently ignored along with all the other evidence provided. Over 30% of tranquilliser scripts are still outside the guidelines.
Also, your members are enforcing abrupt withdrawals, again contrary to the guidelines, as in the case of Josh Jarrett, another patient whose correspondence you have ignored.
Also, prescriptions for tranquillisers have increased, especially diazepam, lorazepam, clonazepam and zopiclone - diazepam scripts have increased 29% over a decade - again you have ignored all these facts as well.
This is the opposite of a "prescribing success story" - it is a prescribing disaster story.
Also, you did not explain why Simon Ashmore, your Head of PR and Linda Harris, your Head of SMU, broke contact with me after our meeting and broke all the promises they made in an email.
All the evidence of your political posturing and denial is now on the All Party Group's website and on benzo.org.uk so that people can see the RCGP for what it truly is. The press is starting a campaign, Anne Milton has criticised Dr Gerada on national radio.
Do you really think that this is all just going to go away?
We asked for help from the RCGP and you just ignore everyone.
You also failed to address Dr Gerada's appalling comments on "Face the Facts". Considering her specialist area is drug addiction, all she has shown is a staggering level of ignorance on the subject, and worse still, she is responsible for GP training.
These are the "overstated" symptoms I endured through withdrawal for 3 years:
Constant sleep disturbances including persistent nightmares, waking in terror early every morning, feeling frightened and terrified all the time, feeling I was controlling my body like it was not part of me like operating machinery, loud constant tinnitus, extreme light sensitivity and a perception of colours changing, feeling that everything including was unreal or dream like, audio distortions like being in an echo chamber or like listening through cotton wool, hot and cold flushes, crushing headaches like someone is squeezing your brain really hard, a tight band round head, pressure in the head like it will explode, visual distortions like the ground and surroundings moving like liquid, breathlessness, intrusive unwanted thoughts, retching and nausea, muscle aches, cramps, heavy limbs, burning sensations in muscles, chronic fatigue, involuntary weeping, agoraphobia and claustrophobia, panic attacks and palpitations, constant agitation, rage and anger with bouts of screaming obscenities, loss of appetite, dizziness and loss of balance, bloated stomach, frequent urination, blurred vision, no concentration, confusion, inability to perform simple tasks or plan things, comprehension problems, spontaneous itching feelings all over body, feeling of complete hopelessness, dry mouth and metallic taste, restless legs and muscle twitches, emotional blunting or the inability to feel, flu like symptoms with sore tight throat, jelly legs feeling as if they will collapse under you, short term memory loss, unfounded thoughts that something is going to happen, hypersensitivity to touch, loss of balance and finally suicidal thoughts caused by all the above.
These are all NEW symptoms CAUSED by benzodiazepines. This is what your members have done to people.
These return in "waves" and are followed by "windows of normality". Anybody with a basic knowledge of benzos knows this. Doctors completely fail to understand benzo withdrawal and they will even less since Dr Gerada's comments.
If it had not been for the withdrawal charities and books written by former prescription tranquilliser addicts I do not know where I would be now.
I have just circulated Professor Heather Ashton's letter to you. She is a recognised world expert on benzos and how to withdraw safely. Are you going to send her a two line response as well? Evidence and recognition of a withdrawal syndrome was known in the 1980s - don't you people ever read anything?? It is not complex practice - it is simple. READ THE ASHTON MANUAL AND THEN PUT IT INTO PRACTICE.
Please do not think for one minute that by burying your head in the sand that this is magically going to de-escalate. There is now a national campaign against Dr Gerada and you as well by association. Your arrogant dismissal of people in abject misery caused by your members is now of national interest.
John Perrott
Email from Jim Dobbin MP to Dr Iona Heath, President RCGP, August 2, 2011
Dear Dr Heath,
Dr Clare Gerada, Chair of the RCGP, was interviewed on BBC Radio 4 on 27th July. I am Chair of the All Party Parliamentary Group on Involuntary Tranquilliser Addiction (APPGITA) and I would like to complain to you about the inappropriate comments Dr Gerada made on the subject of tranquillisers and tranquilliser addiction. In my view her comments were irresponsible and will encourage further negligent prescribing by your members. Dr Gerada ignored BNF prescribing guidelines and disregarded facts and evidence provided by the interviewer in favour of her own anecdotal evidence. It is unacceptable for patients to be condemned by Dr Gerada to a lifetime of drug addiction. I agree with Professor Ashton that Dr Gerada should withdraw her statement.
In the same programme the Public Health Minister Anne Milton MP took issue with Dr Gerada and in doing so became the first Health Minister to publicly acknowledge prescribed tranquilliser addiction. Unfortunately Anne Milton was less sure when asked what action the Department of Health intended to take. The APPGITA urges the Department of Health to discard the discredited advice it is currently following and adopt the APPGITA's recommendations. The first of these is the establishment of specialised tranquilliser withdrawal clinics based on the existing successful withdrawal charities.
Jim Dobbin MP
Chair, All Party Parliamentary Group on Involuntary Tranquilliser Addiction
Email from Melanie Davis, Mind in Camden to Dr Iona Heath, President RCGP, August 2, 2011
To who it may concern
I write to express my disappointment at Dr Gerada's comments regarding benzodiazepines, on the recent 'Face the Facts Programme'. I do not feel that Dr Gerada's comments were accurate or supportive of those who take this medication.
Dependency to prescription medicine is a serious issue and our service seeks to support GPs to address this issue appropriately. I am the manager of a specialised Benzodiazepine project – Mind in Camden, Minor Tranquilliser Project - which has been operational since 1988. We are Camden and Islington PCT and part NHS funded and see clients from Camden and Islington. I have been the manager of this service for 20 years. During that time, I have dealt with hundreds of clients who ingest minor tranquillisers and have attempted withdrawal from them.
We are user led, believe withdrawal is best encouraged rather than enforced and in our considerable experience done at the users own pace. Our aim is to help clients make an informed choice about whether to stay on, stabilise, reduce or withdraw entirely from Benzodiazepines and drugs with similar effects. In the vast majority of cases, local GPs accept our guidance, when we advocate for patients who attend our service. Difficulties arise when GPs try and withdraw clients too quickly and in some cases against the patient's wishes. Ultimately we are not a prescribing service and so hope that our joint working with GPs will provide a way forward for our clients. Without the support of a project like ours, it can effectively be a lottery as to whether a patient gets the appropriate treatment, in relation to withdrawal from minor tranquillisers. Occasionally a GP will not be willing to follow our suggestions and so it is vitally important that there are clear guidelines that we can refer practitioners to.
British National Formulary guidance makes it clear that use of these drugs is indicated for the short-term relief of severe anxiety and that long-term use should be avoided due to the risk of withdrawal symptoms. No doubt Dr Gerada and others are aware of this. It may be the case that this is borne in mind when prescribing this medication to a patient for the first time. However, for long term users (we have many clients who use our service taking this compound for over 20 years) their situation is very different than a patient who has only taken this medication for the recommended time period. Coming off this medication is very likely to be a lengthy and highly difficult process for the long term user and their concerns should not be marginalised, minimised or denied when they report symptoms to their GP.
Whist our clients are largely involuntary addicted, it is important to note that our service does see some clients who have used class A drugs in combination with benzodiazepines. In every case, in my twenty years experience, they have expressed to me that it was harder to come off their benzodiazepines than heroin. A fact that Dr Gerada explicitly denies. Obviously no one would want to underestimate the difficulties associated with heroin use but all the medical literature clearly supports the view that benzos are harder to withdraw from than heroin. This is because the withdrawal symptoms are more protracted and varied. I also note that there are very few dedicated clinics for benzodiazepine users, ours being the only one in London that I am aware of. So there is also a lack of help for those who are addicted to prescribed substances and no pathway to an option to attend rehab.
The BNF contains clear information on managing those patients who may have developed withdrawal symptoms and advocates a slowly tapered withdrawal. The NAC report stated that the optimal duration of withdrawal is not established in the published literature, but that the timeframe for withdrawal should be within 6 months for most patients and it highlights that there should be allowance for flexibility for slowing down if the withdrawal symptoms become too disturbing. In the vast majority of cases, I have found that our long term users cannot withdraw at this rate, not alone any faster and that tapering is best done slowly and at the clients own pace.
Currently Dr Chris Ford, who expresses a sympathetic and informed view of the problems associated with benzodiazepine use, is working on a consultation paper concerning prescribing in general practice. I have offered input to this as it is vitally important that the users of benzodiazepines are given the opportunity to be heard. Although I am not an ex tranquilliser user I am able to advocate on my clients behalf.
Information from the NTA report suggests that the cases reported on the National Drug Treatment Monitoring System have a mean withdrawal time of about a year, indicating that most clinicians are exercising their clinical judgement and managing longer tapered withdrawal periods for those who need it. However, this information will primarily be compiled from the cohort of poly drug users. Our service did report to the NTA for a couple of years which would have included those who were involuntarily addicted from prescribed drug use.
I would be very happy to do a presentation to GPs or write an article for distribution, that would help raise awareness of the issues that benzodiazepine users face, both when taking and trying to come off these pills. As it appears from her comments, Dr Gerada is unaware of the very real difficulties people experience when taking this medication and particularly when they try to withdraw. I am concerned that other doctors may be labouring under the same misapprehension.
Kind regards
Melanie Davis
Mind in Camden
Minor Tranquilliser Service Manager
0207 241 8980
Email from Josh Jarrett to Anne Milton MP, Public Health Minister, August 2, 2011
Dear Ms Milton
I want to say thank you for recognising the plight of the estimated 1.5 million people addicted to Benzodiazepines on BBC Radio's Face the Facts programme. I will not lie, I cried when I heard you say "there has been some denial of the problem" and that you are "certainly not in denial now"
For the first time in 42 years of being addicted, I felt a huge weight lift from my shoulders to hear your words, and your words have given me some hope, and for that I want to thank you. I also want to thank you for not agreeing with Dr Gerada, whose comments were an affront to any human being suffering the very real and very horrific withdrawal effects of a Benzodiazepine.
I can assure you the help we all seek is not out there. We are left to roam alone in almost all cases, and apart from a few charity groups, such as Barry Haslam's and Camden MIND's support group, I have no idea where we can turn for help.
I sent an email to Barry Haslam who I found on the internet, as there was no other help available to me, aside from the Samaritans, who whilst invaluable as a voice at the end of a phone when in crisis, are not expert at giving advice on Benzodiazepines. Camden MIND are currently helping me to address my addiction, as my GP made dangerous decisions on my behalf, and did not include me in that. The new GP said "reduce or find another practice" and done this without my medical notes in front of them, as they had not yet been forwarded from my previous GP.
My own experience of this type of discrimination from the medical profession is not in any way unique, and again, my experience holds a persuasive argument for dedicated Benzodiazepine Centres where I and others, may receive the professional help we all so rightly deserve, for an addiction that was not of our choice or making.
Camden MIND have intervened on my behalf to stop my new GP causing me significant harm from the way in which the GP was dealing with my 42 year addiction. Una Corbett of BAT (Battle Against Tranquillisers) gave me the contact details for Camden MIND, I had no idea they existed. My new GP offered me no help, and never mentioned Camden MIND.
I am so desperate for help, as are many others. We all stand in a queue waiting for help Ms Milton, please can you offer myself and all the other desperate people some real hope? I was an 8 year old child, I was addicted before my 9th birthday, I was withdrawing throughout my childhood, teen years an adult life, and being told by Doctors, "there is nothing wrong with you" and my dose was put up.
All I want is real help, and to be accepted as an involuntary user, not an illegal drug addict to be blamed for my addiction. I have lost all but the first 8 years of my entire life Ms Milton, who on earth can blame me for being angry, and feeling isolated when GPs blame Benzodiazepine addiction on the patient (me) - they did this to me.
Please Ms Milton, will you help me and all the others? I implore you as a fellow human being, I don't want to be left out to dry this time, I have been denied recognition of my symptoms by the very profession that got me addicted. How can Dr Gerada justify her abuse of words on this subject? I beg you to distance yourself from her complacency and help all of us waiting right now for a lifeline from the DoH, I use that word (lifeline) in its truest form, for even as I type, some lives will become a statistic on a slab from suicide due to the suffering from benzodiazepine addiction, and denial of its seriously life changing effects.
I don't want to be one of those statistics Ms Milton, I want to live.
Yours sincerely
Josh Jarrett
Email from Jennifer Stone to Anne Milton MP, Public Health Minister, August 2, 2011
Dear Anne Milton MP,
I have emailed a few times about benzos and the effects they have on the addicts and ex addicts of these evil legally prescribed drugs. I have been keeping up with the news on benzos. Can you please tell me what action you are going to take to help addicts and ex addicts whose lives have been ruined by these drugs? Thirteen and a half years on benzos just because I passed out once then cold turkeyed off, all due to a doctor who I trusted and because of her and the evil benzos my life has been ruined.
Yours sincerely
Jennifer Stone
Email from WK to Dr Iona Heath, President RCGP, August 2, 2011
Dear Dr Heath
I wish to complain in the strongest possible terms at the statements of Dr Gerada on the BBC 4 Face the Facts radio programme. I was appalled to hear what Dr Gerada said. I am a victim here, I went from having panic attacks to being left on these Benzos for months and now I am addicted. To say people come off benzodiazepines with little problem is absolutely disgusting. Dr Gerada has no understanding of the issues of withdrawal. If she really feels that it can be that easy, then maybe she should be a guinea pig and try taking them, see if she can come off them in a matter of weeks, with little problems.
The doctors did this to me back in March, they told me to reduce my tablets over a couple of weeks, I ended up being totally suicidal and having to be hospitalised. I have totally lost my life at the moment and I won't get it back for a very long time. I am deeply hurt that doctors can do this to us. I really do not trust any doctor, I am scared of them now. There is no support at all, I have had to search for help myself because Dr Gerada does not believe that people can be this sick through withdrawing. If heroin addicts are saying these are harder to come off then surely that tells you something.
I could have died this year. I am so glad that my girlfriend started to research on the internet and found out why I was so suicidal and having convulsions. Doctors would just keep giving more and more medication because they are not educated.
Just to write this email I am crying because I know that this could have all been avoided.
Please help us.
Regards
W K
Email from Jennifer Stone to Dr Iona Heath, President RCGP, August 2, 2011
Dear Dr Heath,
With regard to the comments made by Dr Gerada on Face the Facts, I was prescribed Benzos in 1988 because I passed out once. I was going through divorce and my son had broken his back. It was quite a lot to cope with but I was dealing with it. My doctor said '"You are overdoing it. Take this pill and you will feel better." I only went to see her as I thought I might be anaemic. 2001 I was cold turkeyed off them by another GP who told me I should never have been on them for more than 2-4 weeks. Most of them were repeat prescriptions. It was pure hell coming off them but I am glad I did. These evil pills ruined my life, and as for Dr Gerada's comment that withdrawal symptoms are overstated, she does not know what benzos addicts and ex addicts go through. If she did no way on this earth would she have made such a ridiculous comment. The nightmare coming off, weeks not sleeping, not knowing who you are, leg jerks and so many more withdrawal symptoms. I have been off them for 10 years, and no, the symptoms of benzos do not go away. Still bad leg jerks, days when my head is just not right , but at least I know now when my brain is not functioning properly, so I do most days have a normal functioning brain - a bit different from when I was a benzos addict. I have days when I feel I can't go places because of stomach problems, tinnitus and more. It's only a person who has experienced anything relevant to what they are talking about can really comment truthfully on a subject... and not talk a load of c**p.
Yours sincerely
Jennifer Stone
Email from Lee McCabe (Vancouver, Canada) to Anne Milton MP, Public Health Minister, August 2, 2011
Dear Anne Milton,
I am writing you regarding the recently published NAC/NTA reports which recommend practices contrary to the BNF guidelines e.g. abrupt 8-10 week withdrawals with a 6 month ceiling (analysis on the APPGITA site).
The Ashton Manual even says the taper should be controlled by the patient as 8-10 weeks is a rapid taper therefore the patient will then suffer the same symptoms as a detox or cold turkey as that is not enough time for the GABA receptor site that is downregulated to adjust to the discontinuation of the drug.
A rapid taper will do the same thing as a detox or cold turkey. As will a taper over months as it can still be too short.
This then voids the 6 month ceiling as it is not a "time based" healing process in the brain with the slow discontinuation of the drug. That is still a short time with benzodiazepine withdrawal as the drug removal faster than the brain can handle is proven to make symptoms intolerable and severe for the patient and the foundation of finding a stabilizing spot to strengthen to taper with less symptoms as possible, has been relinquished by the prescriber.
And the patient suffers the consequences.
Here is the reference from the Ashton Manual informing prescribers to let the patient, manage the taper accordingly to then manage their own symptoms.
From this link. 1/3 of the way down the page:
"BEFORE STARTING BENZODIAZEPINE WITHDRAWAL
Once you have made up your mind to withdraw, there are some steps to take before you start (...)
Your doctor's agreement and co-operation is necessary since he/she will be prescribing the medication. Many doctors are uncertain how to manage benzodiazepine withdrawal and hesitate to undertake it. But you can reassure your doctor that you intend to be in charge of your own program and will proceed at whatever pace you find comfortable, although you may value his advice from time to time. It is important for you to be in control of your own schedule. Do not let your doctor impose a deadline. Leave yourself free to "proceed as the way openeth", as the Quakers say."
As well, hopefully because the main author Prof John Strang had an undeclared interest in the form of a consultancy to Genus who make lorazepam. It will invalidate the reports.
I am an ex-victim of tranquilizer addiction from negligent prescribing, and have head pressure, eye pressure, neurological injury, central nervous system injury throughout my face, head, eye, mouth and ears as a result of not knowing I could slow taper and having to learn the truths on the internet.
These symptoms are chronic sec by sec daily after 21 months and I am still painfully enduring.
My symptoms are what these stringent taper guidelines are setting the patient up for.
Regards,
Lee McCabe
Vancouver, B.C. Canada
Email from Mike Hodkinson to Dr Iona Heath, President RCGP, August 3, 2011
Dear Dr Heath,
I suspect that you have received many complaints over the comments that seem to trivialize the suffering that most benzodiazepine withdrawal victims endure, I know it is incredibly difficult for someone who has not witnessed or endured for themselves the life changing impact that benzodiazepines cause, it is incredibly difficult for those of us who have had to endure what can only be described as a sheer living hell, being knocked back to just basically existing because of the multitude of debilitating symptoms that many endure for years leading to what I would describe as a half life existence. My family witnessed this prolonged nightmare and described it as the worst prolonged suffering they had ever seen a person endure. I was prescribed high dose Clonazepam for 2 years, not for anxiety or any other mental health issue, I was prescribed it for Restless Legs Syndrome and Periodic Limb Movements of Sleep by a neurologist, I am 30 months off this drug and still struggle with a multitude of physical debilitating symptoms caused by the legacy of this drug, symptoms I did not have prior to this medication, ones which are far worse than the original problems for which the drug was prescribed. I ask that your colleague not trivialize the suffering that is endured because I very much doubt that she would have the same opinion had she had to experience this life changing event for herself, nor I doubt would she have endured it with the same resilience, dignity and determination. I would hope that in the near future the support which is sadly lacking is put into place to help those who have had their lives torn apart by this class of drugs, who struggle for years, and to help prevent others from being victims of iatrogenic illness.
I suppose that the reply I am expecting will read something like this:
"This is a complex area of practice. My experience is that GPs are fully aware of the dangers of these drugs and work very hard to minimise their prescribing. The College will continue to support them in this endeavour."
What we the patients are finding is that this is not the case, because if it were then you would not be receiving emails like this one, I would like to emphasize that no warnings or concerns were raised with me over the dangers of this drug by any doctor until after the event, I hope that you will take these comments on board, that you and your colleagues take time to talk to patients who have gone through this nightmare because one thing I do know for sure is that you would not want any of your family to have to endure what is basically a preventable nightmare.
Yours sincerely
Mike Hodkinson
Email from Melanie Davis, Mind in Camden to Anne Milton MP, Public Health Minister, August 4, 2011
Dear Anne Milton
I am the manager of a specialised Benzodiazepine project - Mind in Camden, Minor Tranquilliser Project - which has been operational since 1988. We are Camden and Islington PCT and part NHS funded and see clients from Camden and Islington. I have been the manager of this service for 20 years. During that time, I have dealt with hundreds of clients who ingest minor tranquillisers and have attempted withdrawal from them. We are user led, believe withdrawal is best encouraged rather than enforced and in our considerable experience done at the users own pace. Our aim is to help clients make an informed choice about whether to stay on, stabilise, reduce or withdraw entirely from Benzodiazepines and drugs with similar effects. In the vast majority of cases, local GPS accept our guidance, when we advocate for patients who attend our service. Difficulties arise when GPs try and withdraw clients too quickly and in some cases against the patient's wishes. Ultimately we are not a prescribing service and so hope that our joint working with GPs will provide a way forward for our clients. Without the support of a project like ours, it can effectively be a lottery as to whether a patient gets the appropriate treatment, in relation to withdrawal from minor tranquillisers. Occasionally a GP will not be willing to follow our suggestions and so it is vitally important that there are clear guidelines that we can refer practitioners to.
I write to express my view that your comments on the recent Face the Facts programme, were much appreciated by users of our service. You acknowledged the difficulties associated with addiction to prescribed medication and you also stressed the need for identified clinics for people experiencing this problem. I would also like to make you aware of my project.
Your input was in refreshing contrast to the disappointment many of us felt at Dr Gerada's comments regarding benzodiazepines. I do not feel that Dr Gerada's comments were accurate or supportive of those who take this medication. Dependency to prescription medicine is a serious issue and our service seeks to support GPs to address this issue appropriately.
British National Formulary guidance makes it clear that use of these drugs is indicated for the short-term relief of severe anxiety and that long-term use should be avoided due to the risk of withdrawal symptoms. No doubt Dr Gerada and others are aware of this. It may be the case that this is borne in mind when prescribing this medication to a patient for the first time. However, for long term users (we have many clients who use our service taking this compound for over 20 years) their situation is very different than a patient who has only taken this medication for the recommended time period. Coming off this medication is very likely to be a lengthy and highly difficult process for the long term user and their concerns should not be marginalised, minimised or denied when they report symptoms to their GP.
Whist our clients are largely involuntary addicted, it is important to note that our service does see some clients who have used class A drugs in combination with benzodiazepines. In every case, in my twenty years experience, they have expressed to me that it was harder to come off their benzodiazepines than heroin. A fact that Dr Gerada explicitly denies. Obviously no one would want to underestimate the difficulties associated with heroin use but all the medical literature clearly supports the view that benzos are harder to withdraw from than heroin. This is because the withdrawal symptoms are more protracted and varied. I also note that there are very few dedicated clinics for benzodiazepine users, ours being the only one in London that I am aware of. So there is also a lack of help for those who are addicted to prescribed substances and no pathway to an option to attend rehab.
The BNF contains clear information on managing those patients who may have developed withdrawal symptoms and advocates a slowly tapered withdrawal. The NAC report stated that the optimal duration of withdrawal is not established in the published literature, but that the timeframe for withdrawal should be within 6 months for most patients and it highlights that there should be allowance for flexibility for slowing down if the withdrawal symptoms become too disturbing. In the vast majority of cases, I have found that our long term users cannot withdraw at this rate, not alone any faster and that tapering is best done slowly and at the clients own pace.
Currently Dr Chris Ford, who expresses a sympathetic and informed view of the problems associated with benzodiazepine use, is working on a consultation paper concerning prescribing in general practice. I have offered input to this as it is vitally important that the users of benzodiazepines are given the opportunity to be heard. Although I am not an ex tranquilliser user I am able to advocate on my clients behalf.
Information from the NTA report suggests that the cases reported on the National Drug Treatment Monitoring System have a mean withdrawal time of about a year, indicating that most clinicians are exercising their clinical judgement and managing longer tapered withdrawal periods for those who need it. However, this information will primarily be compiled from the cohort of poly drug users. Our service did report to the NTA for a couple of years which would have included those who were involuntarily addicted from prescribed drug use.
I would be very happy to do a presentation to GPS or write an article for distribution, that would help raise awareness of the issues that benzodiazepine users face, both when taking and trying to come off these pills. As it appears from her comments, Dr Gerada is unaware of the very real difficulties people experience when taking this medication and particularly when they try to withdraw. I am concerned that other doctors may be labouring under the same misapprehension.
Kind regards
Melanie Davis
Mind in Camden
Minor Tranquilliser Service Manager
0207 241 8980
Email from Millie Kieve of APRIL to Dr Iona Heath, President RCGP, August 4, 2011
Re: Benzodiazepine problems personal stories doctors should be made aware of
Dear Dr Heath,
I am including in this email a number of emails from people who contacted APRIL for help (see separate file). I do hope you will read them. I have left in some, the gratitude expressed out of a desperate need to have their problems recognised. You too could receive that gratitude if you would encourage the establishment of specialist withdrawal support for involuntary addicts to prescribed and over the counter medicines. It should not be only charities and web sites such as benzo.org.uk to be the only resource for people suffering iatrogenic problems.
The email excerpts are self explanatory and express the suffering people endure and lack of knowledge many GPs are left with due to poor education. The lack of Clinical Pharmacology & Therapeutics in most medical colleges since the GMC guidelines changed in 1993 to a system of Integrated Medicine, has exacerbated the problem.
Unfortunately the comments by Dr Gerada in Face the Facts last week were based on her lack of knowledge of the problems, possibly due to her own personal experiences or wanting to defend the GPs she represents. However this was unwise for her to speak so, on a subject she had obviously not investigated thoroughly.
In my own experience, my daughter's life may have continued longer than the 30 years we were given, if we had been told that Temazepam is an addictive drug and should not be stopped suddenly. I would like to think that this no longer happens. However last month a very dear friend lost her husband aged 39 and her doctor prescribed the sleeping drug Zopiclone, this was dispensed in a box with no patient information and scant information typed on the box. Just a warning not to drive. No warning of dependency or addiction.
Yours sincerely
Millie Kieve
Adverse Psychiatric Reactions Information Link (APRIL)
Address: APRIL
Room 311 Linen Hall
162-168 Regent St
London W1B 5TD
Telephone: +44 (0)20 7998 1561
Website: www.april.org.uk
email: millie@april.org.uk
• Click this link for Examples of Emails received by Millie Kieve of APRIL
Email from Josh Jarrett to Niall Dickinson, Chief Executive, GMC, August 5, 2011
F.A.O Niall Dickson Chief Executive and Registrar,
Chief Executive and Registrar, General Medical Council
Dear Mr Dickson
I am writing to you as an iatrogenic patient of Benzodiazepines. My concerns are with reference to Dr Gerada, GMC registration Number 2838294. I wish to make it clear that Dr Gerada is not registered as a specialist on the GMC register before I go any further.
It may be that you will refer me directly to contact the GMC "Fitness To Practice Committee" with a "formal complaint", however in this case I am sending my concerns to you as the Chief Executive of the GMC in the hope it will raise one of the most serious cases of misrepresentation I have ever had the disgust to listen to.
I have written to the President of the RCGP, Dr Iona Heath, and have received the most watered down excuse for a justified reply known to mankind. Mr Dickson we live in a world, where it is harder and harder to speak to anyone at the top of their profession, such as you yourself are, but I live in the hope that my email will get your attention and a reply, as it took two attempts and over a month to get any response from the RCGP, which can be seen on www.benzo.org.uk.
On the 27/07/2011 on the BBC programme Face the Facts, Dr Gerada put the final boot into an estimated 1.5 million iatrogenic Benzodiazepine suffers and by her very comments sent a very large and very audible message to GPs " cold turkey is acceptable", this is "my view" as a sufferer of 42 years standing. I would ask you to listen to the programme and hear first hand the fantasy remarks made to BBC 4s John Waite by Dr Gerada.
If this is not a clear message to GPs that there is now a green light to place those of us suffering from decades of denial by many of our GPs of the horrors of benzodiazepine addiction, the affects of withdrawal and to now dismiss us as "exaggerating needy patients" I do not know what is.
I regrettably have 42 years experience under my belt as a first hand sufferer of being legally placed and maintained on this medication since I was 8 years old. I was addicted before my 9th birthday. Now at 50 years old I would say that I, as an amateur, (unpaid professional) have more experience of a Benzodiazepine, it's affects, the withdrawal symptoms and crushed life than Dr Gerada will ever have. I am insulted by every word to have left her mouth, and now fear for my own future and that of the estimated 1.5 million other sufferers, as we are all linked at the hip by our addiction, and all affected equally by the words spoken by Dr Gerada.
I will make my complaint formal in addition to this email to you, as I will not be made to appear a liar along with all the many other suffering by the comments made by Dr Gerada. Why are we not being asked to help educate GPs or have an input? I am human just the same as those not affected by iatrogenic addiction.
The Public Health Minister, Anne Milton even disagrees with the comments made by Dr Gerada. Are 1.5 million people all wrong Mr Dickson?
I sincerely hope you may find the time to listen to the programme and I thank you in advance for any reply you feel able to give.
Yours sincerely
Josh Jarrett
Complaint about Dr Gerada from Calum McLean to GMC, August 5, 2011.
FAO GMC Fitness To Practice Committee 7th Floor, St James's Buildings, 79 Oxford Street Manchester, M1 6FQ
Dear Sir or Madam,
Complaint: Dr Clare Gerada, GMC registration Number: 2838294
I was shocked to discover the above doctor broadcast comments on BBC4 National Radio indicating, and by inference encouraging, fellow doctors to overly rapid detox patients from Benzodiazepines.
This broadcast resulted in a right and proper rebuke from world renowned Benzodiazepine tapering expert Professor Heather Ashton who wrote the internationally acclaimed Ashton Manual based on actual case studies and proper science. Professor Ashton has helped thousands of patients taper SAFELY at a rate that does not cause harm or risk their health.
For the avoidance of doubt, overly rapid detox of Benzodiazepines can prove fatal.
What appals me more about Dr Gerada is that she chairs the Royal College of General Practitioners. By holding that position she accrues, undeservedly in my view, kudos that other doctors may be inclined to follow, thereby placing thousands of patients in harm's way.
Evidently this is in breach of the Hippocratic Oath.
For proof of the extent of this mess, which Dr Gerada is ignorantly helping to propagate, simply read a few pages of the Benzodiazepine help forums:
The TRAP (over 4,000 members) or www.benzo.org.uk or APPGITA.
Furthermore, Dr Gerada is NOT registered as a specialist on the GMC register. This in and of itself, infers she has no expert knowledge of SAFE Benzo tapering.
Dr Gerada broadcast the potentially dangerous advice:
"I'm a GP who's been managing this problem for about 20 years and you can get off them, some patients take a number of months, some patients can do it in two to three weeks..."
The DANGER here is that we have a knee jerk reaction to this radio broadcast and the poor clinical practice of Benzo cold-turkey-detox advocated by this questionable doctor. That is other similar less well informed doctors immediately go on a witch hunt and rapid detox droves of their patients instead of referring them to proper sites like the TRAP Forum.
I am very lucky in having a brilliant doctor who is working with me at my speed and SUCCEEDING at detoxing me from Benzodiazepines in a SAFE way at my pace which causes NO or LITTLE anxiety. That is anxiety caused by the worry a doctor will cut your prescription off cold turkey and put you through Hell.
Please accept this as my complaint against Dr Gerada to the GMC Fitness to Practice Committee. I don't want to see Dr Gerada struck off. Just properly trained to taper Benzo patients at a SAFE and NON-DR-CAUSED-ANXIETY cold-turkey-taper-rate.
Yours sincerely,
Calum McLean
Letter from Josh Jarrett to PM David Cameron MP, August 6, 2011
The Right Honourable David Cameron MP Prime Minister of the United Kingdom.
Dear Prime Minister
May I start by saying I have never written to the most powerful man in the land before, of any Government. That having been said, it is for that reason I write to you, as all the others I have written to, or been signposted to write to, leave me by the roadside.
My name is Joshua Jarrett and I am a 42 year victim of iatrogenic Benzodiazepine addiction. I have written to Dr Iona Heath the president of the RCGP (see above), and said to Dr Heath, "if I cannot turn to you Dr Heath as the president of the RCGP, who can I turn to" and after pouring my very heart out to Dr Heath I received a few lines back which did not address any of the two emails sent by me born out of frustration, terror and sheer desperation.
The very short reply from Dr Heath may be viewed at www.benzo.org.uk.
As I further said in a letter (see above) to Niall Dickson, Chief Executive to the GMC, it is harder and harder to get through to a person at the top of their professional field, and with that in mind, Prime Minister, I plead with you now, please reply to me, please do not abandon me. I have had that all of my life.
I ask that you do not pass me over to the "usual channels of enquiry to seek address for my suffering" it is to you, as my prime Minister I look to for help. I was placed on Benzodiazepines when as an 8 year old boy, I was considered a "problem child" a "handful" and so for the next 42 years, I have suffered both from the Benzodiazepines and the Doctors in denial that my symptoms and the horrors of withdrawal are real. I have been blamed by the very people who addicted me, for no one can say with any justification that I, as an 8 year old child, and addicted before my 9th birthday, had an informed choice, nor did my Mother.
No one can say, with justification, that when I was aged 11 years old, and placed on Ativan (lorazepam) after being on Librium (chlordiazepoxide) for already 3 years, that I was in a position to know I was an addict, nor should any blame be apportioned to me. I spent all my childhood in withdrawal, in pain with horrendous fear and anxiety, looked on as a freak by my peers because I had no energy to function as a child might hope to do. I could not kick a ball without missing it, or falling over. I could not stay awake in school for being over medicated due to Doctors advising my mother to "up the doses" when I got a "handful" again as tolerance became the norm to my medication with each increase.
I fought harder than most 8 year old children to be excepted, and yet I failed. I tried to not take the Benzodiazepines, I "faked" taking them to my Mother, as I new I would be lifeless, but then I would withdraw by not taking them, and could only stop the symptoms by taking them again. My days of spitting out my medication stopped as I conformed to their hold on me, I lost interest in life.
The derision I still face today as an iatrogenic addict from almost all of the medical profession is the same as ever. I grew up being told by Doctors that my symptoms were "in your head" and that "if you do not stop making a fuss people will get sick of you" I was not yet 13 years old, Prime Minister, what chance did I have?
When I moved back to London in February of this year, and had to get a new GP, on my first appointment, and without my Medical Notes in front of them, as they had not yet been sent to the new GP, I was told "reduce or find another practice" I was treated as an illegal street user walking in for a fix. But for Camden MIND and people like Melanie Davis, manager of the only support group in London, to the best of my knowledge, Barry Haslam of Oldham Tranx, the only current dedicated Benzodiazepine place in the UK, the support of John Perrott, Ray Nimmo, Una Corbett of BAT (Battle Against Tranquillisers) and other campaigners for justice for iatrogenic victims, who helped advise me for the first time in my entire life on how to challenge my GP, I would be an statistic on a mortuary slab.
On the 27/07/2011 I took part in a small way in BBC 4s Face the Facts programme about the estimated 1.5 million people addicted to Benzodiazepines, and in that programme Dr Gerada Chairman of the RCGP, made a mockery and falsehoods affecting every iatrogenic addict in the UK and for anyone listening affected worldwide with her statement that "it's a prescribing success story" amongst other things. A total kick in the teeth for the broken souls of decades of addiction. I would ask if you would kindly set half an hour aside Prime Minister to listen to the programme, the link is here.
I would also ask Prime Minister if you would look at www.appgita.com chaired by Jim Dobbin MP and look at the work done by John Perrott and Barry Haslam and so many other dedicated people. I ask this of you as my Prime Minister. If I cannot look to you who can I look to, I ask for your compassion as the leader of our country.
I wrote to the Public Health Minister Anne Milton (see above) for help too, Ms Milton is the first public Health Minister to admit "there is a problem", and that "there has been some denial of the problem" and that there is "no denial now". I wrote to thank Ms Milton to thank her for her words and further asked, as she stated in the BBC 4 Face the Facts programme, that there was a need for specialist clinics and support for the little known group of benzodiazepine addicts estimated at 1.5 million people, for help.
We all need help Prime Minister, every last one of us addicted to a prescribed and legal drug that, whilst it has a value for some medical reasons, has been used to exasperate the misery, loss of family and friends, loss of ones own self, and the loss of life due to suicide in addition to all being blamed on the innocent victims of varying ages for decades. It has to be addressed this problem is not going away, the opposite would be true.
The true experts on this subject are the victims, the amateurs, us, the (unpaid professionals) of iatrogenic addiction. Prime Minister, for the sake of the estimated 1.5 million life's, I implore you to act now to help save us from the blackness of the world of legal addiction, not by telling us through an advisor alone, it is to you I write, not an advisor who will fob me off with the calculus of science favourable to the pharmaceutical industry, or have an undeclared interest like Professor John Strang. The human word and assurance is the language of understanding.
If I as a 42 year survivor can reach out to you prime Minister, please do me the human courtesy of grabbing hold of my arm and helping to pull me and 1.5 million others out of the swamp of desperation we all strive to get out of. I want to live, I want to be happy, I want to be the boy I never was I want to be a full human being. I hope you will not abandon me as others have. People tend to sit up and listen to Prime Ministers. I thank you in advance for any reply you give to me.
Yours sincerely
Josh Jarrett
Email from Robert A Lay to Dr Iona Heath, President of the RCGP, August 7, 2011
Statement of Dr Gerada, presented on "Face the Facts"
I understand that during a recent broadcast "Face the Facts" Dr Gerada, Chair of the Royal College of General Practitioners, made "some very ignorant comments" when presented with evidence of over-prescribing and withdrawal symptoms. When asked by John Waite about the severity of withdrawal symptoms Dr Gerada said that they were "overstated".
My own experiences tell me that they are underestimated. You see I am one of that unfortunate 13-16% of long-term Benzodiazepine users that experienced Benzodiazepine Withdrawal Psychosis. This being due to professionally unmanaged withdrawal.
I can well understand the need to protect the RCGP and its members but more important is the need to protect truth.
Well aware by now after that event (of 25 years ago) that I also experienced, misinformation about my prescribed medication and later sarcasm, and invitation, twice, the warning that if I didn't trust my GP, to find another.
I am also well aware that my prescriber should have then understood the dangers and the formally issued advise to warn patients of the inherent dangers of what they were taking (had been prescribed) and the needs and methods of withdrawal.
When I finally insisted that I should withdraw I was simply given a choice of accepting the repeat prescription or not. I left the consultation without that repeat prescription or the invitation to retake my seat to draw up a personal withdrawal plan.
All I knew about withdrawal was that it should be done slowly. Everything being relative I considered two weeks enough.
Sometime later, during "uncomfortable" withdrawal symptoms such as rebound insomnia, anxiety, I learnt that we had a Mental Health Community Team. Following my request and more sarcasm from my GP he agreed that I could visit the Mental Health Centre.
Eventually a "counsellor" contacted me that I was soon to learn knew nothing of Benzo problems. In fact she said enough to make me understand, admitted, that she was using me in order to understand. The "counselling session" unexpectedly came to an end after six weeks and I was "passed" by my "counsellor" to the care of my wife (who had not the vaguest idea of my real condition or how to care for me) and a local "support group."
Understandably there was no one that had any idea or understanding of my suffering or needs. Conversely by this time I was so desperate that when a person there offered me use of a subliminal recording, in desperation, ignorance, and emotional turmoil I accepted this offer.
Anyone in his or her right mind understands the danger of this sort. I was by this time also in a very vulnerable state with all kinds of irrational thought and behaviours. I gained another meeting with my "counsellor" and struggled to explain my dread and fears. As I stammered and stuttered she took me by the elbow and led me to the exit saying that "whenever someone comes to see me like this I think they are coming to a crisis." How right she was and the following day I was on route in a most dreadful psychotic state to a psychiatric hospital.
Because of the "content" of this psychotic episode, the psychotic "truths" I could not disclose anything but could only unsuccessfully try to suppress all thought and knowledge of the unbearable psychotic "reality" I discharged myself to be reminded by my GP that I was a "depressive personality". Apparently no one knew what had taken me into hospital.
Nine months passed before a valuable memory returned followed weeks later by yet more to help weaken the destructive lingering, persuasive and intrusive psychotic convictions. Nine years more however and those uninvited intrusions persisted until my GPs locum decided to arrange psychotherapy.
A bit about my "intrusions." They were and are caused and triggered by the extreme, prolonged and unexpected traumatic episode that I was enduring the worse of all was that triggered simply by my hearing the name of my "counsellor" that at had behaved so cruelly.
Within hours the intrusive memories gained so much power that I lost control. Lost control not only because of the powerful impact of memories but also by the unfamiliar, unwelcome and uncontrollable rage that accompanied all. I have hitherto forgotten to mention that during awful rebound withdrawal reaction anxiety etc. I experienced partial but significant irreversible sight damage. During the abovementioned powerful re-experiencing I suffered further sight damage.
I regret that my account may be a little disjointed perhaps because I cannot linger here too long. I admit that I do try to avoid such broadcasts as "Face the Facts" because of risk of repercussions to my own health but I remain to ask that you recognise that Dr Gerada's statements (as read) during that broadcast did not fit the facts and to trivialise addiction and withdrawal is wrong and unacceptable.
I must end by adding that my now retired GP did apologise for his "attitude problem" and that I have also met two psychiatrists that have been most apologetic.
Yours sincerely,
Robert A Lay
Email from Robert A Lay to Anne Milton MP, Public Health Minister, August 7, 2011
Dear Minister,
Controversy surrounding Benzodiazepines and Withdrawal Problems
That this continues is obvious from recent radio broadcasts sufficiently so that I feel I must add my evidence.
I am one of that 13-16% of long-term users that, experienced Benzodiazepine Withdrawal Psychosis.Well aware by now after that event (of 25 years ago) that I also experienced, before withdrawal misinformation about my prescribed medication and later sarcasm, and invitation, twice, that if I didn't trust him, my GP, to find another.
I am also well aware by now that my prescriber should have then known about the dangers and the formally issued advise to warn patients of the inherent dangers of what they were taking (had been prescribed) and the needs and methods of withdrawal.
When I finally insisted that I should withdraw I was simply given a choice of accepting the offered repeat prescription or not. I left that consultation without that repeat prescription or the invitation to draw up a personal withdrawal plan.
All I knew about withdrawal was that it should be done slowly. Everything being relative I considered two weeks being enough.
Sometime later, during "uncomfortable" withdrawal symptoms such as rebound insomnia, anxiety, I learnt that we had a Mental Health Community Team. Following my request and more sarcasm from my GP he agreed that I could visit the Mental Health Centre.
Eventually a "counsellor" contacted me that I was soon to learn knew nothing of Benzo problems. In fact she said enough to make me understand, admitted, that she was using me in order to understand. The "counselling session" unexpectedly came to end after six weeks and I was "passed" by my "counsellor" to the care of my wife (who had not the vaguest idea of my real condition or how to care for me) and a local "support group."
Understandably there was no one that had any idea or understanding of my suffering or needs. Conversely by this time I was so desperate that when a person there offered me use of a subliminal recording, in desperation, ignorance, and emotional turmoil I accepted this offer. Anyone in his or her right mind understands the danger of this sort. I was by this time also in a very vulnerable state with all kinds of irrational thought and behaviours. I gained another meeting with my "counsellor" and struggled to explain my dread and fears. As I stammered and stuttered she took me by the elbow and led me to the exit saying that "whenever someone comes to see me like this I think they are coming to a crisis." How right she was and the following day I was on route in a most dreadful psychotic state to a psychiatric hospital.
Because of the "content" of this psychotic episode, the psychotic "truths" I could not disclose anything but could only unsuccessfully try to suppress all thought and knowledge of the unbearable psychotic "reality" I discharged myself to be reminded by my GP that I was a "depressive personality. Apparently no one knew what had taken me into hospital.
Nine months passed, and my dreadful state continuing, before a valuable memory returned to help weaken the destructive lingering, persuasive and intrusive psychotic convictions. And yet more memories returned. Nine years on however and those uninvited intrusions still persisted. My GPs locum decided to arrange psychotherapy.
In time I was being assessed for psychotherapy. Each interview, each intrusion which were more into my more remote past brought so much more misery that I could not venture to drive for two hours. Finally admitted that these encouraged excursions into my more remote past AND the involuntary intrusions of psychotic memories were too much for me and I backed out.
A bit about "intrusions". Triggered by the extreme and unexpected trauma that I was enduring the worse of all was that triggered simply by my hearing the name of my "counsellor" that I had met and that had behaved with such cruelly. Within hours the memories gained so much power and I lost control. Lost control not only because of the powerful impact of memories but also by the unfamiliar and unwelcome rage that accompanied all. I have hitherto forgotten to mention that during all awful rebound withdrawal anxiety I experienced partial but significant irreversible sight damage. During the aforementioned powerful re-experiencing I suffered further sight damage.
I regret that this account may be a little disjointed perhaps because I cannot linger here too long but I remain to ask that, with more urgency, the recommendations and work of Mr Barry Haslam of Oldham in relation to dedicated clinics and so on. Also the work of all others that have for long contributed their time and energies to these essentials.
Because of risk of repercussions to my own health I do not spend too much time on this subject therefore I did not hear "Face the Facts" but I understand that you "took issue with Dr Gerada and in doing so became the first Health Minister to publicly acknowledge prescribed tranquilliser addiction." Thank you.
To end I must add that I bear no ill will against my now retired GP who did apologise for his "attitude problem" and that I have also met two psychiatrists that have been most apologetic. However for given reasons I deplore the utterly destructive treatment received from that member of our Mental Health. Probably her training was in "Brief Therapy" I have more to say on this matter eventually.
Yours sincerely,
Robert A Lay
Email from A.L. to Dr Iona Heath, President RCGP, August 12, 2011
Dear Dr Heath,
I write to you with regards to Dr Gerada's comments on a recent 'Face the Facts' broadcast on Radio 4 concerning benzodiazepine tranquillisers. I was on these tranquillisers Valium/Ativan for over 30 years.
Firstly, I would like to point out that no one informed me at the time that these were addictive drugs and secondly, that contrary to Dr Gerada's statement that you can withdraw quickly in a short space of time - I found it extremely difficult, prolonged and I do not have the words to describe the suffering I had to endure.
Almost immediately after being given the medication, I started exhibiting an array of strange symptoms, mainly balance problems/dizziness, rapid heart beat, seizures, agoraphobia, pains in joints and muscles (for which painkillers and beta blockers were added) buzzing down arms and legs, difficulty swallowing - to name but a few. These symptoms were further intensified during withdrawal with added insomnia and sweating.
For over 20 years whilst on this 'medication' I remained housebound. My inability to go out only started to lift after I withdrew from all medication. The link between being housebound and tranquillisers was highlighted in Professor Heather Ashton's Manual, had this knowledge been made available to me, I could have put myself through withdrawal a lot earlier.
Dr Gerada clearly does not understand what these pills do to people's health, or the severity of the withdrawal process. I find it alarming that a doctor in her position fails to take any notice of what patients are saying, or what other professionals are reporting.
It is known that addiction can set in quite fast, so that would mean that by the time I was 13 years of age - I needed to go through a withdrawal, but no one had the guts to tell me, so I was just left on the pills and abandoned. If a lay person had introduced me to drugs, they could be charged with drug dealing - doctors do it, and are rewarded with big pay cheques.
I would like to further add, that I have never taken an illegal drug in my life. These doctors should be ashamed of themselves and those who cover for them, indirectly, take the responsibility on themselves.
A.L.
Letter from Christine Downes-Grainger to Dr Clare Gerada, Chair of RCGP, August, 13, 2011
Dear Ms Gerada,
I have listened to your contribution to Face the Facts.
I enclose a copy of Prescription for Injury by my late husband, Colin Downes-Grainger. A summary of how he became addicted and the saga of how he came off, by his and my efforts over three years, can be found here on benzo.org.uk. There is also a pdf copy of this book there, along with all his other campaigning letters and pamphlets.
Colin was a primary school teacher. The benzodiazepines prevented him having empathy with children and fellow teachers. The unrecognized effects of this and tolerance withdrawal led to the prescribing of further drugs by the GP to fix these “new problems”. He was given tranquillisers - 40/60mg daily, anti-depressants, anti-psychotics, sleeping pills, prescription painkillers and medicines for the side effects of all these drugs. In such a drugged state he was unable to turn out for and complete a rewarding day's work. He was retired sick from teaching in 1985, aged 38. While our three children grew up, he spent 95% of his life in the bedroom, suffering physical symptoms, agoraphobia, terrors, compulsions, anxiety and depression, living a life with only the short-term aim of getting the next prescription. We thought he was sick, but had no idea why.
When finally off all the drugs in 2003, these conditions had disappeared and I was able to enjoy again the company and personality of the man I had married in 1969. Painful aspects of withdrawal lingered on but he surmounted these as much as he could as he campaigned for greater awareness. He wanted to prevent and reduce the suffering for other victims. He was sure that if he laid out all the facts to those in authority they would be convinced. Gradually he discovered the situation would not be as he had hoped. The result was his determination to produce a book which analyses every factor in this long-running, neglected scandal.
Yours sincerely,
Christine Downes-Grainger
copy to Dr Iona Heath, president@rcgp.org.uk
Email from Mary Baker to Dr Iona Heath, President RCGP, August 15, 2011
Dear Dr Heath,
This letter of complaint concerns several serious issues concerning Dr Gerada, chair of the RCGP. After listening to her incorrect and misleading comments on Face the Facts on Radio 4 last week, I was amazed and very surprised to hear that her specialist area is that of drug addiction and her responsibility is the training of GPs. But what expert information is being used to train these GPs? Is it Dr Gerada's own version of her beliefs, teaching her propaganda of benzo misinformation?
After listening to Dr Gerada's unbelievable comments, my first thought was that Dr Gerada has an overall general lack of knowledge, and is ignorant of the many serious health issues that come with prescribed benzodiazepine drug addiction. It is either that she is unfortunately ignorant or that she has purposely gone to great lengths to defend benzos as being innocuous drugs - drugs that apparently do no harm, which will definitely encourage the prescribing of them by many of your members.
She states that she has been managing this problem for nearly 20 years, also stating that GPs are prescribing sensibly (some are, many are not) that prescriptions for benzos have significantly decreased (prescribing statistics show a significant increase) that coming off benzos takes just 2 to 3 weeks or a number of months (very dangerous for patients, it can take 1 to 5 years to withdraw), plus withdrawal isn't that hard (all benzo experts strongly disagree) plus withdrawals are over-stated (one cannot over-state horrendous withdrawals) and patients do not have problems coming off (tell that to the fairies! It's profoundly ignorant).
These statements were firmly criticised by Anne Milton MP, Public Health Minister who said she disagreed with Dr Gerada - and rightly so! We all agree with Ann Milton, who has acknowledged the many serious issues surrounding prescribed benzo addiction, and the protracted and very painful withdrawal symptoms, which is no small task for a very busy MP too undertake but which she has undertaken with vigour and with interest by listening to benzo addicted patients.
I am not just a benzodiazepine campaigner but have been recognised and diagnosed as having brain damage, acquired dyslexia, a cognitive deficit and a very poor memory. I am still suffering these effects from these drugs and withdrawal after many years on these drugs - now 26 years off the drugs.
Yours sincerely,
Mrs Mary Baker
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