Dear Dr Cope, 5 July 2015
I have been given your email address in the reply by Hannah Hobson to my letter (below) to Professor Sir John Tooke on involuntary (iatrogenic) tranquilliser addiction.
I am pleased to have received a positive response and I, and I am sure others, will be happy to contribute to the call for evidence.
However, I do hope that this will lead to effective action. Over a thirty year period MPs, academics and victims of benzodiazepine and z drugs prescribed by their GPs have provided extensive evidence, all of which is on the website www.benzo.org.uk
More recently, evidence has been sent to the Department of Health, the MHRA, the Royal Colleges, the MRC, various professors and a host of other people and organisations responsible for health, through the APPGITA political campaign www.appgita.com
As you will have gathered from my letter, none of this has led to effective action to tackle this problem. I hope that this call for evidence will actually lead somewhere apart from yet another publication or report.
What is required is the enforcement of the 1988 CSM 2 – 4 week tranquilliser prescribing guidelines for new patients. Secondly, the creation of national dedicated tranquilliser withdrawal services based on the Ashton taper, separate from substance misuse services as the treatment requirements are different. Thirdly, proper drug regulation by the MHRA so that companies do not cause harm by withholding clinical trial data for commercial gain, for example, as Wyeth did with Ativan and GSK did with Seroxat.
On 3 July 2015 at 11:08, Policy <email@example.com> wrote:
Dear Mr Perrott,
Thank you very much for your email to Sir John Tooke concerning our ‘Evaluating Evidence’ project, and I apologise for the delay in responding. We have received a lot of interest in this study, and are currently considering its scope in light of the feedback we have received. Early meetings with stakeholder groups have highlighted to us that industry involvement in research, and the perception of such research by the medical community and citizens, is an important topic. We are currently considering whether this question would be best answered by the ‘Evaluating Evidence’ project, or a separate but parallel work stream. We feel the breadth of issues may be better suited to having multiple focused projects.
Thank you for the information you sent regarding the problems associated with involuntary addiction to benzodiazepine, and the long battle that patients have had to get these problems properly recognised. Clearly this is an important topic and we will carefully consider how best to incorporate it into our project, or parallel projects. We do plan to seek wider input via a call for evidence issued later in the year. Any individual or organisation (including the APPGITA, if they wish) will be able to contribute views via this route, and we will be in touch with information on how you can contribute in due course.
In the meantime, if you have any further questions, please contact Dr Claire Cope, our Senior Policy Officer (firstname.lastname@example.org), who will be working on the ‘Evaluating Evidence’ project over the coming year.
Dear Professor Sir John Tooke, 27 June 2015
I am writing regarding a BBC news article yesterday in which Prof Dame Sally Davies was reported as having concerns about the use of medicines damaging faith in the way research is carried out and presented, and ‘about a view that doctors and scientists are “untrustworthy”’. The article said that Prof Dame Sally Davies has written to you in your capacity as President of the Academy of Medical Sciences to request an independent review of the safety and efficacy of medicines.http://www.bbc.co.uk/news/health-33127672
I have provided research in an unpaid capacity for an All Party Parliamentary Group on Involuntary Tranquilliser Addiction (APPGITA) for the last 5 years. The APPG campaigned for patients’ rights, who through no fault of their own have become addicted to benzodiazepine and z drug tranquillisers prescribed beyond the 2 – 4 week CSM guidelines issued in 1988.
I wish to contribute to the review being conducted by the Academy of Medical Sciences with the following evidence:
After 30 years of inaction by the Department of Health to help over a million patients who have been abandoned by their GPs on these prescribed drugs (with most likely to be addicted), the All Party Parliamentary Group on Involuntary Tranquilliser Addiction was formed in 2008 and chaired by the late Jim Dobbin MP.
The work of APPGITA and the campaign is documented on this website which I manage http://www.appgita.com/
APPGITA worked hard to get the Department of Health to take effective action. In July 2009, Gillian Merron, then Public Health minister, announced that the Department of Health would conduct a policy review on addiction to medicines, including tranquillisers.
Campaigners, some of whom had been bringing this issue to successive governments’ attention for nearly thirty years, welcomed Gillian Merron’s statement. However, it was not long before it was apparent that the process was developing into a sham for the following reasons:
1. The Department of Health and the Royal Colleges continually and consistently persisted to incorrectly treat the issue as substance abuse by the patients. This continued throughout the Department of Health’s Policy review processes. In reality, patients were not warned regarding the addictive nature of benzodiazepines. One benzodiazepine widely used, Ativan, had no warnings regarding dependence from Wyeth the manufacturer receiving a licence in 1972 until 1988,by which time a benzodiazepine addict population had been created. Wyeth knew that it was addictive in 1972 through the De Buck trials yet the regulatory authority at the time took no action. Evidence has been presented to Dr June Raine, Director, Vigilance and Risk Management of Medicines at the MHRA showing that Wyeth knew about Ativan by comparing drug data sheets from different countries yet, to this day, no action has ensued. I wish to point out that there are still patients being prescribed Ativan (lorazepam) today who became addicted in the 1970s. I personally suffered a 32 year addiction to Ativan and a protracted withdrawal with no NHS support because there are no NHS tranquilliser withdrawal services. The only support available is provided by a handful of specialist charities which have been supporting those iatrogenically addicted since the 1980s.
You may read more about this here – http://www.benzo.org.uk/behan2.htm
The MHRA routinely destroys clinical trial data after 5 years making accountability of drug companies almost impossible. Not one drug company has been prosecuted for withholding data and the MHRA appears to be the first line of defence for the industry. Not one of the recommendations which would benefit patients made by the Health Select Committee’s 2004/5 report on the Influence of the Pharmaceutical Industry was implemented. The enquiry found that the MHRA is far too close to the industry and operates a revolving door system.
2. As part of its policy review, the Department of Health commissioned two reports, one from the National Addiction Centre at Kings College London, the other from the National Treatment Agency (now PHE). Professor John Strang who co-authored the National Addiction Centre (KCL) report informing the review had undeclared interests with manufacturers of the drugs which were the subject of the review, including Genus/Brittania which manufactures Ativan and Clonmel Healthcare whichmanufactures diazepam zopiclone and zolpidem.
Professor Strang also had a financial relationship with Napp Pharmaceuticals, Reckitt Benckiser all of whom manufacture codeine containing over the counter products which were also part of the subject matter of the DH policy review. These conflicts of interest were not declared by Professor Strang at tendering or publication.
Despite the fact that the NAC report was supposed to be a literature review it “missed” 129 papers documenting the harms caused by long-term use including correlation with early death; long-term use causing dementia; that 40 – 80% of users become dependent; the withdrawal syndrome being much longer than for other drugs of dependence; no mention of the post-withdrawal syndrome (PWS); that symptoms may persist for up to 5 years or more; withdrawal taking up to a year or more; social deterioration including failure in achievement and professional decline , divorce, bankruptcy; suicidal ideation, suicide attempts, suicides caused by addiction/withdrawal symptoms; depression; long-term illness being caused which is much worse than the original condition benzos prescribed for; long-term use causing agoraphobia, depersonalisation and perceptual distortions; benzo babies (floppy infant syndrome); and toxic poisoning.
None of these known harms were mentioned in the NAC report yet the scientific papers were all easily accessible from websiteshttp://www.benzo.org.uk/amisc/rpeart.pdf
Most notably Professor Ashton’s voluminous work on tranquillisers and tranquilliser withdrawal was virtually ignored. Professor Ashton is a world recognised expert on benzodiazepines and has written over 70 papers on the subject. Professor Ashton wrote a manual on benzodiazepines http://www.benzo.org.uk/manual/ which underpins the successful slow taper method of withdrawal and also ran a tranquilliser withdrawal clinic in the 1980s.
The evidence of benzodiazepine related brain damage by another benzodiazepine expert, Professor Lader, was dismissed in one sentence. http://www.benzo.org.uk/lader2.htm
The late Jim Dobbin MP wrote to the Department of Health and Andrew Lansley regarding Professor Strang’s undeclared pharmaceutical interest but no action was taken.
I have written to the authors of the NAC report asking for an explanation but they do not reply.
The report provided by the National Treatment Agency (NTA) informing the review was incorrectly on substance misuse. It contained incorrect information quoted by Earl Howe, Health spokesman in the House of Lords, more than once in Parliamentary debates, including the claim that most local areas had tranquilliser withdrawal services when a survey I conducted proved that 83% of local areas did not. Survey of PCTs in England recording provision of services for involuntary tranquilliser addiction by John Perrott
In 2014 the Department of Health figures for drug hospital admissions showed that prescription drugs dwarf those for illegal drugs with a total for heroin and cocaine combined at 4684 yet admissions for prescription drugs (benzodiazepines, z drugs and antidepressants) combined total 54,474. You would think the Department of Health would act on this yet inaction yet again prevails.
3. Further undeclared conflicts of interest in the benzo campaign included Professor Nutt. A submission was made to the ACMD in 2003 on the harms associated with benzodiazepine tranquillisers. On the advice of the ACMD Technical Committee chaired by Professor Nutt the ACMD concluded that the reclassifying and/or rescheduling of benzodiazepines would be likely to be ineffective. Professor Nutt had serious undeclared conflicts of interest at the time with benzodiazepine tranquilliser manufacturers, including Wyeth which manufactures Ativan. You may read more about this hereOmand Review of the ACMD
Professor Nutt has been a strong advocate of the use of drugs including benzodiazepines and antidepressants. He has financial links with many drug companies which he often does not declare. The credibility of the 2003 government inquiry into anti-depressant drugs on which he sat was questionable with most of the inquiry members, including Professor Nutt, having shareholdings or other links to the manufacturers. GSK’s Seroxat was known to cause suicidal behaviour amongst other ADRs. Professor Nutt and Professor David Baldwin, who also has many pharmaceutical interests, jointly fronted the promotional press launch of Seroxat.
I also point out that the half-dozen tranquilliser withdrawal charities, including BDTP http://www.btpinfo.org.uk/ and CITAhttp://www.citawithdrawal.org.uk/ report that antidepressants now outnumber benzodiazepines in calls from patients needing help withdrawing from psychiatric medication.
I have reported both Professor Strang and Professor Nutt to the GMC but the GMC does not understand what a conflict of interest is or that it includes a bias or a perception of bias and does not necessarily mean a direct financial reward to either the professor concerned or the drug companies involved. I also reported Professor Strang to Kings College London which conducted a whitewash inquiry and found him not guilty. It is impossible as a damaged patient to challenge powerful institutions or for that matter government bodies and exact any fairness as they are all self-serving and protect themselves.
4. Doctors continue to ignore the 1988 CSM 2 – 4 week prescribing guidelines which remain unenforced after 27 years of non-compliance which caused the problem in the first place.Patients we are in contact with verify this and prescriptions for tranquillisers have remained at around 16 million for a decade.
What is the point of guidelines if doctors ignore them?
Many doctors do not understand ADRs because they do not receive training in pharmacology.
Patients are left on medication, especially psychiatric medication, for years with no review. Adverse drug reactions are mis-diagnosed as new symptoms leading to polypharmacy, patients are withdrawn too rapidly and withdrawal symptoms are often mis-diagnosed.
All of these issues have been reported through voluminous correspondence with the Department of Health, PHE, the Care Quality Commission, the Royal Colleges and numerous other agencies and organisations over nearly three decades and still no effective action has been taken.
My MP, Eric Ollerenshaw, a member of APPGITA, requested a meeting with Prof Dame Sally Davies on the issue of involuntary tranquilliser addiction in July last year but her office informed him that she was too busy to meet him.
I suggest you look at the APPGITA website post 25 years of “taking it seriously” by the Department of Health – a trail of false promises
It is no wonder that patients are mistrustful. The various comments by Department of Health officials and ministers are typical of the formulaic responses, pretending to care, and obfuscation received in correspondence over the years.
Prof Dame Sally Davies says that “I have, therefore, reluctantly come to the conclusion that we do need an authoritative independent report looking at how society should judge the safety and efficacy of drugs as an intervention”.
The CQC is supposed to protect patients and I appreciate they are under pressure. Professor Steve Field who is Chief Inspector knows all about this issue through correspondence with me and a meeting with the late Jim Dobbin MP. He was also past Chair of the RCGP and is aware of the addictive nature of benzodiazepines and the ordeal patients undergo to get off them. Yet, the CQC has taken no effective action on this issue despite promises to do so. Perhaps it is just too big and the CQC, like successive governments, does not know how to tackle it.
This issue is not confined to statins or clot-busting treatment for strokes. The health and care system is rotten at the core and has been for decades. It is pharmaceutically led with scant regard for patient safety. When patients are damaged by prescribed drugs all the organisations responsible for health join ranks and obstruct those damaged who ask for fairness and help.
Any enquiry must include the Department of Health, for which Prof Dame Sally Davies is Chief Medical Officer, and all the other organisations responsible for health, because the problem is systemic.
I and all the other patients I am in contact with look forward to hearing from you.
Professor Dame Sally Davies, Chief Medical Officer, Department of Health
Sir Richard Thompson, Former President, Royal College of Surgeons
Professor Steve Field, Chief Inspector, CQC