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Beat the Benzos Conference
Beat The Benzos Index Page
Report by Gwenda Cannard, Executive Officer
TRANX Inc, Australia
The Beat the Benzos Conference was held in Croydon, England, October 31st, 1st & 2nd November 2000.
The Conference was hosted by VOT (Victims of Tranquillisers), a group formed primarily to sue the drug companies for damages caused by dependency on benzodiazepines. VOT has good support from Phil Woolas, a Member of Parliament for Oldham and East Saddleworth, who became interested in the problem when approached by Barry Haslam, one of his constituents.
The Conference was funded by a private donation from a member of VOT who wished to remain anonymous.
The Conference sought to bring together a number of people involved in benzodiazepine dependency, and was also to launch a renewed campaign in the UK to reduce prescribing and seek compensation for people damaged as a result of their long term benzodiazepine use.
The Conference was attended by a range of people, from professionals working in the field, to support and self help groups and individuals whose involvement varied from providing email assistance to writing books.
Attendance was approximately 150 people, with attendance affected by the severe storms and flooding experienced in England at the time.
It was a wonderfully affirming experience for me to meet so many people engaged in providing help for people struggling through benzodiazepine withdrawal and fighting for changes to prescribing and justice for the people affected by benzodiazepines.
I met some truly inspiring people whose courage in achieving recovery against all odds is breathtaking. Madelon Albulet is a Canadian woman, who, although still quite unwell herself, provides advice and support via email to many people worldwide. Carol Packer was another recovering person I met who had been in touch through emailing me.
Joan Gadsby is a very gutsy Canadian woman who had just published her book detailing her addiction to benzodiazepines and her attempt to sue her doctor. She was unsuccessful and is now suing her lawyer.
Felicity Bielovich is a white South African woman who has written two books describing her life on benzodiazepines which included a long period of time as a patient in a psychiatric hospital. She now dedicates her life to raising awareness about benzodiazepines through public speaking and through her books in a country where health care is very basic.
It was also of great interest to meet representatives from Kilen, the Swedish consumer group which has developed a data base on consumer reported side effects of drugs and advocating for compensation for consumers affected by adverse drug effects. In their brochure, Kilen quotes the experience of Lorazepam users in Sweden. From 1984 to 1988, Kilen received 420 reports of side effects of Lorazepam including dependency. By contrast, doctors reported 18 cases of adverse effects to the Swedish Medical Product Agency, none of which included dependency. Of the 18 reported cases, 7 were acknowledged by the authorities as side effects from the drug.
The Conference focussed on a number of areas, with speakers providing different perspectives. The areas were: defining the problem; legal issues; support; treatment and carers, causes of the benzodiazepine problem, neurodevelopmental effects in babies, international perspectives, prolonged withdrawal syndrome and use with illicit drug users.
Charles Medawar. Specialist area: corporate social responsibility and medicines policy and safety issues. Charles is concerned about the "broader picture" of prescribing and the influences of pharmaceutical companies on prescribing regulations and practices.
Professor Heather Ashton. Emeritus Professor of Clinical Psychopharmacology. Heather is now in her 70s and has been a researcher and clinician for many years, running a benzodiazepine withdrawal clinic for 12 years. She is one of the few people involved in research in the area of benzodiazepine withdrawal.
Pam Armstrong. Council for Involuntary Tranquilliser Addiction (CITA). Co-founder of this organization providing benzodiazepine clinics and treatment. See also Pam's Back to Life web site.
Anna de Jonge. Patients Rights' Advocacy in New Zealand. Anna has spent many years advocating for patients' rights in respect to psychiatric drugs and providing advocacy.
Ian Singleton. Bristol and District Tranquilliser Project. Ian was assisted through withdrawal by the B&DTP and has since devoted his time to building up the organization and obtaining funding.
Dr Reg Peart. VOT. An atomic physicist, Reg was prescribed benzodiazepines for vertigo and endured an enormous amount of pain and suffering as a result, including a psychiatric diagnosis and over 30 Electro-Convulsive Treatments. In 1992, Reg formed VOT and was responsible for leading a group of litigants against drug companies in the UK. The group is currently taking its case before the European Court of Human Rights where the UK government is being sued for denial of the right to a fair trial.
Susan Bibby. Benzact. Following personal experience of benzodiazepine dependence, Susan established Benzact to represent the concerns of parents and children affected by benzodiazepines. Two television documentaries have been made on this issue.
Professor Stefan Borg. Associate Professor at the Karolinska Institute and Head of the Centre for Dependency Disorders at Karolinska and St. Goran's Hospitals. Professor Borg has undertaken research into benzodiazepine withdrawal and operates a clinic in Sweden.
Dr. Nicholas Sievewright. Consultant Psychiatrist in Substance Misuse in Sheffield. His special area of interest and research is in addictions generally and benzodiazepine use by illicit drug users.
Felicity Bielovitch. Author and recovered benzodiazepine user. Felicity has received a number of Awards in South Africa for her work in raising awareness about benzodiazepines.
Joan Gadsby. Author and recovered benzodiazepine user. Joan is committed to developing a multinational awareness campaign on appropriate prescription drug use.
Professor David Cohen. Professor and Chair of the Doctoral Program in Social Work at Florida International University, Miami, USA) His speciality is in adverse effects of psychiatric drugs and social determinants of psychiatric drug use.
Legal Issues: The litigants in the UK obtained legal aid for what would be the largest personal injury action ever. 1000 cases were prepared and a further 10,000 were waiting.
Because of this, a judge was appointed to oversee the case and ensure that it moved forward. What actually happened was that legal aid funding was eventually withdrawn.
The drug companies' tactics (Roche and Wyeth) increased the cost to the government. The main issue was that the defendants (Roche & Wyeth) challenged the plaintiffs' application for sampling, rather than reviewing the evidence in every single case. The judge upheld the objection of the defendants which effectively meant examination of every case which was not affordable.
Benzodiazepine Effects on Babies: More research is needed on withdrawal management for babies whose mothers have taken high doses of benzodiazepines during pregnancy, and on appropriate reduction regimes for mothers during pregnancy. People associated with Benzact in the UK are convinced that many children of benzodiazepine using mothers have learning and behavioural problems. Cause and effect is notoriously difficult to establish with these sorts of problems in children, and more research is need.
Cognitive Impairment with Long Term Benzodiazepine Use: Some studies have shown long lasting cognitive deficits in long term users with poor performance on cognitive tests, and many long term benzodiazepine users at the Conference expressed concern over cognitive impairment. Professor Ashton states, however, that receptor changes due to the benzodiazepines are functional and not structural and therefore should revert to normal over time and that there is no clear evidence of long lasting damage to the brain. The time taken to return to normal, however, could be a number of years in some cases. There may be some benefit in providing cognitive training to clients attending at TRANX, and this may be something we can incorporate in our counselling assessment.
Suicide/Attempted Suicide: The Conference provided a reminder of the number of people dependent on benzodiazepines who become so despairing that they attempt suicide. This is anecdotal as these deaths would not be recorded as being related to benzodiazepine use. This is something the counselling staff are well aware of at TRANX. During the period of time when data was collected for Tracy Garvin's research, all participating clients filled in the Beck depression inventory. The results showed that over 40% of attending clients rated as having severe depression.
Council for Involuntary Tranquilliser Addiction (CITA) Program in GP Practices: The CITA organization sounded very similar to TRANX in many ways. They have commenced a new program which is funded by their regional health boards. A counsellor is stationed at a GP's surgery and all current patients taking benzodiazepines are referred to the counsellor, with the aim of coming off the benzodiazepines. If the patient does not wish to go to the counsellor, the GP will not continue writing their benzodiazepine prescription. The CITA staff said that although many patients are initially unwilling, once the effects of the benzodiazepines have been explained to them, they are more disposed to participate in the program.
Prescribing of Zopiclone: 2000 in 1993 to 2.25 million in 1999. There is a high prescribing of the sedative Zopiclone (Imovane) in the UK which has not occurred in Australia.
Prolonged Withdrawal Syndrome: Professor Stefan Borg is continuing research into the use of Flumazenil (benzodiazepine antagonist) in assisting to alleviate withdrawal for long term benzodiazepine users experiencing protracted withdrawal. (Protracted withdrawal is defined as still having symptoms after one year drug free). The drug has shown potential benefit but the research is in the early stages and the drug is only able to be given intravenously. Flumazenil can also be useful to discriminate between benzodiazepine related symptoms and other problems, for example, anxiety.
Gwenda Cannard is the Director and co-founder of TRANX (Tranquilliser Recovery and New Existence) Inc. Established in 1986, TRANX is the only organisation of its kind in Australia and provides information, advocacy and counselling for tranquilliser and analgesic use and dependency. In 1997, TRANX initiated a major new program area, PADA, the Panic and Anxiety Disorders Assistance Treatment Centre.
Gwenda has a nursing and teaching background and has post graduate qualifications in drug dependency. Gwenda has extensive experience in the drug and alcohol treatment field and is past President of the peak body, the VAADA (Victorian Alcohol and Drug Association).
She remains concerned about the inappropriate prescribing of benzodiazepines, particularly to women, migrant people and older people.
The importance of providing accurate drug information to consumers is another issue concern to Gwenda and she is a past member of the steering committee of the Pharmaceuticals Project of the Consumer's Health Forum of Australia.
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