Episode 3 – World Benzodiazepine Awareness Day

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This week, we have a special episode to join in with the events being held for World Benzodiazepine Awareness Day.

World Benzodiazepine Awareness Day seeks to raise global awareness of iatrogenic benzodiazepine dependence, the dangers of its adverse effects and the associated withdrawal syndrome, which can last for years.

To give some context around the issues with Benzodiazepines, we have three interviews in this episode.

 

Firstly we talk to Professor Malcolm Lader who is Emeritus Professor of Psychiatry from Kings College London and is globally recognised as an expert on Benzodiazepines. Following that we talk with Jocelyn Pedersen. Jocelyn is a US based campaigner who shares her own experiences with Benzodiazepines and talks also about her views of the medical response to the issues of dependance and iatrogenic harm.

Finally, we talk to Barry Haslam. Barry is a veteran UK campaigner who shares his experiences and also what we should be doing to help those dependant or damaged from use of these medications. Barry has been instrumental in raising awareness and taking action for last 30 years and is well known in political and medical circles.



 

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Malcolm Lader

Interview 1, Professor Malcolm Lader

In this interview we discuss:

  • Professor Lader’s training in medicine and how he specialised in psychopharmacology and psychiatry
  • That he went on to become involved in research, particularly around tranquilliser dependance and adverse effects
  • How Benzodiazepines were created in the 1950s, replacing Barbiturates because they were generally safer in overdose
  • That the first Benzodiazepine created was Librium (Chlordiazepoxide) soon followed by Valium (Diazepam)
  • That for a time, Valium was the most widely prescribed drug on the planet
  • That the advantages are that Benzodiazepines are relatively safe in overdose but they can result in dependance (likely a 1 in three chance) at therapeutic doses
  • That by 1975, Professor Lader’s Addiction Research Unit at the Maudsley hospital in London were becoming increasingly concerned by the number of people who were being referred to them for specialist help
  • How this led to Professor Lader’s famous quote on a BBC Radio 4 interview that it was “easier to withdraw people from Heroin than from Benzodiazepines”
  • That Opioid withdrawal caused an acute, very unpleasant withdrawal experience but Benzodiazepines caused a protracted withdrawal that was actually more difficult for many people to deal with
  • How they were left with patients who had successfully withdrawn from Opioids like Heroin but were still having trouble with the Benzodiazepines like Ativan
  • How the British Medical Association have only recently become engaged in the issues of dependance and withdrawal to give advice to their members (General Practitioners)
  • That the regulators don’t have sufficient influence to get doctors to prescribe Benzodiazepines in a more responsible way
  • That much of the long term use of psychiatric medications comes down to lack of monitoring of patients by doctors
  • That there have been cases where long term prescribing of Benzodiazepines has been seen to be negligent on the doctors part and that this has led to some out of court settlements
  • That the treatment of dependance is not simple or straight forward so it is much better to educate GPs upfront to intervene before people have the chance to become dependant
  • How we are now repeating some of the same mistakes made with Benzodiazepine prescribing with Opioid analgesics and antidepressants too
  • That the increase in prescribing of psychiatric drugs is partly down to greater recognition of mental health difficulties but also that we do not have enough people trained in non pharmacological interventions
  • That Pharmacists can play a pivotal role in monitoring, advising and supporting patients
  • How Professor Lader became involved in the educational resource the Lader-Ashton organisation
  • That Professor Lader welcomes this second Benzodiazepine Awareness Day because knowledge and education about the related issues is important
  • That people who are currently taking a Benzodiazepine should make themselves aware of the risks and benefits and talk to their prescriber if they are concerned
  • The concerns around the lack of research in this area and that we need ring fenced money to better understand how best to help and support dependant patients
  • That the prediction of the efficacy of psychiatric drugs from biochemistry to animal experiments to human treatment is very poor, so the Pharmaceutical industry is losing interest in psychotropic drugs
  • That psychiatric drugs largely offer symptomatic relief and so their usefulness is limited and we also need to focus on the safety issues
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Jocelyn Pedersen

 

Interview 2, Jocelyn Pedersen

In this interview we discuss:

  • How Jocelyn first came into contact with benzodiazepines, having had family illness difficulties and finding that she suffered with insomnia but wanting something that was safe to take while pregnant
  • How her doctor recommended the nonbenzodiazepine tranquilliser Ambien (Zolpiden) which Jocelyn used for less than a week because she felt that it was affecting the baby
  • How Jocelyn, after stopping the Ambien even after such a short usage period, found that she couldn’t sleep, couldn’t eat or even do basic things like reading or watching TV
  • That Jocelyn, in trying to explain the wide range of symptoms she was experiencing had a range of physical examinations and tests that all came back negative
  • That doctors explained away her constellation of symptoms as postpartum depression
  • How doctors then prescribed the Benzodiazepine Ativan at 1mg and Effexor, telling her to only take the Ativan until the Effexor ‘kicked in’
  • That, for Jocelyn, the Effexor never did ‘kick in’ because she was suffering Benzodiazepine withdrawal
  • That upon doubling the dose of Ativan, Jocelyn felt better but she knew that it was only meant for short term use
  • How she found that every time she tried to reduce, even by a small amount like 0.25mg, she was unable to function
  • How three years later, Jocelyn decided it was time to get off the Ativan because she was suffering other health issues
  • How Jocelyn realised that Benzodiazepines like Ativan are teratogens and dangerous in the first months of pregnancy and that being pregnant, Jocelyn had no option but to withdraw
  • That on starting her tapering, Jocelyn was unable to do much else but writhe on the floor in agony, describing even a small reduction as “descending into hell”
  • How Jocelyn’s husband, having found online support groups like Benzo.org.uk realised that what was happening was Benzo withdrawal
  • That Jocelyn, then suffering a miscarriage, ended up in the ER, begging the ER doctor to switch her over to Valium
  • That Jocelyn then spent the next year and a half tapering from Valium
  • How Jocelyn then started to join online support groups, learning how to do a proper taper like that recommended by Professor Heather Ashton
  • That it is very difficult to communicate to friends and family members what is happening, with many assuming it is merely depression or anxiety
  • That it is important to avoid the use of addiction terminology, because people struggling with withdrawal have more in common with those that have a traumatic brain injury or neurological damage
  • That often the only thing between someone and even more suffering is the Benzodiazepine, so it’s not as simple as just wanting to get off
  • That it has been just over two years since Jocelyn finished her taper and there has been considerable improvement but there are still lingering effects
  • That changing her diet made a significant difference to Jocelyn’s health and wellbeing
  • How Jocelyn became involved with campaigning and started her own YouTube channel BenzoBrains
  • How she wanted to be able to add some validity when approaching legislators and lawyers so she founded the Benzodiazepine Information Coalition, a non profit organisation
  • How these and other groups help to educate medical professionals, particularly in terms of avoiding addiction terminology but also to provide guidance on the right approach to take with someone who is dependant
  • How Jocelyn observes some mistakes in how doctors treat those who are iatrogenically harmed, particularly doctors who suddenly stop prescribing because they are worried about the legal aspects, this can leave a dependant person in a very difficult place
  • Secondly while doctors may be cautious about Benzodiazepines, they still readily prescribe other psychiatric medications and even recommend them to treat Benzodiazepine withdrawal effects
  • That a total ban or strict regulation and control of prescribing is an approach which would harm many people who are dependant
  • That what patients need is the proper information to help them successfully and safely get off the drugs
  • That people taking Benzodiazepines shouldn’t be scared by the horror stories but should take time to educate themselves and to accept that the path to being drug free might not be easy but healing is a journey and takes time
  • Jocelyn’s involvement with the forthcoming documentary film: As Prescribed directed by Holly Hardman
  • That much of the funding in this area of research goes to addiction services rather than specifically to help someone who is dependant
  • The difficulty that some people have in accepting that they may be dependant on a prescribed medication
  • The disempowering nature of the message that someone has to take a medication for life and that they have a chronic health condition
  • The message that Jocelyn has for people is that they are capable of more than they know and they can get through the experiences of withdrawal and be stronger for it
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Barry Haslam

Interview 3, Barry Haslam

In this interview we discuss:

  • How Barry came into contact with Benzodiazepines in 1976 when he had a stress related breakdown due to the combined pressure of working full time  and studying
  • That Barry has no memory of the period 1976 to 1986 and he has had to piece together what happened from medical records and the recollections of family members
  • How a doctor put Barry firstly on Librium (Chlordiazepoxide), followed by a number of antidepressants and also Valium for a time
  • How Barry ended up on a huge dose of 30mg of Ativan (Lorazepam) per day
  • This happened because Barry was experiencing withdrawal effects because of tolerance to the drugs but the doctors didn’t recognise these effects so increased the dosage in response
  • That Barry suffered such powerful daily headaches that he ended up taking 12 opiate painkillers per day in addition to the Ativan
  • That in December 1985, Barry, suffering uncharacteristic aggression, felt that enough was enough and he had to quit the drugs
  • That he had some psychological support when he first started to withdraw but for the majority of the time he did it alone
  • How he dropped from 30mg to 2mg of Ativan in 9 months as well as stopping the opiate painkillers
  • For the last period he transferred to Valium (Diazepam) which took 5 months to come off
  • He did this with no guidance and very little support because the doctors had abandoned him
  • How he experienced many unpleasant physical symptoms including violent daily vomiting, hallucinations, feeling of things crawling under his skin and lost half of his bodyweight
  • How Barry feels that it was the love and support of his wife and family that got him through that 15 months of hell
  • That there is virtually nowhere for people struggling with withdrawal to go to get help and support
  • That these issues receive far less attention and funding than alcohol or nicotine dependance
  • That Barry feels that the health services are too frightened of litigation and that prevents them from directly addressing theses issues
  • How Barry joined an organisation called Oldham Tranx, a peer support group run by drug dependant patients and how Barry became chairman
  • How the local paper, the Oldham Chronicle supported Barry in his campaigning
  • How Addiction Dependency Solutions (now called One Recovery) started to help people in 2004 and is the first NHS funded facility in the UK
  • That we should get Government policy makers in the Department of Health to issue guidance to all local Clinical Commissioning Groups to ensure that similar services are set up across the country and in other parts of the world too
  • We should introduce peer support groups based on the model already in place in Oldham
  • How Professor Heather Ashton ran a withdrawal clinic in Newcastle for twelve years and learned a great deal from the patients experiences
  • That putting these services in place would save lives, Barry estimates that in the UK alone 20,000 lives have been lost since 1960 due to suicide, poisoning and road traffic accidents related to Benzodiazepine use
  • How Barry missed out on his daughters growing up because of the memory loss caused by the drugs up but now can enjoy seeing his three grandchildren grow into adults
  • How Barry has met so many good people in the community of those who needed help and support and that gives him the drive to continue campaigning
  • That even many years after the drugs have been stopped, they can continue to cause a range of health problems
  • That we need hard, clinical evidence of the damage cause by Benzodiazepine drugs as part of the evidence base for future legislative action
  • That this is national problem and needs to be tackled by national governments
  • That dependant patients should continue to put their experience back into the system and that will help society
  • Barry’s wish to have recognised the selfless and tireless work of Professor Heather Ashton including her withdrawal protocols that are used worldwide and that the British Government have never formally recognised her great service and the lives that she saved
  • That every doctors surgery should have a copy of Professor Asthon’s Benzodiazepine withdrawal manual
  • That Barry wants to pay tribute to all of those who have taken their own lives because of Benzodiazepines, either because the horrors of withdrawal or the increased suicidal thinking

Relevant Links:

World Benzodiazepine Awareness Day

The Lader-Ashton organisation

Benzo Brains

Benzodiazepine Information Coalition

Benzo.org.uk

As Prescribed directed by Holly Hardman

Addiction Dependancy Solutions

Professor Heather Ashton’s manual

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To get in touch with us email: podcasts@madinamerica.com

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