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Many Thanks to Claire in the UK for Her Guest Blog

In “As Prescribed” Holly Hardman has taken on an almost impossible task – to communicate the incommunicable; namely the lived experience of the symptoms which accompany being on and discontinuing from prescribed benzodiazepine medication and the devastating fallout they can cause.

She does this against a backdrop of many documentaries that came before hers, including ITV’s “Ada versus Ativan” which came out in 1988 and the BBC Panorama “The Tranquiliser Trap” in 2001. Most of these older films failed to grasp the truth of the story, leaving the viewer with the sense that these people must have a psychological problem or character weakness to have such difficulty withdrawing from a benzodiazepine. By telling the story from the perspective of lived-experience, showing the years and years of endless suffering, and the impact on real people’s lives using their own words, Holly is rightly putting the narrative in the hands of the sufferers rather than the power structures that have failed to properly address the benzodiazepine problem for decades. And it’s a problem which former British Prime Minister David Cameron, while still in office, rightly described as a “national scandal.” Holly’s film goes further. This is an international iatrogenic disaster.

It is long overdue that the story of the victims of benzodiazepines is put in the hands of those that are suffering or who have suffered, and not in the hands of detached and ill-informed health practitioners or journalists using their limited perception to report on the problem and not realizing what the problem actually is. The real essence of the media story, which the media have missed time after time, is that this is not a problem about people who have a psychological need to continue taking a tablet which they can’t stop because of a psychological issue, or who are misusing or abusing their medication. It is a problem of physiological dependence and of the physical and neurological symptoms which are so completely overwhelming, so numerous, so debilitating, so isolating, and so inexplicable to others — symptoms that can cause death, dementia, family breakdown, and homelessness with whole lives devastated by one pharma-created substance.

When trying to convey the benzodiazepine illness experience of GABA-receptor downregulation to other people, it is often hard to convey the variability of symptoms between people — i.e. that some people can be affected to the point of being bedbound for very many years, while for other people it is much less severe. It is also hard to convey the sheer number of symptoms that happen all at the same time and for so very many years. Indeed, the duration seems unbelievable, even to those who have experienced it, as does the enormous range of neurological symptoms that occur. Holly tackles this variation head on and charts the stories of people very differently affected, with varied ages and backgrounds and brings all the strands together in a compelling piece of work.

From a personal perspective, I remember seeing the trailer for “As Prescribed” when I was just starting my taper. I had an idea of what lay in store for me. I knew it would be terrifying and I knew it would be harrowing. I knew it would be unsupported, misunderstood by medical professionals, and I knew that the media were still not reporting it in a way that was helpful to anyone. But Holly’s film promised something different. Knowing that the film was being made gave me tremendous strength at the beginning of my taper. Although I would not be understood or supported by the medical community or by any journalistic coverage, one day there would be a hope of being understood, of somebody putting a film project together that would actually tell our stories. Because I was campaigning alongside many of the people in the film as it was being made, it really is extraordinary to look back on what life was like back then. To this day I still find the experience incommunicable. I rarely try to communicate it or its ramifications. Remembering can be difficult. I had been unknowingly suffering from tolerance withdrawal since 2002, only one week into taking my first doses of a benzodiazepine. Twenty years of my life were wrecked by these tablets, so for me this film is very important, and I’m sure it will be equally important to many thousands of others affected by these life-destroying drugs.

While I was campaigning, whenever there was any news or any kind of newspaper, radio, TV, or short film coverage, I would always feel a sense of trepidation; although the coverage was needed and very welcome (in fact desperately needed and desperately welcome), there was always the worry that the story would be one more in the inaccurate, addiction-obsessed lexicon. Time and time again journalists would approach us with the same preconceived ideas about what the illness was, and it was absolutely exhausting to have to refer these people time after time to the relevant documents at the Benzodiazepine Information Coalition and World Benzodiazepine Awareness Day sites, not to mention all the other survivor blogs out there, and to point out why labelling this problem as an addiction was incorrect, inaccurate, offensive, and potentially deadly if relied upon for actual medical treatment.

Even when I consulted the British legal system about the difference between physical dependence and addiction, counsel came back with the opinion that there was no such distinction in common usage and therefore the distinction could not be upheld in law. With so little recourse in law to hold the pharmaceutical industry accountable for what they have done, the media narrative seemed absolutely vital, representing our only hope for change. So it was beyond disheartening when, despite individual journalists doing a superb job of investigation the story, those same journalists who had spoken to the survivors who were willing to share their stories, were then undermined by editors who had not spoken to the victims themselves and who insisted on putting exploitative, sensational, and inaccurate headlines that further stigmatised the victims and introduced the story in a manner that alienated the very people we were hoping to reach. As a result, far fewer potential victims we wanted to warn ever heard the message. The editors and sub-editors continued to pump out inaccurate language and preconceptions in their headlines. It is traumatic for us as individuals and as a community to have our story told badly or mis-told. Worse, it can lead to inappropriate treatment and people dying.

Holly Hardman has achieved an affecting piece of work that shows a wrong that needs righting, a situation that needs a resolution, and it shows it very movingly without being sensationalist in the slightest. This is a very difficult balance to achieve, but Holly Hardman has managed to do this in “As Prescribed.” Holly put together this incredible piece of work even when ill herself. I hope that, as a result, this subject of benzodiazepine harm finally gets the attention it deserves in the way it deserves, and that change can come as a result.

It has been clear for some time that there has been a desperate need for the story of the benzodiazepine scandal to be accurately told. It is a medical nightmare that has harmed so many millions of people worldwide, with many having gone to their deaths not knowing the reason for their ill health, increased anxiety, early-onset dementia, familial breakdown, personal collapse, or even death. And it is clear, after so many attempts at telling that story, that the only people who can really tell it accurately are those who have lived it themselves.

In the same way that so many of us have had to be our own doctors to save our own lives through this ordeal with no medical backup or understanding, now it falls again on the community to be its own journalist and tell its own story. The person who has made that happen is Holly Hardman. This is why “As Prescribed” is so ground-breaking. This film sheds a completely new light on the way these illness-inducing drugs are prescribed. The film makes clear that there is a crucial need for change in the culture of prescribing, and soon.

​Written by Claire Violet Hanley