Annemarie Ward tells the story of the groundbreaking ‘You Keep Talking, We Keep Dying’ campaign.
July 2019, the phone rings at 11.30pm on a Sunday and it’s Natalie Mclean. I had met Natalie briefly at an ACE-Aware Nation event in Glasgow where the air was filled with excitement and the possibility of paradigm change, but our chat that day was about how much more needed to be done, especially in the recovery community on the ground.
A few days later Scotland released another set of heart-breaking statistics of those friends and family we had lost to drug deaths. There was of course the usual commentary from the leadership, the usual talk of aging cohorts, the ‘Trainspotting generation’ and how basically it was a tragic but predictable trajectory. This abject acceptance from those supposed to be in charge of our care had always been abhorrent to me, but now I knew I could no longer accept this preordained narrative. Included in those 2018 statistics were people I had known and loved who had never had the opportunity to receive care that may have helped them recover.
Back to that phone call. Natalie was in deep despair. She had just lost the sixth member of her family to a drug death and her impassioned call for help was to set FAVOR (Faces & Voices of Recovery) on the course of one of the UK addiction field’s most successful advocacy campaigns.
IT STARTED WITH A VIGIL
Having organised UK recovery walks and conferences over the years I suggested we hold a candle-lit vigil to commemorate those we had lost. It seemed like a ridiculously inadequate thing to do but we went ahead, and a few days later more than 600 people showed up in George Square, Glasgow. We knew as soon as we announced it on social media that we were holding an event that was way bigger than any of us. We quickly threw together some t-shirts and wrist bands with the hashtag #youkeeptalkingwekeepdying and all we had to do that night was pass the microphone to those who wanted to speak.
What happened was an outpouring of grief. Mothers, fathers, sons, daughters, husbands and wives all spoke about their loved ones who had passed. But besides the grief, there was an undercurrent of anger. Anger that their loved ones hadn’t been given any real care and that they had been failed by a treatment system that they felt not only couldn’t help, but didn’t fundamentally understand what it takes for recovery to be initiated and sustained.
As we were packing up to leave many of the women who had lost their children pleaded with me to continue to speak out and host another event so they could bring friends and family. I could see with crystal clarity that the big organisations charged with our care and leadership were either asleep at the wheel or numb to the ongoing trauma we were facing in our poorest communities. We were propelled again by grief and exasperation to organise another of what we were now calling ‘gatherings’. Our second event followed the same format as the first, and more than 1,200 friends and family of those affected gathered. This time we were more organised. We had invited the press and several local and national politicians. We were amazed at the amount of people and how desperate they were for us to continue to organise and do something – but what?
A steering committee was formed and it was decided that we would create a Scottish-specific arm of FAVOR UK to take the work and campaign forward. We were now campaigning with specific outcomes in mind, such as 50 per cent representation of living and lived experience on all decision-making committees, including the main one in Scotland tasked with reducing drug deaths. Phoenix Futures gave us a weekly meeting space, extra volunteers and emotional support that lasted the whole campaign, while Monica Lennon, the opposition party’s health minister, had now established a relationship with FAVOR Scotland built on trust and the shared grief of losing her father to alcoholism.
In partnership with Monica, we held a roundtable event at the Scottish Parliament that gave us an opportunity to invite long-term members of the recovery community, many of whom had worked for more than two decades in residential rehab services where investment was now on a shoestring. The amount of media at our fourth gathering almost outnumbered the community members. Three of the main television stations, many broadsheet newspapers plus the more widely read ‘red tops’ were in attendance.
Not only did the press get fully behind us but their reporting was now focused on highlighting the lack of investment in helping people get well. Over the next nine months we continued to have monthly gatherings, and in particular Scotland’s most widely read newspaper the Daily Record really threw their support behind us with almost weekly articles.
The UK and Scottish governments both held summits that were nothing more than political posturing, and throughout this time the limited numbers of funded rehab places in Scotland started to become apparent. We had estimated that there were around 70 funded places but this estimate triggered the Scottish government to do their own inquiry. It showed that while Scotland’s rehab beds numbered around 365 only an estimated 26 beds were actually funded and accessible to ordinary people via alcohol and drug partnerships.
The usual ‘rehab doesn’t work for everyone’ arguments were muted now that the government’s own figures showed how few people were actually getting access to this life-saving treatment. Our report also highlighted other vital life-saving actions that needed to be invested in if we wanted to see drug deaths start to decline, and that it was no longer acceptable to pitch one potential lifesaving pathway against another. The focus of our campaign, to advocate for balanced investment across all evidence-based treatments, was now being heard very clearly and without prejudice by the press.
When COVID hit we moved our monthly gatherings online. The politicians stayed engaged and more and more people contributed to the call to action for real change and investment. Each of our events has now been viewed over a thousand times and some as many as 3,000 which widened the conversation.
A year after the first gathering Natalie and I were able to have an online event where we reflected on the campaign. It showed us how far we had come, and more importantly that we must carry on and not give up. Relentlessly we continued to hold monthly events, engage with politicians and feed the press our stories and information. It felt like there was no end in sight and then finally came the breakthrough we had all been praying and working for.
In April we saw the biggest injection of funding in the history of Scotland’s addiction field, worth £50m a year. It includes an annual £20m to offer residential rehab to every person who asks for it. This money will not only help save lives, it is also an acknowledgement from the Scottish Government that they hadn’t done enough, and it was shortly followed by a £148m announcement from the UK government, £80m of which is for tier 4 services in England.
Our job now is to remain vigilant to the gatekeeping, bed blocking and other barriers that prevent us from getting access and choice of treatment. That work has included working in partnership with Shelter Scotland to make sure that no one has to choose between their health and their home, and to make sure that the complacency and handwringing of earlier years never happened again.
We don’t always have the capacity to reflect or even to tell you about the work we are involved in, and there is still so much to do before people with addiction disorders are treated fairly and with compassion. We are currently involved in developing legislative work to make sure that no person in the UK will ever have to fight for treatment.
One of most important things that this campaign has shown us is our value as recovering people. None of this would have happened without the support, persistence and tenacity of the recovery community. Over the last 12 years we have led the community into becoming more visible and vocal across the UK – that is undeniable, but we hope that through this campaign we can help the recovery community and the treatment community see how valuable and vital our contribution is. The time for change is well overdue.
We have been asked by too many people to write up this period of our work to ignore doing it. In our very small way this is a snapshot of a significant piece of history in the addiction field. It is written by those who laid the foundations and planning of something different to help people whose suffering demanded not only that their voice be heard, but that they have access to the same resources as the wealthy to help them get well.