The You Keep Talking We Keep Dying Campaign
Annemarie Ward, Faces & Voices of Recovery UK
July 2019, Sunday 11.30 pm the phone rings, its Natalie Mclean. I had met Natalie briefly at the Ace aware nation event in Glasgow where the much-loved & inspiring Gabor Mate was presenting later that day. The air was filled with excitement & the possibility & chat of paradigm change. That hope watching the royal concert hall fill up with 5000 professionals to learn more about healing traumas effects was infectious & inspiring but our chat with each other 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 & family we had lost to drug deaths. There was of course the usual commentary from the leadership in Scotland. Handwringing about what they described as Inevitable deaths , the usual talk of aging cohorts, trainspotting generation's and how basically it was a tragic but completely foreseeable & predictable trajectory. This abject acceptance from those in positions 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 repetitive narrative any longer. Included in those 2018 statistics were people I had known & loved too 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. It was Sunday night, it was late, she had just lost the 6th member of her family to a drug death & her impassioned call for help was to set the FAVOR on the course of the UK addiction fields most successful advocacy campaign ever.
Sharing in Natalie's pain & grief that night inspired us both to think about what we could do. Having organised the UK Recovery Walks & conferences over the years I suggested we hold a candle light vigil in the city centre to commentate those we had lost. It seemed like a ridiculously inadequate thing to do but we went ahead, and a few days later over 600 people showed up at 10pm on a summer's night in George Square, Glasgow. We knew as soon as we announced on social media that we were holding an event that something way bigger than any of us was happening. So many people came forward to help, gazebos with tea coffee biscuits & hugs, a sounds system, we quickly threw together some t-shirts & wrist bands with the hashtag #youkeeptalkinwekeepdying and all we had to do that night was pass the microphone to those who wanted to speak.
Grief, Despair, Anger
What happened was an outpouring of grief. Mothers, fathers, sons, daughters, husbands, and wife's all spoke about their loved ones who had passed. It was incredibly emotional, powerful & moving. Beside the grief people expressed, there was also an undercurrent of anger. Anger that their loved ones hadn't been given any real care & that they have 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 & too host another event during the day that they could bring friends & family too. My thinking at the time was I wasn't sure if my heart could take another event like that, but International overdose awareness day would be happening in a few weeks and there would be many events put on by the established Scottish organisations for them to take part in, after all we had just announced to the world the highest overdose deaths in Europe, so surely there would be many commemoration events on during that world recognised specially appointed day.
August 31st 2019 (International overdose Awareness day) fell on a Saturday, maybe this was why there was not one single event organised. Much of our work had been in England up until this point for a variety of reasons but this brought my focus sharply into Scotland. I could see with crystal clarity the big organisations charged with our care & leadership were either complacently asleep at the wheel or numb to the ongoing trauma we were facing in our poorest communities. We were propelled again by grief & exasperation to organise another what we were now calling gatherings-- Our second event followed the same format as the first, allowing everyone who wanted to speak the opportunity to do so whilst everyone else stood by & respectfully listened. Over 1200 friends & family of those affected gathered again in a corner of George square on the day Jeremy Corbyn & his supporters gathered in the other corner. This time we were more organised. We had invited the press & several local & national politicians. We were amazed at the amount of people & how desperate they were for us to continue to organise & do something - but what?
A steering committee was formed & it was decided that we would create a Scottish specific arm of FAVORUK to take the work & campaign forward. We agreed that, we now had to take the gatherings into the communities where people were dying to really galvanise & mobilise support. Hearing the call from our members, FAVOR UK board of Directors gave me permission to focus the work of the charity on building on the campaign for the next two years. This marked a significant change of direction for us as a charity that now in 2021 we are only starting to solidify & develop.
Enough is Enough
Our 3rd monthly gathering was held in Maryhill. We were now campaigning with specific outcomes in mind, such as 50% representation of living & lived experience on all decision-making committees, including the main one in Scotland tasked with reducing the drug deaths. Phoenix Futures gave us a weekly meeting space, extra volunteers & emotional support that lasted the whole campaign. Monica Lennon, the opposition party's health minister had now established a relationship with FAVOR Scotland built on trust & the shared grief of losing her father to alcoholism. Two things happened in months to come. In partnership with Monica, we held a round table event at the Scottish parliament that gave us an opportunity to invite long-term members of the recovery community, many who had worked in residential rehab services for over 2 decades where investment had not only declined it was now operating on a shoe string. And we saw the then minister in charge Joe Fitzpatrick agree there should be more representation on the task force but instead of coming to the organisation who had campaigned for those seats, (us) he went instead to a government steered & funded recovery organisation. We sadly noted the tactic & missed opportunity for negotiation & carried on campaigning focusing on putting into a report the 23 recommendations that had come to light from our third gathering. The recommendations had come from a mixture of grieving loved ones,professional peers, academics & recovering people all who were saying difficult but honest truths and all of whom felt they were being resolutely ignored. Again with determination & downright stubbornness we refused to let their voices go unheard & presented their report at our 4th gathering to a local sympathetic MP Bob Doris who assured us and staggeringly many of the UKs press that day who showed up in Possilpark that it would be taken seriously by the then minister in charge Joe Fitzpatrick. That day in the housing scheme Possilpark marked a serious turning point in the campaign.
The Press Had Enough Too.
The amount of press there that day at our 4th gathering almost outnumbered the community members. 3 of the main television stations BBC, STV & Chanel 4, many of the broadsheet newspaper's including The Herald, Guardian & the Times The Scotsman plus the more widely read red tops here in Scotland, the Daily Record, The evening Times & the Sun were in attendance. The press stayed for the full 3-hour event where they listened to people's stories of hope, about how they had recovered because of the chance they had had in rehab, the love they had been able to receive & give again in recovery & ofcourse the loss & grief of many who had not had the opportunity for their loved one to go to rehab despite many requests over decades of being in so called treatment. Not only did the press get fully behind us but their reporting was now focused across the UK highlighting the imbalance we had laid out so clearly for them to see in the lack of investment in helping people get well. Over the next 9 months we continued to have monthly gatherings that the press reported on. We walked a fine balance of finding people & recommending organisations willing to tell their story to the press. In particular Scotland's most widely read newspaper The Daily Record really threw their considerable support behind us with almost weekly articles that covered the breadth of the problem, raising the debate about what other countries have done to help and telling stories of people's lives being saved & recovery journeys being used to highlight the connection between trauma & addiction. This relentless campaign reporting from the journalist Mark McGivern gave not only momentum & value but it encouraged us to know that even if no one with the power to change wanted to listen to us, we were certainly getting a fair hearing from the people of Scotland. We could also see this reporting was informing other journalist across the UK & more & more we asked to contribute our voice to articles, national TV & radio debates in England Wales & Ireland.?
Posturing Rhetoric & Farce
The UK & Scottish government's both held summits that were nothing more than political posturing. We worked closely with the press to get our stories heard ensuring they were full of nuance & understanding, educating an often-ignorant public to the failings within the treatment system & raising the debate about the nature of the those suffering & dying mainly coming from our poorest communities. Throughout this time also the limited numbers of actual funded rehab places to help people get well in Scotland started to be come apparent. We had estimated that there were around 70 funded places but this estimate triggered the Scottish government to do their own enquiry that showed in actual fact that Scotland's rehab beds numbered around 365 but of that number only an estimated 26 beds were actually funded & accessible to ordinary people in Scotland via the government appointed alcohol & drug partnerships. Over 100 of those beds were not available to people from Scotland & self-funding contributed over a third (36.8%) of placements, around a quarter (27.4%) were funded by Social Security payments and charitable funding, while private insurance was used to fund around one in five (22.0%) places. The actual number of funded places from the Alcohol and Drug Partnerships (ADPs) funded little more than a tenth of the 265 beds available, (22) that could be accounted for. Only 22 funded beds for all of Scotland's people was nothing short of catastrophic for the politicians in charge, and highlighted Scotland's leadership in the addiction field was well and truly asleep at the wheel.
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 2 other vital lifesaving actions that needed to be invested in if we wanted to see the drug deaths start to decline & that it was no longer acceptable to pitch one potential lifesaving/giving pathway against the other in a fight for resources & investment. The focus of our campaign to advocate for balanced investment across all evidence-based treatments that had been proven to save & give people their life's back was now being heard very clearly, with understanding & without prejudice by the press. We were hoping that those in power could hear it too. Our courage in telling our stories was starting to give other organisations & individual leadership figures who had previously been threatened or unsure of our aims, tentatively started to show courage of their own adding their voice occasionally to conversations in the national press. Unfortunately, most of the leadership continued to ignore & attempt to muddy the water, some even going as far to promote the idea that the very false dichotomy, of harm reduction Versus abstinence we set up FAVOR UK to eradicate was what we were attempting to promote. There were many occasions throughout the campaign where our members felt gaslit & believed they were being deliberately misconstrued. Our strapline as an organisation since 2009 has always been there are many pathways to recovery & all are a cause for celebration. These attacks I believe were probably borne of ignorance rather than malice. I was also reminded of the very real need as a human being to belong & identify with a tribe, however we emphasised that regardless of your tribe there are more issues that need fixed in the addiction field where we can unite than those that divide, particularly around investment of resources to give us every opportunity to find a path that suits us.
When Covid hit we moved our monthly gatherings online. The politicians stayed engaged & more & more people contributed to the call to action for real change & investment from across the UK. Using the technology allowed more people to contribute & engage than ever before. Each of our events have now been viewed over a thousand times and some as much as almost 3 thousand times. This widened the conversation & allowed us to communicate what we were trying to do in a much more effective way. A year after the first gathering Natalie & I were able to have an online event where we reflected on the campaign up until that point, what drove us & how we were feeling. This event also showed us from the people who got in touch, that we had actually came a long way, made real progress & more importantly that we must carry on & not give up. As we continued into the pandemic we started to realise how Covid19 was not only impacting current services but coming into view was a tsunami of addiction & mental health problems & we continue to be mindful of this now. Relentlessly & stubbornly, we continued to hold monthly events, engaged with the politicians & fed the press our stories and information. It felt like there was no end in sight and then finally the breakthrough we had all been praying & working for.
In April we saw the biggest injection of funding ever in the history of the addiction field, worth50million a year, It includes an annual20million to offer residential rehab to every person who asks for it.
This money not only will help save life's it is also an acknowledgement from Scot gov that they hadn't done enough & an apology also came from the first minister.
It was shortly followed but a 148 million announcement in funding from the UK government 80 million of which is for Tier 4 (rehab services) in England. Again, we are in no doubt this money would not have come forward had it not been for our relentless campaigning.
Our job now is to remain vigilant to the gatekeeping, bed blocking & other barriers that prevent us from getting access & choice of treatment. That work recently has included working alongside & in partnership with Shelter Scotland to make sure that no one has to choose between their health & their home. And to make sure that the complacency & 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, we have certainly never been and organisation who promotes our achievements, primarily because there is still do much to do before people with addiction disorders are treated fairly & 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 their right to access or choice of treatment & the inhumane barbarism & insanity of our current system will soon become a distant but bad memory that we look back on with horror.
One of most important things that this campaign has show us is our value as recovering people. None of this would have happened without the support, persistence & tenacity of the recovery community. Over the last 12 years we have led the recovery community into becoming more visible & more vocal across the UK, that is undeniable but we hope that though this campaign we can help the recovery community & the treatment community see how valuable & vital our contribution is. This was illustrated starkly on the day when Nicola Sturgeon announced the new funding in Scotland. We received over 70 messages of congratulations on recognition of our campaign from leaders & organisations bizarrely from England Wales & Ireland. The lack of support from the majority of Scotland's leadership in the addiction field during the campaign & in light of our success speaks for itself. The time for change is well overdue. This is also the time to talk about investing in us, for 12 years we have walked & lead the recovery community voice across the UK with autonomy authenticity & integrity. We have made sure our visibility has been consistent, our voice progressive & collaborative even when we have had difficult truths to tell to those who hold power. For the last 10 years we have operated on a shoestring, budget never knowing from one month to the next whether we will be able to carry on. It's now time to reflect back to us that value by proper investment. We are the addiction fields greatest assets, to continue to not see, value & support us would be a tragedy.
We have been asked by too many people to write this period of our work up to ignore doing it. When we view anytime in history that speak to us since as far back as antiquity those voices that relay back what happened are overwhelmingly those of the cultured few. The elites. The modern voices that carry on their tale are overwhelmingly those of white middle class European & north American males. Most of the history we have is from less that 2% of the human population since the beginning of time. 98% of the people who have lived on this planet have been poor & uneducated who didn't have the luxury to write their history, to tell us what it was like to be persecuted, oppressed, or simply used to build the pyramids. We hear about what it took to build the pyramids from the side of the Pharos who planned them not the hundreds of thousands of people who had to give their lives to build them. What we call history is therefore a very very limited history. In a our very small way this is a snap shop of a significant piece of history in the addiction field. Written by those who gave their life's to laying the foundations to the building & planning of something different to help those whose suffering from addictive disorders demanded not only that their voice be heard, but that their hearts & minds have access to the same resources the wealthy do to, to help us get well.
Here Is the report with the 23 recommendations we gave to the politicians, some of which we are delighted to say have been implemented since we first published but not nearly enough of them.