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  • Writer's pictureMaggie Cee

A work in progress

It's been a while since my last post but I thought it was worth a general update on my goings on for anyone interested!

I have a 35-year employment history spanning 30 (that I can remember) paid jobs. I’ve pretty much had a go at most things, starting out in sales and marketing and found I was good at using a computer (despite flunking my computer studies CSE in school). That led me to become an intuitive desk top publishing operator and despite not being able to draw, was accepted at Uni of SW on the Master’s Graphic Communication course. I never finished it of course (typical ADHD) because I wasn’t eligible for finance in the end, but the modules I did do, I gained really excellent marks, but also gained something more valuable - the confidence to call myself a graphic designer.

In regards to my mental health, I can’t ever remember not having issues right from being a young girl, and this was back in the day when it was highly stigmatising and mostly hidden. Although my first notable GP intervention was when I was 16 and noted for ‘nervous debility’ and offered anti-depressants. Since then I have had various diagnoses including Bipolar (Cyclothymia), Borderline Personality Disorder (EUPD), and more recently ADHD. The ADHD diagnosis was in November 2021 so I’m still exploring what it means and how it’s affected my journey so far.

There’s also a psychological aspect of ‘what happened to me?’ as opposed to psychiatric disorders. My father died when I was 12 and my mum and I moved from the Isle of Man to England, unaware of the huge impact this would have on both of our emotional health going forwards. Without going through probably a book’s worth of details, the following years were very difficult where I encountered my mum being sectioned with hypomanic episodes, being bereaved by suicide, various troubled relationships, eating disorders and body dysmorphia. So, it’s been a hell of a ride so far but I’m still here and still a work in progress, but after an acrimonious job ending and subsequent breakdown in Autumn 2017, I’ve been unable able to work in regular employments since.

I have, however, been able to channel my crazy creative mind into voluntary and ‘permitted’ work in my local community since. Earlier in 2017 I un-shelved a long-standing idea I’d had to publish a magazine aimed at mental health wellbeing and raised the money via a crowdfunding project and started sourcing articles. Mindarium Magazine eventually went to print and launched in May 2018 and I distributed almost 1000 copies in my local area (Rhondda Cynon Taf) which was met with encouragement and praise and latterly uploaded digitally to here: I then formed a board and registered Mindarium as a C.I.C. in March 2019, with the aim of supporting lived experience publishing in the future.

During engagement for Mindarium, I began attending local mental health events and networking and in March 2018 I applied to Interlink RCT to become a Service User Representative for the Local Health Board’s Together 4 Mental Health forums. I was successful and began a complex journey of representing people with lived experience in the Cwm Taf area on various forums and sub groups. The first one I joined was the Suicide and Self Harm (S&SH) because of my personal experiences (blog here: I also wanted to join the Children and Young Person’s (C&YP) forum as I always believed that early intervention in my own journey could have held much different and positive mental health in adulthood and also I had a young boy going through school and recognising some of the same struggles I had in his experiences. I was also invited to join the Third Sector forum and asked to engage and collaborate with other stakeholders on the Welsh Ambulance Service Mental Health Support bilingual leaflet which I also designed.

Shortly after become and rep I also joined the new South Wales Valleys Branch of Samaritans as an Awareness Volunteer and opted to join the Education Team delivering their Crucial Crew, DEAL and Self Harm modules into locals. I was also a very active Outreach volunteer where I went out on community events and locations handing out leaflets and raising their profile locally and national events such as Pride and the Eisteddfod. When the Working with Compassion toolkit was launched I became involved with delivering sessions to companies and organisations mainly in the RCT area, including the RCTCBC Train the Trainer events with over 300 employees over 10 sessions and various PACT meetings. Since the Covid restrictions came into place last year I have continued delivering our workshops online notably delivering Working with Compassion to Open University Tutors, Coleg-y-Cymoedd and over 250 attendees for the DWP Job Centre staff UK wide.

My experiences from these projects, coupled with the high statistics of suicide by predominantly young men gave me an idea for an unbranded leaflet that I wanted to design and deliver into lifestyle led environments such as tattooists, barbers, gyms, garages and bars where young men went and was able to secure a £1k ICF grant (via Interlink RCT) in December 2019 to produce this. I had started conducting extensive research and engagement in my local community, and employed a popular local artist to create a ‘relatable’ set of imagery and had finished the bilingual design ready to go to print just before the Covid-19 lockdown.

During engagement for this project I met Nicola Smerdon who’d lost her 22 year old son to suicide after he consumed alcohol and cocaine together just the year before. I had heard of this before and was sure this was happening in my community also from being out with the Samaritans. There was very little information in the UK online but I did find sources of research in the US where it showed alcohol and cocaine mixed together to create a toxin called cocaethylene and was linked with increased risk of suicide/sudden death. Nicola explained that she had explored why there wasn’t more awareness around this issue but due to complexities in the Coroner’s reporting and lack of toxicology parity between various areas, research and consequent awareness has been slow to evolve in UK.

So during the first lockdown in April (2020) I put together a 10 question survey aimed at finding out more about what was happening locally and was overwhelmed at the response just from sharing via my social media pages. Over 820 people completed the survey and interestingly there seemed to be an overwhelming commonality between the National Statistics and these findings, which I have since shared with many key organisations and forums in South Wales and the Welsh Assembly Cross Party Group for Suicide. I feel it’s given us proof that even though the survey is flawed academically, but that at least 820 people have been directly affected by this issue and this has motivated me to join with Nicola to understand the issues and create more awareness in order to prevent suicide from this apparent cause.

Due to the Covid restrictions the leaflet printing went on hold but in May 2020 I created an online version of the See Say Signpost leaflet along with service user led video montage found here: I also created this infographic to display the results of the survey.

After hearing about another preventable death in our community in January 2020, Nicola Smerdon (#4Tom) and I joined with Nicola Abraham (another bereaved mother) of the Jacob Abraham Foundation in Cardiff to set up an independent task group to tackle the barriers we each faced in promoting awareness of Cocaethylene. The main focus of this group will be to network with representatives from varying sectors including substance misuse, mental health, public health, police and local government and lobby for more academic research and policy changes and to promote awareness around cocaethylene (Co-alc) linked suicides. So we became the Co-alc Alliance and we predominantly cover the South East Wales region which correlates with the National Suicide Prevention strategy territories and we link in with our regional coordinator. More awareness of this issue among young men and their families and work with sector partners in mental health and substance misuse to create better pathways for people in this profile to access support services that already exist.

Our approach differs from regular suicide prevention strategies because we understand that there’s a specific demographic of predominantly young men, ages 16-35, who partake in this risky behaviour as a social indulgence and that many of these people do not see themselves has having a mental health issues until it’s too late. Therefore help-seeking campaigns such as promoting talking about it and getting help for their mental health are not as effective to people in this profile. We believe a combination of the cocaethylene toxin alongside sleep and nutrient deprivation in the hours/days following the ‘binge’ are the crucial elements of increasing suicidal behaviour and that’s what we want to promote awareness of, particularly to parents and other people living in close proximity to people doing this so that they can help them survive the ‘come down’ and understand why they feel like they do and then signpost them to actually getting help if they want it.

The neglect of this issue in services is reflected in a study (March 2021) by James Bailey et al, ‘Alcohol and cocaine use prior to suspected suicide: Insights from toxicology’ where it’s concluded that “the lack of emphasis given to substance use in many national suicide prevention strategies as well as the need for increased public education about, and public health interventions to address alcohol and cocaine use in suicidal acts.”

In September 2021 the See Say Signpost leaflet I originally created was eventually printed with an extra panel highlighting the co-alc issue. I also created a handout card and these have been distributed mostly locally but also had requests and sent packs as far as North Wales, Carmarthen, Swansea and several areas in Cardiff with really positive feedback. I have also been creating and delivering workshops on demand both in person and online and will be continuing develop this campaign with the two Nicola’s over the next year or so.

For me personally my work with this issue has become over and above my role as service user rep and is totally separate from any voluntary work associated with the Samaritans as this particular issue does not currently fit within their policies. There are also big changes in our local CVC and our local health and education boards which mean that the roles I have been doing have changed. I’m working with the current reps to set up an independent lived experience forum so that we can do more for around engagement and link with more external stakeholders and hopefully that will provide me with another outlet along with the National forum work we’re involved in on a voluntarily basis.

I am also evolving as a person and understanding more how my physical and mental abilities and disabilities affect my life ongoing and where my ‘work’ fits in with the bigger picture. Although I am currently not well enough to work consistently for an employer, I need to have a purpose and my ‘work’ provides that for me when I am well. But keeping that balance of wellness has always been a struggle between periods of mania and hyper-focus to complete overwhelm and mental debility. This also makes self employment a problem because of the fluctuating way in which finances are managed when you’re self reliant; ie what happens to paying my rent on a downward spiral? So while I hate being reliant on the welfare system, it does mean I can continue to contribute to my community on a voluntary basis when I am able and without pressure and with this in mind I have recently re-engaged with Mindarium CIC that I originally set up before I got side tracked with Reps and Sams.

I won’t be producing a printed magazine as I’d first planned as I realised that the business model was reliant on me being super human and 100% well. However, I will continue to network and collaborate on projects where I feel my creativity can be utilised to work within the core aims and passion I still have. So, I’m now looking at a few ideas I’d like to try including developing voices of living experience through an online articles format, and I am also perusing opportunities to create and deliver more workshops on various topics but mainly Mental Health Education aimed at adolescents and their parents where I feel there is a huge gap in services and support especially around issues with body image and social media, peer pressure, neurodiversity, risky behaviour and ultimately suicide prevention. From mine and my own son’s experiences, I have been able to reflect that the current systems we have in place for education and health are not fit for purpose for too many young people who are slipping through the net with some not making it at all and I can’t do nothing about that. Although I have seen that there are changes being implemented, I guess it’s not happening fast enough for me. I want to create real change in real time for people now, today. Not wait until it’s too late or for the endless strategies and plans to come into effect through paper shuffling, endless consultations and box ticking. I guess that’s why I’ve been called a maverick - in the dictionary it means I’m an ‘unorthodox or independent-minded person’. I guess, I can live with that…

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