‘A terrible beauty is born’: Football, dagga and the informal settlements of Cape Town, South Africa.

I want to paint a picture for you I recently had the pleasure and pain of witnessing from the back seat of a car heading to the airport from Stellenbosch to Cape Town to return home to Dublin. I had spent the week facilitating an experimental design and analysis class at the wonderful African Doctoral Academy (ADA), Stellenbosch University.  When I am not working on my addiction research I am working on my other passion of teaching.  It was a Friday afternoon in July, mid-winter in Cape Town and the sun was struggling to break through the grey cloud. We drove along the highway past miles and miles of informal settlements with their rows upon rows of porta loos. Each one after the other lined up against the grey corrugated iron fences which held back the settlements from the green roadside verge.  As we drove I witnessed group after group of happy children, escaped for the afternoon, sheer joy on their faces as they played football, free in that moment from the shackles of school, the confines of the fences, the dark winter and  uncertain futures. There were boys of all ages, grouped and running. There were those aged maybe from 13 to 16 years old with assured confident football skills, those aged perhaps 8 to 12 some looking less able than others and finally there were the very young, maybe 4 or 5 or a little older.  Boy that were too young to be playing by a road side but equally as joyful. Perhaps even more so as their innocence protected them. What struck me most was the beauty of the sheer joy expressed upon their faces contrasted with the terrible sadness of their surroundings, the known deprivation, substance use, violence and murders.

As we drove closer to the airport I realised I had not seen any little girls. Where were they playing? Did they not get to run and play and be free? Were their mothers keeping them close for fear of their safety?  I had seen one little girl previously walking towards the rows of stinking porta loos while men, most likely other children’s fathers, husbands, brothers huddled in conversation groups outside. Who wants their child to have to negotiate these journeys simply to use the toilet?    In the week I had been in Stellenbosch there had been three women brutally murdered. There had been arrests of older women for selling ‘dagga’ an old South African name for cannabis. I had seen a reality television programme that interviewed a mother who had been raped three times and had one of her children taken away from her by its father afterwards.  South Africa is one of the most beautiful countries I have ever visited, but the word terrible came to mind yet again.

W.B. Yeats line ‘A terrible beauty’ from the poem Easter 1916 was evoked as we drove past.  I had not read the poem since school. Rereading it for this blog (see https://www.poetryfoundation.org/poems/43289/easter-1916)  I am struck by some of the similarities and struggles of a new Ireland after 1916 and a new South Africa after apartheid.  The challenges are being addressed in health and in education but change is slow and painful as we in Ireland know. We also know that investment in education and in health work.  We have seen this in our economy, in our educated workforce and in our drug strategies.  We and the north of Ireland are facing these challenges again with the threat of Brexit. The African Doctoral Academy is doing its part for education in South Africa and I will continue to do my small part when invited.  I may not make a difference to the boys playing football or to the girls tied closely to their mother’s apron strings but perhaps someday their lives may be changed, inspired or helped by the education of my former ADA students.

‘All changed, changed utterly: A terrible beauty is born. ’ (Easter 1916, W.B. Yeats).

Informal Settlements

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“The Van!” Not so much Roddy Doyle, but Yale Universities ‘Recreational Vehicle’ bringing harm reduction and community healthcare to where it is most needed

Last week I had the wonderful opportunity to visit the Yale University School of Nursing, the Yale School of Medicine and their Department of Internal Medicine. I had been invited to share my knowledge and experience and give a grand rounds guest lecture on European addiction research and treatment, given my role as the Vice Chair of the Scientific Committee of the EMCDDA. The EMCDDA (see www.EMCDDA.euopa.eu ) provides outstanding, up to date evidence on best practice and the current drug situation across the EU 28 plus Norway and Turkey.

However while I was there I was the one that learned so much from their experiences and thought it would be of interest to share it.

In spite of raging snow storms on my arrival, my hosts Dr Jeanette Tetrault from the School of Medicine and Dr Lindsay Powell from the School of Nursing were exceptional and arranged for me to visit their places of  practice.

First stop was the APT Foundation (see https://aptfoundation.org/ ) and a meeting with dynamic and inspiring CEO, Dr Lynn Madden, who was passionate about up-scaling, to ensure barrier free treatment reached all those who needed it. APT works with an open access, integrated care model with over 2600 clients and is housed in a state of the art building reflecting their belief that people who use drugs are entitled to state of the art services and no less. In addition to drop in treatment, clients attending APT can choose to attend up to 13 different group or individual activities each day, 5 days a week. These run form 6 am in the morning to allow people to get to work after their session.  An example from Mondays schedule included topics from how was your weekend, to mens trauma and recovery, womens recovery group, to life skills and more (see photo attached).  APT has also extended their model internationally to work with harm reduction services within the Ukraine and beyond.

Next stop was a visit to Dr Ruthanne Marcus, Associate Director of Clinical and Community Research and works with Prof Rick Altice, who coincidentally I had met previously in my role as judge and presenter of the EMCDDA of scientific award in 2017.  Ruthanne, while a member of the Department of Internal Medicine is, given her role in community research, based in the building that is home to the Community Healthcare Van (The Van/The Bus/ The RV ) and Syringe Services Program (The ‘little’ Van). Ruthanne is involved in a range of trials one of which is on adherence and aims to assist people who are homeless, who use drugs and have co-morbidities to remember to take the medications. Each person is provided with a special prepaid smartphone for their use and smart medication pack to store their tablets (see photo of pack attached).

Ruthanne introduced me to Dr Sharon Joslin, an advanced nurse practitioner and Director of the Community Health Care Van and a living advocate for harm reduction and accessible healthcare for all.  Sharon and the team of Angel P. Ojeda, research assistant and HIV counselor,  phlebotomist and certified nutritionist, and research assistant Rodolfo (Rollo) Lopez Jr of the Syringes Services Program (the small van) were truly inspirational. Their commitment to their model of working and the accessibility of their healthcare, harm reduction and needle syringe services for grandparents in urban disadvantaged communities to inner city homeless people using substances and selling sex to mothers and fathers needing healthcare was a model we in Ireland and elsewhere could emulate. Their role was not by any means to replace a persons primary care provider or general practitioner but rather to supplement this care or encourage people outside of the main stream care systems to engage with a regular service. The ‘van’ was much more than its name! Think high spec recreational vehicle stocked with every possible information, service and integrated computer system a community healthcare team might need. Clients could attend anonymously or establish a health record which became part of the wider single record system shared by hospitals and other healthcare service providers from the persons personal general practitioner to their medical consultant or emergency department team. I tried to capture some photos of ‘The Van’ and they are attached here.

Throughout each of my visits I was accompanied by the exceptional Dr Lindsay Powell a Doctor of Nursing Practice with joint appointments within Internal Medicine (alongside Ruthanne) and the School of Nursing.  Lindsay brought me through the snow and out to West Haven to visit the Yale West Campus where the School of Nursing is located. Lindsay arrange for me to have a tour of their new high spec clinical simulation suites and explained how nursing was a graduate entry profession which recruited top graduates from other disciplines after which their nursing education, training and advanced practice begins. Following our two days of tours Lindsay invited myself and some advanced nurse practice students to her beautiful New England style Connecticut home where we shared learning, good food, good wine and great company.

Thank you Lindsay, thank you Jeanette and thank you Yale for showing us how it can be done!

Today Yale University was named number 9 in the world for nursing and number 8 in medicine in the world by the QS World University Ranking by subject. The School of Nursing and Midwifery I am happy to report was named number 41 and the top School in Ireland.

Disruptive Innovation, Drug Use and the Futures Meeting at the EMCDDA

I returned last night from two events at the European Monitoring Centre for Drugs and Drug Addiction (www.emcdda.europa.eu )   One was my six monthly Scientific Committee meeting (http://www.emcdda.europa.eu/about/sc)  and the other was a most interesting, if somewhat overwhelming Futures meeting.

Why do I say overwhelming? I suppose because of the amount of new ideas we were presented with at both meetings, and how the illegal drugs field is in my opinion undergoing a transformative phase. The term ‘disruptive innovation’ came to my mind when I reflected on the content of the meetings and the informal conversations we had over coffees.  I decided to check this phenomena out and where better than in the Harvard Business Review (HBR).

This is what the HBR say:

Disruptive innovations originate in low-end or new-market footholds.

This is what I heard at the meeting:

Cannabis regulation in the United States has become big business. What started out as local growers (the low end of the market perhaps?) advocating for legalisation has turned into a multi-billion industry with state of the art factories providing large scale employment in cities, paying taxes and contributing to the economy.

This is what the HBR say:

Disruptive innovations don’t catch on with mainstream customers until quality catches up to their standards.

This is what I heard at the meeting:

International soft drinks companies are exploring new cannabis products from the traditional cookies, to hand creams and beyond. Would these be the new market footholds, for higher quality products for mainstream customers that existing big business wishes to capitalise on?

What about Big Data and Disruptive Innovation?

Disruption Change and Innovation is not only happening across the globe in drug regulation and drug products but it is also happening in the data we have at our disposal.

We have heard about ‘Big Data’, but how we harness this and the positives of disruptive innovation, to help us provide better services for people who use drugs. Never was this more pressing than now on the North American continent, where thousands of people are dying from fentanyl overdoses.

At our meeting in the EMCDDA we  had two fabulous presentation from the i-trend project (http://www.i-trend.eu/). One group was harnessing the data from international online drug forums, these are informal chat rooms where people who use drugs can ask one another about certain drugs, their effects, safety concerns, highs, lows etc.  The other group was harnessing the data from online drug stores and mapping drug products available. Both groups were using the data to inform early trends in markets and NPS use and in my view rightly challenging or disrupting the way we think about our drug demand indicators and their timeliness.

Harm Reduction and Disruptive Innovation

Other talks were exploiting, for the benefit of people who use drugs, the opportunities of novel approaches within harm reduction. One group was analysing syringe residues at a newly opened drug consumption room and one was pill testing across Europe at music festival sites.

According to the Harvard Business Review getting disruptive innovation right matters.

  1. Disruption is a process.
  2. Disrupters often build business models that are very different from those of incumbents.
  3. Some disruptive innovations succeed; some don’t.
  4. The mantra “Disrupt or be disrupted” can misguide us

Finally, what does a disruptive innovation lens reveal?

From my point and view and given what I have learned over the past two days, Disruptive Innovation is happening in drug regulation and big business. It is happening underground with new and more potent drug products, it’s happening in research and big data. Is it good or bad? Perhaps it is both. It is challenging our ways of thinking, our policies, our business, our services and our data.  We need to stay current so that we can harness it for the benefit of people who use drugs, people who make policy, do research and provide services.

Thank you EMCDDA, we need more!

Reference

The Harvard Business Review see:

https://hbr.org/2015/12/what-is-disruptive-innovation

Spirituality, the Irish papal visit and people who use drugs

In the week that we are expecting a controversial papal visit, it has prompted me to question if we are missing the possible role of spirituality in the lives and  journey  of people who use drugs.

Having attended, as a young teenager, the previous visit in 1979 I am struck by how different this visit 29 years later is.  It has prompted me to revisit the data on spirituality that I captured in my teams 2008 treatment outcome study, the ROSIE study (see https://www.nacda.ie/index.php/publications.html ).

From 2003/4  to 2007/8  the then National Advisory Committee on Drugs (NACD) (see https://www.nacda.ie/)  supported the first and only national drug treatment outcome study for people who used drugs and used heroin in particular.  Four hundred and four people entering a new treatment episode consented to be recruited and followed up at 1 and 3 years post treatment entry.  People were asked about every aspect of their daily lives and many reports and academic papers were produced on the findings and these are available at http://www.nursing-midwifery.tcd.ie/staff/ccomiske . These findings were overwhelming in their message that drug treatment works, not only for individuals but for families, communities and our society.  The results on religion, spirituality and church aid were never presented, until now.

Professor Joanne Neale and colleagues in their 2014 paper exploring how we should measure addiction recovery, questioned various professions which included addiction psychiatrists, senior residential rehabilitation staff and senior inpatient detoxification unit staff.  Unfortunately they did not involve people who used drugs in their research but they did recognise this as a considerable limitation in their findings.  Neale and colleagues identified 15 measures of addiction recovery, these were, substance use, treatment/support, psychological health, physical health, use of time, education/training/employment, income, housing, relationships, social functioning, offending/antisocial behaviour, well-being, identity/self-awareness, goals/aspirations, and spirituality! Isn’t it interesting that so few papers address this aspect of the lives of people who use drugs?

One might wonder why there is such a reluctance to address this topic.  What we have seen and heard this week in our media about how difficult this papal visit is  for us and how much we have developed and matured as a people since 1979, perhaps this explains our previous reluctance to address this topic.  However, we have matured as a people, we have an evolving drug treatment system and a comprehensive national drug and alcohol use policy, so perhaps it is time to look at the role spirituality.

Given we are now ready, what were the unpublished findings on spirituality from our national ROSIE study on outcomes for people who use drugs?

At recruitment in 2003/4 the ROSIE study found that of the 404 people recruited as new treatment entrants for opiate use across the country almost 4 in 10 (38.3% or 141 of 368 who replied) willingly identified with a particular religion. Furthermore when asked what religion individuals identified with over one third (36% or 145 of 404 responses) stated the religion they identified with and this ranged from Christian to catholic to spiritualist to Buddhist.

Clearly the ROSIE study participants had no trouble expressing their spirituality, be they spiritual or not. Perhaps then it is time that we had no trouble recognising that it may, or indeed may not, have a role to play in a person’s own chosen recovery journey….

 

Reference

Joanne Neale, Emily Finch, John Marsden, Luke Mitcheson, Diana Rose, John Strang, Charlotte Tompkins, Carly Wheeler, & Til Wykes

How should we measure addiction recovery? Analysis of service provider perspectives using online Delphi groups. Drugs: education, prevention and policy, August 2014; 21(4): 310–323

 

Trauma informed addiction services and nine lives

I have written before in this blog about the lives of nine people who used drugs whose paths crossed mine in the course of my various research projects. This has ranged from my own PhD work on injecting drug use and HIV in the early 1990’s to the ROSIE project on opiate treatment outcomes  from 2003 to 2008 to  work on urinalysis and  the DAIS (Drugs and AIDS Information System) database from 2006 to 2010.  Recently my work has taken me in the direction of mental health and trauma.

The experience of trauma in the lives of people who use drugs is being recognised as a significant factor that needs to be addressed in how organisations provide their services, from when a person first knocks on the door to when that person decides they are ready to move to the next stage of their journey.

To be honest I don’t know why services didn’t recognise this before, and I include myself in this remonstration, particularly when I read the story of Patricia whom I first encountered in my research in 1990.  The outline of her story and the ongoing trauma she has endured and survived as captured through her appearances across my work is described below. I am sorry to say it is a sad read but is also a story of a woman’s endurance, strength and survival.

Patricia was born in 1965.

At the age of seven when most little girls in the Ireland of 1965 were preparing for their first holy communion and were excited about their new dress and the big day out, Patricia was sexually abused.

At the age of 15 in 1980, when most young girls were thinking about school, school friends  and the pending ‘inter cert’,  Patricia first injected drugs.

At the age of 20 in 1985, when same sex partnership in Ireland was a criminal offence and would remain so until 1993, Patricia had her first relationship with another woman.

At the age of 24 in 1989, when homosexuality was still illegal, when AIDS raged across the globe and after many relationships with men and injecting drug use, Patricia was diagnosed as HIV positive.

At the age of 45 in 2010, when harm reduction was the prevailing treatment philosophy, Patricia was required to undergo regular urine screening while in treatment.

That was the last time I encountered Patricia. She had survived, drugs were in her life and had continued to be so. She was in treatment for opiate use, cocaine, cannabis and benzodiazepines. She had been abused as a child, criminalised for her sexual orientation as an adolescent, been handed down a HIV life sentence as a young woman in her 20’s and as a woman in her 40’s she was peeing into a cup on a weekly basis so that she could receive her methadone.

Across the decades from 1980 to 2018 how did we not see and appreciate the trauma that Patricia and thousands of other Patricias and Patricks suffered?

Our services and treatment helped keep Patricia alive, now we have to give people back their lives and their dignity, and recognise the need for trauma informed services. I am only sorry we, and I, did not recognise this before.

(Please note names and minor details in this blog have been changed to protect the privacy of individuals)

For further information see sources below:

http://www.thejournal.ie/history-lgbt-rights-ireland-4078424-Jun2018/

http://www.saolproject.ie/TraumaInformedCareConference.php

https://www.drugsandalcohol.ie/view/people/Comiskey=3ACatherine=3A=3A.html

 

Reflections on ‘Course 11’ by Agnes Lutomiah (African Doctoral Academy student)

Reflections on “course 11”: Introduction to the design and execution of real-world experimental and intervention studies.

During this 2018 winter school that was offered by the African Doctoral Academy (ADA) at Stellenbosch University, I got an opportunity to attend a one week short course in “Introduction to the design of real-world experimental and intervention studies” later often referred to as   ‘course 11’ during that week. Initially, when I learned of this new course that was to be offered, I had no much idea of what it will entail. Though, these concepts: “design”, “real world”, “experimental” and “intervention” caught my interest. This is more so ignited by my interest in evaluation research.  Particularly, the whole aspects of baselines that precede interventions. As I would learn later learn the course was mainly on the research designs used in research in the ‘real world’

This was the first time I attended a research methodology training course with a very diverse group of PhD students drawn from the fields of Engineering, Agricultural Economics, Biochemistry, Food Science, Psychology, theology and Science and Technology Studies, among others. Not to mention the diversity of our two facilitators (with a background in mathematics, health sciences, and psychology). This was exciting and a great opportunity to gain knowledge from this diverse group of facilitators and research students on their own research. Specifically, reflect on the different topics they were looking at, the different data collection methods and data analysis used for their studies in the different fields. However, admittedly, it was not easy to get to understand their different topics and points of view as the course commenced, given the specificities in the language and concepts used in the different scientific fields. More importantly, as a student focusing on evaluative bibliometric analysis, this was then an opportunity to observe and recognize the field differences that exist in the communication and dissemination of science or knowledge, as seen a whole week long.

The course started off with an ‘assignment’. Unexpectedly. Our facilitator asked us to write four sentences of our title, rationale, research design, and methods. Admittedly, it was a difficult task but worthwhile.  At no point in my PhD writing have I ever deeply thought of my rationale in one sentence. Apart from this process allowing us to constantly reflect on our studies, it was very significant, given that, for the different research designs that we were introduced to, the choice of using the designs were largely informed by the aims, objectives, rationale, the expected data and the methods of any given study. Never before have I had a chance to reflect on my title, was aims & objectives on a daily basis as during this week of “course 11” training. This assignment would end up being one of the most important activities of the week. At the end of the week, it culminated to what one of my colleague called “our five minutes of fame” as we presented our four sentences of the research title, rationale, research design and methods and later responded to the arising questions in five minutes. This also offered me an opportunity to share my research in Bibliometric studies with a group of researchers in other fields who are not necessarily familiar with the language, concepts, and terminologies in the field. Hence, this improved and challenged my communication skills. We received constructive feedback from colleagues and facilitators which I attest has come in handy.

Back to the main objective of the module – understanding the different research designs. This module enabled us to garner information on the different research/study designs: cross-sectional studies, longitudinal studies or cohort studies, case-controls, Randomized Control Trials (RCTs), modelling and mixed methods design. For the students commencing their PhD programmes, it was easier for them to identify the designs applicable to their studies, whereas, for those in their second or third years of their research, clarity on the designs used was useful. The assumptions and considerations in choosing these designs were discussed in detail. Alongside, this module also deliberated on the different data collection methods and data types, sampling, and different sample frames. Also, the philosophical underpinnings of designs such as mixed methods were also discussed. Not to forget the emphasis on the ethical issues pertaining to research. The mode of teaching used at this stage – use of videos and examples from previous research – enabled me to have a quicker grip of the ideas to be later discussed. This is an idea I will definitely take up for self-learning and maybe when teaching others in future.

Individually, I don’t use all the above-mentioned designs in my PhD research except for the cross-sectional studies and mixed method design. However, I found this information pertinent in two main scenarios, I presume it will apply to my colleagues. Firstly, in my literature review – on the studies on collaboration networks, scientific production and funding and its relationships – I found studies that used designs such as Geospatial analysis, (economic) modelling, and Longitudinal or cohort studies, mixed method designs, cross-sectional studies. This information allowed me to retrospectively reflect on the assumptions of the designs chosen for the reviewed studies, the sampling used, the data collection methods used and types of data used – since all these influences the evidence and conclusions made in the different studies reviewed.

Secondly, research is often conducted in the “real world” involving researchers from different scientific fields, in different contexts who collaborate to solve “real world” problems. Thus, as an individual who is keen on a research career especially in evaluation (in the health and education contexts) or research, in general, these knowledge is useful.

Apart from knowledge on research designs, data collection among others, I cannot forget to mention the ‘real life’ pieces of advice we received in relation to our PhD studies from our main facilitator (Prof. Comiskey). Firstly, her emphasis that “during your PhD studies, life happens, and when it happens, you have to keep going. Never stop!” Life does happen. She added that “the happenings might be good or bad, but you have to keep going”. Given her experience as a professor who had produced several PhD graduates, she did have a myriad of examples to draw from. Lastly, the emphasis that we have to limit the scope of our PhD studies and ensure that we do very good research. Which in her view, a well-done PhD research will end up being the “selling point” for our research in the future.

In closing, I will like to say a week worth the investment given the intellectual knowledge and ‘real life’ lessons. I cannot forget the dedication and patience our facilitators had in terms of responding to our questions. Not forgetting the ‘one-on-one’ sessions they had with each one of us, discussing our research and giving us valuable feedback. I am glad for the great experience you gave us during the ‘course 11’ training.

Author: Agnes Lutomiah