The Wrong Kind of Mad? The Lived Experiences of Women with Co-occurring Mental Health, Drug or Alcohol Conditions

Please be aware that the following blog contains themes of mental health, drug and alcohol addiction. If you would like further support about any of the themes raised in this blog, you can access resources at the end of this blog.

To mark International Women’s Day on Friday 8 March, Liz McCoy shares her professional experience of working with women with complex needs, and her research aimed at improving their access to treatment and outcomes. 

Introductions... who am I?  

Hello, 

First to introduce myself. My name is Liz McCoy, and I am a doctoral student studying a Professional Doctorate just entering my final year. I am also in full-time employment with one of the two NHS Mental Health Trusts in Greater Manchester (Pennine Care NHSFT) and am the Trust’s Lead for Addictions. 

I am a Psychiatric Social Worker with 30 years+ post-qualifying experience in a number of areas, with most of my work having been focused on drugs, alcohol and mental health, with a special interest in services for women in these fields… which brings me to my doctoral project. 

The research project

                                                 “Excluded from Diagnosis” 

A study looking at the lived experience of women with co-occurring mental health and drug or alcohol conditions when seeking specialist help for these conditions.  

The reasons behind this project

My interest in researching this particular subject grew from my involvement in front line practice, having been a specialist Social Worker, a Care-Coordinator and a Service Manager in the field. 

My practice observations led me to consider the experiences women have with services when seeking help. This then led me to consider if the help-seeking experiences of these women were helpful or useful to them and if they had a positive impact or got the outcome they had hoped for. Or if indeed they had made the situation worse. 

As a result of these observations and subsequent deliberations, I approached my Trust to see if they would support me to look at this, to research this area and if it was the case that these women were not getting the services they needed, to see what we might do differently, or better if at all possible.  

Pennine Care NHS Trust (my employer and a provider of specialist mental health and addictions services) generously agreed to support me in trying to look at this area and have supported me with a scholarship with Manchester Metropolitan University to undertake this project. 

Aims of the research

This research aims to gather the first-person experiences of women who self-identify as having (or previously having had, as an adult) mental health and drug or alcohol problems, and to explore with them their experiences when they have approached specialist services (statutory or 3^rd sector) for help with those conditions.  

Literature searches and reviews

During this project I have completed two scoping reviews and have commenced an Integrative Review of the literature. I have found in each of these a dearth of studies and information concerned with this area, with only one recent study sharing the space (Fox 2022) which looked at the lived experience of women with substance use who also experienced intimate partner violence. There was little else that looked at this subject area through this particular lens.  

There is however a huge body of literature looking at ‘Dual Diagnosis’ including prevalence, symptoms, aetiology, treatment and outcomes. This almost exclusively deals with people who have received a very specific (and sometimes limited) diagnosis such as bi-polar or a voice-hearing illness. The literature talks a lot about who people might be and what services need to do ‘to’ them but there is nowhere (that I could find) that actually asked women their opinion on their experience and what might have been helpful. The purpose of this research is to do that, albeit in a modest way. (See Sarah Fox’s (2022) work on cooccurring Substance Use and Domestic Abuse for an examination of that area through a comparable lens).   

Many women carry trauma-seeded mental health burdens that do not easily fall into a formal SMI (serious mental illness) psychiatric diagnosis, or even a CMHP (common mental health problem) diagnosis, and they can have lifestyles and personal circumstances which make attending the necessary assessments to get a diagnosis beyond their reach.  They are effectively excluded from diagnosis, with this also potentially being an exclusion from the gateway to support and treatment. 

Campbell and Ettore (2011) discuss the additional issues of both psychiatry and the field of addictions having a very medical-model and male-centric lens, so adding to the barriers for woman. 

Many women present to services with mental distress and mental health burdens which may not easily fit into a traditional Serious Mental Illness (SMI) framework. Whilst many do present with more easily diagnosable ‘traditional illnesses’ such as schizophrenia, bi-polar and depression, presentations seen in practice can fall outside of this very ‘illness/diagnosis’ framework and may be labelled as behavioural problems, personality disorders, social circumstances, anti-social behaviour, emotional deregulation and drug seeking behaviour and simply intoxication (‘they’re just pissed’).  

While these descriptors may well be true, the underlying emotional and mental distress for these women is also true. The use of these descriptors could serve to invalidate these women’s experience and to effectively exclude them from services due to the lack of an ‘illness’ as defined by the medical model.  As most secondary care mental health services are commissioned on an ‘illness’ (SMI) basis, and primary care does not usually have a comprehensive mental health support model, this could effectively leave a significant number of women carrying a trauma-seeded emotional burden (with other attendant problems) with limited places to obtain effective help.  

I would argue that perhaps these women are just the wrong kind of mad to obtain the support they need for their mental distress within current service parameters. 

My study seeks to explore women’s experience via the lens of their own lives and worlds, to look at what impact, if any, these experiences have had on their lives, to give voice to these very marginalised and excluded women, and use their voices to seek to positively influence services to address the presenting issues more appropriately, with or without a formal diagnosis, to look at what needs to happen for mental health support to be more inclusive for women. 

I am hoping that this project will throw some first-person light on this to guide the way for what can be done differently. 

Current position

I have recently (finally!) been granted ethical approval to proceed and begin my data collection. I am in the process of setting that up now and hope to start towards the end of March. 

I’ll be following an Interpretative Phenomenological Analysis (IPA) framework in my data collection and analysis as I am seeking to understand participants’ life-experiences from their personal perspective, and to represent their voices and experiences out in the world where, hopefully, they can contribute to service developments and delivery, and to improve the experiences and outcomes for the next women who come seeking help. 

Wish me luck! 

Please see below support resources