12th November 2018
Navigating the language - listening to the words women use to describe their mental health and hearing what they need
Medina Johnson is Chief Executive of IRISi, a social enterprise established to promote and improve the health care response to gender based violence. IRISi’s flagship programme is IRIS (Identification & Referral to Improve Safety), a general practice based domestic violence and abuse training, support and referral programme. Medina was one of the two original advocates working on the IRIS research trial from 2007-2009 and has been involved in the development of the project ever since. In this blog she discusses the experience of women referred into the IRIS programme over the last decade, the language they use to describe their feelings and how referral from their IRIS-trained primary care clinicians into specialist support has meant better outcomes for them around their mental and emotional health.
It was like screaming under water and no-one could hear me.
Domestic Violence and Abuse (DVA) can have a wide range of psychological and emotional consequences. As a result of their experiences, survivors can develop a number of serious mental health illnesses such as depression, anxiety, PTSD and panic disorders. Developing resilience, protective coping strategies and having support are all central to recovery from trauma which can be a long and arduous process, one that abusers actively seek to disrupt. The role of primary health care professionals in this recovery, coupled with specialist advocacy, is essential.
The IRIS programme trains and supports primary care teams to recognise when patients are affected by DVA, know how to ask about this, provide a supportive and validating response, carry out a simple risk assessment and safety check, offer a referral and make a clear record in the patient notes. The training around recognition includes understanding the mental health impacts that living with DVA can have on the survivor.
I worked directly with women affected by DVA for three years as part of the IRIS research trial and for the last seven years have trained and worked with dozens of IRIS Advocate Educators and Clinical Leads across over thirty sites in England and Wales who have supported over 10,000 women.
The data we gather annually from our sites and from the women referred in for support tell us that an average of 66% of women self-report having mental ill health, most commonly anxiety and depression. In addition, many women report self-harm and suicidal ideation. I suggest that any figure will be a vast under-representation of what the true picture is. I suggest this not least because the language women use to describe how they feel emotionally, how they feel they will be viewed and how they feel they will be supported is a sad reflection of bad past experiences.
Whether the words that women use are their own, what their perpetrators have told them or what those they have trusted have told them, they reflect a response that does not encourage further disclosure, help-seeking or a belief that there is anyone who can help them. They describe feeling “like a stupid woman”, being “mad” and “in a bad mental state”. Women report being told to “pull your socks up”, “get over it” and “get yourself together”. One woman says she was embarrassed to be asked about DVA but relieved at the same time:
‘I was embarrassed that my doctor asked me, and so pleased at the same time, he knew there was another reason for my depression and anxiety.’
A recurring theme is that that prior to being offered support via IRIS, women were offered medication while wanting instead to be asked about why they are feeling unwell, why their mood is low, why they feel they are struggling to cope.
‘And you go to the doctors because you’re feeling very unwell and they take your blood pressure and give you some blood pressure tablets and I thought, I’ve got to talk to somebody. And I said, I don’t sleep at all. Oh well we’ll give you some tablets for that and some tablets for this.’
Being asked about DVA and having GPs make the link between low mood, depression and anxiety is a relief for women:
‘Hugely grateful that the doctor referred me. I wouldn't have done myself. I was in a very bad place. I was really lonely and she listened, heard me and just pick[ed] up where I was making excuses for my partner's behaviour. She didn't push anything at me, but made it clear there were options.’
GPs are pleased to have access to training and a referral route:
‘This is helpful, makes me think more holistically when assessing my patients. DV is something that can affect patients emotionally as well as physically’ (GP comment after IRIS training)
The language women use to highlight their feelings and experiences around their mental health at the point of disclosure and referral is both striking and poignant. Women describe themselves as feeling overwhelmed, anxious, in torment, lonely, sad, isolated and in a bad place. The support via specialist advocacy to navigate some of their feelings and find their voice again is priceless.
‘This support is the best thing that ever happened to me. You guys (advocates) are the only ones who believed me. Although they didn't say so I felt everyone else looked at me as if I make things up and have mental health problems. You listened to me.’
‘Through some of the lowest and loneliest points in my life, IRIS was there, even if it was to help me remember to laugh, which sounds so simple, but it meant everything.’
Given the high rates of depression and anxiety reported by IRIS clients, IRIS pathways can provide a vital source of support to address these mental health needs.
‘When I felt I was falling about you were the one who held me together.’
The feedback questionnaires from survivors demonstrate that IRIS advocates are helping women improve their mental health. As a result of engaging with IRIS support, 99% of survivors felt they were listened to, 83% felt better able to cope, 85% felt more confident.
‘Before I was very sad and I was always thinking what will I do, now I am a confident person and a confident mum.’
81% of survivors reported feeling optimistic about their future and 70% said they visited their GP or nurse less.
We recognise that support via primary care and specialist advocacy are just two pieces in the recovery puzzle for women affected by DVA and whose mental health is affected. They are nevertheless significant pieces and part of the response we must all play in working to end DVA.
‘After our meeting, for a little while I felt I had come out of a tunnel. I could see the sun and the flowers and the trees and I felt OK, and I thought, this is how I should feel all the time.’
All data and quotes are from IRIS programmes running in England and Wales that are collated annually by IRISi and presented in a national data report.
Follow our Spotlight on domestic abuse and mental health for more blogs, podcasts, guidance and more over the coming weeks.