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Challenging the stigma around mental ill-health in BME communities

Asha Iqbal is a mental health campaigner and founder of Generation Reform, an initiative that  aims to tackle head-on the stigma that Black and Ethnic minority communities face around the issue of mental health. Calling upon her own lived experience of coercive control and ‘honour’-based abuse, Asha has been featured in publications such as Women’s Health, where she’s spoken about her struggles with PTSD and anxiety. Find Asha on Twitter

Working in a mental health hospital as a call handler, I used to see patients from South Asian communities, whose families would rather pretend that their relative was abroad than in hospital, because they were so ashamed. There was a complete silence around mental health within these communities. Shame and stigma can really affect patient treatment; it can impact on their engagement and the speed of recovery. As an Asian woman, it was something that completely shocked me, and it inspired me to write a blog post regarding my mental health problems growing up.

The blog attracted 30-40,000 views within a few hours and I had hundreds of messages in response. I didn’t realise how much impact it would have. And that’s how Generation Reform started. Because of the interest that I got I thought there was a need for an open conversation. I was probably one of the first people from the South Asian community and with a Muslim background to talk openly and publicly about these issues.

I felt that different generations had different experiences of stigma, shame and barriers and that each generation needs different approaches to help them reform, that’s why I named it Generation Reform. I am not a professional in mental health, so I thought with my media and marketing background, the best way for me to tackle this issue was by creating an open conversation and using social media the way I knew how. I thought, let’s use my skills and try and tackle this issue.

There’s quite a lot of different issues associated with mental health for some communities. One would be reduced marriage prospects and the shame attached to that. Having mental health problems can reduce your chance of finding a suitor because some people believe that mental ill-health would be passed on to any children and so wouldn’t see you as marriageable. Of course in some communities, there is a danger of forced marriage and so being seen as unmarriageable is a risk factor.

Unfortunately, severe mental health problems can sometimes be associated with either black magic or the ‘Jinn’; supernatural and sometimes demonic beings. People brush severe mental health problems under the carpet so a lack of understanding and education about mental health creates further barriers.

I got told many times that the answer to my mental health issues would be through prayer and that this would cure it. Even when I was feeling suicidal that was the only response I got. As you can imagine this leaves a lot of people without the support and medical care they need.

Within South Asian communities, the older generation hold a lot of the power. The knowledge that they have on any topic will be the advice that’s given and usually what they say goes within the household. However, a lot of the older generation do not use social media so for me a way to reach younger generations and spread better knowledge and awareness of mental health was through social media.

Two years ago when I actually started campaigning I found it a struggle, because I couldn’t see mental health campaigners that I could relate to. None of them faced the same struggles with ‘honour’ abuse that I did. None of the public campaigners were from South Asian communities orfrom a Muslim background. That gap in representation is what inspired me to keep going.

That’s the feedback that I got from other young Asian people; that it was amazing for them to see someone from the community, not sensationalising anything but being quite open and honest about their own experience. 

A lot of people face mental health problems; one in four is the current figure. It needs to be normal conversation, it needs to be something that we tackle on a daily basis. It can’t be something that we’re surprised to be asked about.  My wish is for it to just be part of daily talk so that people aren’t afraid of reaching out for help. 

Even if you’re not experiencing mental ill health, you can help. It’s always great to have a discussion about mental health, to know what services are out there and to be non-judgemental. That’s one of the most important things; don’t be judgemental. Just listen but also do your own research, start your own conversations as well. That’s what helps break down the barriers and the stigmas.

 

For more information and support with forced marriage, mental ill health and ‘honour’ abuse please refer to the following organisations:

Mental health:

Mind

Young Minds

 

Forced marriage and ‘honour’ abuse

Karma Nivana

Forced marriage unit

 

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Babs' story

This story was submitted to us by Babs, a 65 year old woman and survivor of domestic abuse.

My name is Babs.

I am 65 years old; I say that because it is my age, and age has defined my life.  I am today at home reading a book.  I feel well and quite content.  I bought some autumnal plants for the garden, even though there is a storm brewing.  The cats are calmly asleep and my head feels quite peaceful.  These days are becoming more common for me now – this feeling of peacefulness.  I don't have a partner, and I still have a mortgage.  I have skills like being a swimming teacher, and an English language tutor which I took up after my divorce. I also volunteer, sing in two choirs, and write.  I have always found a space to write, however dark the day. It has been my friend, a black or blue ballpoint pen, scribbled on bits of paper; poetry, love, relationships all go down on notepads when I feel this gentle soothing space in my head. 
 
When I think back to when I was forty, I only think of the colour black, and a dirty underground train and a tunnel so dark there wasn't even a flicker of a dying light bulb to see me through.  It has taken all these years and beyond to hear my little squeak of a voice like a roaring mouse talking to me back, instead of hearing others shouting, telling me off, hitting, screaming, crying, anger, children, fighting, hurt and pain. 
 
I first met him when I was 24, studying by night for a degree.  He was nothing like the man of my book dreams.  But he was affectionate, kind and tactile.  He would wrap his arms around me with love.  He was funny, witty, and had a love for the pub.  I thought he would be my soulmate.  He wrote poems just like I did.  We could have a life together and it never occurred to me that when he drank, or when I had done something wrong or upset him, he had permission to hit me, or to shout and scream and call me names and then the next day apologise and tearfully say he had never done anything like that before, and was sorry he wouldn't do it again.  I always believed him.  When finally our relationship ended, and I had the strength to end the violence, I thought I didn't know him at all. 
 
When I was young I was told I was quite sensitive and so words that seemed trivial and meaningless stuck with me.  A negative tone, a phrase… all I remember is not feeling good about myself, it consumed what should have been a happy childhood. I often felt alone and afraid, in a family home surrounded by aunts and uncles and cousins.  We were a real family, but emotionally behind closed doors I felt as apart as the raging oceans that divide our beautiful lands.  Something was wrong with me, I didn't quite fit in.  But however I tried to push away those family ties, I always went back for love, attention and approval.  
 
I learned the word ‘can't’ very early on, I couldn't pass exams, I couldn't cook, I couldn't find a boyfriend, I couldn't make myself pretty.  My brother shut himself in his room, when he heard my tears. 
 
After I studied in my twenties at night school for a degree, I settled with my children and husband.  But the concrete cementing the bricks was cracking.  I had the same emotional distance from my marriage as I did from my childhood. I tried so hard to make it work, but he could not deal with or understand my emotional needs, and I could not understand that his way of dealing with problems was to drink or to shout at me.  He would call me mental, neurotic, or mad or all three.  When I couldn't take any more, I shouted back, got angry or hysterical, it was like a tidal wave coming at me, and I had no defences. 
 
I loved my children until my heart would break. I thought by giving him a family, and children, laughter and love he would be the nice, loving husband, I always craved and he wouldn't have to keep saying sorry for what he did to me.  I tried so hard to make it work, we had counselling, and he would just rant at the counsellor with all the things that irritated him about me, but he never talked about himself, or things that really mattered, like being in debt.  I didn't want it to end. He found a job out of London, he kept finding jobs out of London, in the hope I would move away from my friends and life.  He was never happy in one job, and so I thought if I taught, and earned good money, he could give up work and be at home with the kids.  Everything I did was for him.   
 
One night he got hold of me whilst I was studying.  Something snapped.  I didn't want this to go on any longer.  I had had enough.  I am a fighter, to give up I felt a failure. 
 
After he left, without my emotional outbursts to contend with he became the perfect father.  Suddenly I found myself in charge of a broken family, I had to reunite us all as a unit without their dad, with new boundaries and rules – I was doomed for failure.  My children were left miserable and angry without their dad to put them to bed at night. I missed the key in the door, when he came home from work, I still do.   
 
On contact times, he would stand outside the home and cuddle them until their hearts and his would break.  Then they would call me names, and he would stand there and say nothing.   
 
They went from one parent to another, for a childhood lost in a rampage.  Although I got full custody, the pull of an absent parent was too much, and my two daughters went eventually to live with him.  They estranged from me and left with me with forever love that I hold inside for them. 
 
I managed to move and start again to rebuild my shattered self-esteem. My ex-husband died and I had hope again for my family that we could rekindle something that was lost. But the baggage of abuse hangs on, as I reproach myself with guilt, sadness, and hurt. 
 
There are no winners. I have managed to find my own identity again, the person I was or wanted to be, the passionate writer, love of the sea and sunshine. I can't get it all back, because my children have dealt with their own pain by starting again, a life without me to share it with. 
 
It's too late now for bickering and arguments.  This is how it is for this moment in time.  My love for them unbended for all we went through and came out of.  I live in hope we will share it again one day. 
 
I don't need lots of money in my life now.  I just crave some peaceful solitude without childhood fears creeping back like tendons.  The scars will never fully heal but more than that, my children will never feel that love I have for them because their emotions for me their mum, have been taken away in all that heap of abuse.  

Trauma informed work: the key to supporting women

Jo Sharpen has worked for AVA - Against Violence and Abuse for 12 years, managing the children and young people’s project and then as policy manager.  Prior to this she worked for the Institute of Psychiatry as a researcher and then at Eaves Women’s Aid for several years, in a refuge. As well as working for AVA she is also a freelance consultant, researcher and online counsellor.
 

“Some people think that a trauma-informed environment is putting a plant in a room!”

- Woman with lived experience

A generally accepted definition of trauma is ‘an event, series of events, or set of circumstances that is experienced by an individual as physically or emotionally harmful or life threatening and that has lasting adverse effects on the individual’s functioning and mental, physical, social, emotional, or spiritual well-being.[1]’ Domestic abuse is clearly a form of trauma, made all the more complex due to the fact that it is planned yet unpredictable and takes place in the context of a relationship.

Research shows a significant overlap between experiences of abuse, substance use issues, and mental health. Up to a half of women with dual diagnosis of mental health and substance use issues have experienced sexual abuse.[2] Between 60-70% of women using mental health services have a lifetime experience of domestic abuse[3]. Women who have experienced domestic and sexual abuse are 3 times more likely to be substance dependent than non-abused women[4]. These figures demonstrate a clear need for a more trauma informed approach to supporting women experiencing domestic abuse and multiple disadvantage. However, as this Spotlight series shows, access to gender specific, trauma-informed mental health services is often lacking for survivors of abuse.

“They don’t look below the surface as to why you are using. When a crisis hits, it’s never just about one thing. We need a service that deals with all our issues, not in silos.”

In our recent report, in conjunction with the Make Every Adult Matter coalition, Agenda, and St Mungo’s, ‘Jumping Through Hoops’ we spoke to survivors of abuse and multiple disadvantage who told us that statutory mental health services were the most difficult to access. Women told us that if they missed appointments, cases were often closed and they would need to be re-referred. Our report concluded that ‘non-engagement is therefore seen as a refusal of services, not a common symptom of mental health, trauma and complex needs, when sometimes attending appointments can feel overwhelming and frightening’.

These sentiments were echoed in our recent research for the National Commission into women facing domestic and/or sexual violence and multiple disadvantage. Our peer researchers, all women with lived experience of these issues, interviewed 29 other women with similar lived experience and found that mental health was the overall dominant narrative across all interviews and surveys, regardless of experience, age or any other individual characteristic.  Combined with long waiting lists, short term therapy, a lack of consistent practitioners and constantly having to re-tell their stories, women’s experiences of abuse and trauma were compounded and the experience of trying to access support was re-traumatising in itself.

The women we interviewed for both reports were very clear that practitioners needed to develop a more trauma informed approach.  Past experiences of trauma and complex needs can sometimes lead to conditioned behaviours, which serve as a psychological defence or coping strategy for women but may feel very difficult to understand for an untrained worker. In fact, some practitioners admitted that they found some women’s presenting behaviours difficult to understand and respond to. One specialist complex needs worker with Women’s Aid described her relational way of working whereby she takes time to sit, talk and listen. “Simply having a cup of coffee with someone, makes them feel human. You get told more, you may find out stuff before the more relevant service due to creating an informal, trusting, person-centred relationship.”

Services that embrace ‘resilience over pathology’ are ones that women are much more likely to use and feel supported by. A shift from ‘what’s wrong with this person?’ to ‘what happened to this person?’ is the essence of this approach. The Mapping the Maze report highlights the important role the voluntary sector plays in supporting women’s mental wellbeing, with 43% of women’s mental health services identified being run by the voluntary sector, who offer specific women-only support services. However, these vital services and a trauma informed understanding cannot just be the role of the voluntary sector. There are often challenges to partnership working, but the ‘Jumping through hoops’ report shows how co-ordinated approaches, rooted in trusting relationships with informed and trained practitioners, are critical to developing genuine, meaningful support for women who have experienced trauma.

For more details of AVA’s training on creating trauma-informed services, please visit our website.

 

Follow our Spotlight on domestic abuse and mental health for more blogs, podcasts, guidance and more 

 

[2] Royal College of Psychiatrists (2002) Co-existing problems of mental disorder and substance misuse (dual diagnosis): an information manual

[3] Trevillion, K, et al (2012) Experiences of Domestic Violence and Mental Disorders: A Systematic Review and Meta-Analysis, Plos One, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3530507/

[4] Rees, S., Silove, D., Chey, T., Ivancic, L., Steel, Z., Creamer, M., Teesson, M., Bryant, R., McFarlane, A.C., Mills, K.L., Slade, T., Carragher, N., O’Donnell, M & Forbes, D. (2011). Lifetime Prevalence of Gender-Based Violence in Women and the Relationship With Mental Disorders and Psychosocial Function. Journal of American Medical Association, 306:5, 513-521

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The role of the mental health representative at Marac

Alison Eley is the Named Nurse for Safeguarding Children, Domestic Abuse and Marac lead for South London and Maudsley NHS Foundation Trust. Alison has previously worked as a mental health nurse in a number of services in East London and has represented mental health services at various London Maracs for the past 11 years. She has also lectured in domestic abuse at City University of London.

Being asked to represent your mental health trust at a Marac meeting could make you feel a number of things. You might see it as a great learning opportunity. Alternatively, it may appear to be just another meeting in your diary. It might even seem daunting if you’ve never attended one and don’t understand the process or your role in it. There could be the assumption that your attendance is enough in itself to demonstrate agency sign-up and involvement.

I can recall having both of the latter responses when I first attended a Marac meeting many years back. Over time, however, I have come to appreciate and advocate the importance of Marac representation and processes being embedded across all mental health services. Mental health staff shouldn’t feel intimidated or doubt their role, as they can have so much to contribute to the action planning. And most importantly, they can help ensure victims/survivors access services they may desperately need.

If you’ve been asked to be a representative, a good start would be to ask to shadow any current representative from your trust, to get an idea of what the role involves. It can be a shock to take up the role only to discover the amount of preparation and follow-up work required. Find out if your local authority has any Marac training that you can access. SafeLives also offer free e-learning packages via the SafeLives Community. 

Make friends with your Marac co-ordinator; they are invaluable in tracking actions and providing information. Contact your trust DVA lead to see if there has been any guidance produced in-house, or any meetings that take place to help navigate the process.

It is important to familiarise yourself with your organisation’s information sharing and record keeping protocols, to ensure you are following your internal policy correctly. You will need to undertake careful research prior to the meeting, and attend prepared to share information, participate in proactive discussion and to assist in action planning, where appropriate. It is not enough to merely attend on a passive basis. The success of Marac depends on the involvement of all the agencies attending.

Ensure you have booked enough time in your schedule to undertake accurate prior research and subsequent actions. This can take a lot of time, depending on the number of cases being discussed. Even if there are few cases known to mental health services, the cases may be so complex that it can take hours to extract the required details and action outcomes. In extracting information to be shared, remember that this needs to be relevant, focused and proportionate to the case being discussed. Individual discussions in the meeting are time limited, so providing huge tracts of past history over many years, irrelevant facts or any personal beliefs held is neither helpful nor needed. Nor will it sit comfortably with information sharing agreements.

Ensure that cases are flagged on your electronic system, as a third party entry. This may be via an alert, or ‘red triangle’. It is crucial to flag cases up as having come to the attention of Marac. Victims and perpetrators of domestic abuse may present to different services within an organisation, and it is important that whoever picks up the case is aware of potential risks involved. It also helps workers to monitor ‘repeat’ cases. If undertaking a check on addresses, be aware of any other vulnerable people in the household who may not be included on the research list. This information can make a substantial difference within a case. We must consider the effects of domestic abuse on children and young people within a family or situation. I have come across a number of cases where CAMHS and/or perinatal staff have been involved, and have not previously been aware of domestic abuse within a family. It’s a crucial part of your role as Marac representative to reach out to and engage a range of clinicians within the trust.

If any person known to your trust is being care co-ordinated within mental health services, ask their care co-ordinator to liaise closely with you or if appropriate, attend the meeting for that one case. It’s important that you spend some time explaining to them the Marac process and their role within the meeting. Always ensure that you seek approval from the Marac Chair and Co-ordinator if you are inviting a member of staff to attend.

There are a number of actions you could offer at Marac. As one example, if you have reason to believe that the service user is needing urgent support, you might suggest to the Marac that you ask the care co-ordinator to issue an appointment earlier than planned. Other Marac representatives may have limited knowledge as to specific mental health diagnoses and the risk implications of them. Here the mental health representative can share their knowledge, enhance understanding and reduce stigma.

This might also lead to joint working outside of the Marac process: I have seen excellent joint training being provided in one mental health trust, in partnership between personality disorder services and DVA teams. There is real potential to develop shared learning opportunities, and to promote local service knowledge at a time where the health landscape can frequently shift.

Some cases on the Marac agenda may state that the people involved have mental health problems, but they are not known to secondary services. The role of the Marac rep here would be to help the meeting consider whether they are receiving support within primary care, what the thresholds are for higher tier services and/or whether they need help with accessing services. External agencies may not be aware of referral processes, how to access mental health services locally and the nature of these services. The Marac representative can provide an educative role, providing this information.

Another benefit of attending Marac is being in a position to potentially identify areas of your service where there are gaps in Marac referrals or indeed where there are high instances of clinicians working with victims and perpetrators. In one borough, it became noticeable that a high number of perpetrators were known to a therapeutic community team. This provided an opportunity to offer the team more focused support around working with perpetrators, in order for them to be better able to identify risk indicators attached, and to promote links with external agencies that could assist.

Finally, if there are a number of Marac representatives from your service, ensure you are meeting on a regular basis to discuss and log activity, monitor hotspots, consider how to embed Marac knowledge in directorates and services and to share information. Consistency of approach by Marac representatives in a borough – and indeed the organisation – means that all Marac meetings and cases discussed receive the same high quality input. Regular meetings can help you to support each other; knowing that there are people in-house who understand the work involved and possible challenges helps. Working together and promoting Marac brings so many benefits to the both the organisation and to victim/survivors and this cannot be underestimated.

Follow our Spotlight on domestic abuse and mental health for more blogs, podcasts, guidance and more over the coming weeks.

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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.’

Note:

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.

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