The Recovery Letters: Addressed to People Experiencing Depression

James Withey, a trained counsellor who worked in social care for 20 years, was diagnosed with clinical depression, attempted suicide and spent time in psychiatric hospital and crisis services where he developed the idea for The Recovery Letters. He met Olivia Sagan, Head of Psychology & Sociology at Queen Margaret University, Edinburgh, and a chartered psychologist and former counsellor, when she contacted him directly as she had seen The Recovery Letters website. Both keen to work together to do the book, and with the mix of academic backgrounds and personal experiences in mental health, it was a great match. 

In 2012, The Recovery Letters was launched to host a series of letters online written by people recovering from depression, addressed to those currently affected by a mental health condition. Addressed to ‘Dear You’, the inspirational and heartfelt letters provided hope and support to those experiencing depression and were testament that recovery was possible.

Below are two letters from the book:

Read letter one here

Read letter two here

 


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Simon McCarthy-Jones talks to Human Givens

McCarthySimon McCarthy-Jones, author of Can’t You Hear Them?, talks to Human Givens about what is known – and what has been ignored – in explaining the experience of hearing voices. 

The experience of ‘hearing voices’, once associated with lofty prophetic communications, has fallen low. Today, the experience is typically portrayed as an unambiguous harbinger of madness caused by a broken brain, an unbalanced mind, biology gone wild. Yet an alternative account, forged predominantly by people who hear voices themselves, argues that hearing voices is an understandable response to traumatic life-events. There is an urgent need to overcome the tensions between these two ways of understanding ‘voice hearing’.

Read the interview here

 


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Borderline Personality Disorder: One Step at a Time

Tracy Barker, author of A Sad and Sorry State of Disorder, is an expert by experience on how to live with and manage borderline personality disorder (BPD), now a happily married home maker committed to raising awareness of BPD, she has written an emotional and honest piece on how it feels to have BPD, the struggles and how to deal with it; one step at a time.

One step, then take a break –
a few days, to recover.
One step, then rest
before embarking on another.

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Peace Inside: How meditation can transform your mental health

peaceSam Settle, editor of Peace Inside, examines how the time tested practice of meditation – sitting in silence and paying attention to the breath – is helping people maintain a healthy mind behind bars.

“If you don’t go into prison with a mental health problem, then you’re very likely to pick one up while you’re there. And if you do have a pre-existing condition – and many people who come into prison do – it’s probably going to get worse while you’re inside.” So said the head of the mental health team at an Oxfordshire prison, speaking recently to yoga teachers at a training run by our charity, the Prison Phoenix Trust (PPT). Part of the PPT’s work is setting up yoga and meditation classes in prisons, training and supporting qualified teachers for this unusual work. There are currently 144 classes in 79 UK and Irish prisons.

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How important is empathy within our care system?

Frightened

Bo Hejlskov Elvén is a Clinical Psychologist, and author of Frightened, Disturbed, Dangerous?, Disruptive, Stubborn, Out of Control?, Confused, Angry, Anxious? and Sulky, Rowdy, Rude?, based in Sweden. He is an independent consultant and lecturer on autism and challenging behaviour, and an accredited Studio III trainer. In 2009, he was awarded the Puzzle Piece of the Year prize by the Swedish Autism Society for his lecturing and counselling on challenging behaviour. 

Frightened, Disturbed, Dangerous? Those words are often used to describe people in psychiatric care. Historically, schizophrenia is one of our oldest diagnoses still in use. Our oldest diagnoses describe people whose behaviour was unpredictable and clearly different than that of other people. Today, we still see descriptions of people with psychiatric conditions described as disturbed and dangerous despite all the knowledge we have contradicting those descriptions. The words we use to describe people affect the way we think about them and our methods for working with them. If we believe that a person is dangerous, we will keep our distance and even react faster to the person’s behaviour. We are also more prone to react with force.

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Hearing Voices, Living Fully Launch Party

Claire Bien, Associate Director of Communications at The Connection, Inc. and trained facilitator at the Hearing Voices Network, shares her thoughts and a few fun snapshots from the launch party for her new book, Hearing Voices, Living Fully: Living with the Voices in My Head.

Bien 1 Continue reading

‘The Forgiveness Project’ book – 12 years in the making

forgivenessAuthor Marina Cantacuzino explains how a journalistic idea evolved into the charity  The Forgiveness Project; dedicated to building understanding, encouraging reflection and enabling people to reconcile with pain and move forward from trauma in their own lives. Eventually, her work with the charity led to the publication of The Forgiveness Project: Stories for a Vengeful Age – Marina explains how it came about and why she wanted to create a book from the stories she’d heard and the messages she’d learned.
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Personality disorder: What about recovery?

Exploring the process of recovery from personality disorder, and how this can be achieved, Heather Castillo, author of The Reality of Recovery in Personality Disorder, provides some insight about the concept of recovery in relation to personality disorder.

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Twenty years ago, personality disorder was defined as enduring and inflexible and was usually considered untreatable.   If I had moments of doubt, regarding embarking on a study of this human puzzle, they weren’t many.  The adversity experienced by those who had attracted the diagnosis was too compelling.  The assumption that professionals know best how conditions should be defined, and how services should be configured, was a similarly popular perception at that time.

My subsequent twenty-year journey concerned research with people diagnosed with personality disorder.  Driven by the ideas and needs of service users, our ensuing service developments aimed to build a new model of understanding and progress, one which could even make the old ways obsolete.  The early 2000s proved to be a fertile time for innovation when the Department of Health invested in pilot services which allowed a kind of exploratory latitude that I have not experienced before or since.  This gave us heaven-sent liberty to create a new and very different kind of service and a golden opportunity to extend our research studies.  At this time there was no agreed rationale of recovery for those diagnosed with personality disorder and few researchers had sought the views of service users regarding this.  We wished to continue to explore research methods that incorporated subjective accounts of recovery because we believed that professionals would find little guidance about what might help recovery from a medically-oriented randomized controlled trial.

The concept of recovery essentially arose in the service user movement, however, it was an idea which was soon hijacked by mainstream services becoming a clinical concept concerned with cure.  This was experienced as an unrealistic expectation and a burden to get well.  The word recovery has different meanings suggesting that conceptual clarity is necessary.  First is the traditional concept of recovery as cure which is located within an illness framework.  Second is the personal definition of recovery which has emerged from service user narratives.  These accounts emphasize the understanding of recovery as a process that can still take place in the presence of symptoms and disability.  Recovery is about finding abilities, possibilities, interests and dreams.  This was a crucial concern for our research group members and they set out to define recovery in their own terms.  They believed that the term recovery implied returning to a previous state of being, whereas members were seeking to create a new future, the future they wanted.  Standing on the firm foundations of a clearly defined concept of personal recovery, by 2004 we had established our new service.  I have long believed that, as human beings, thriving is our default setting.  Up to now this had not proven to be the case for our service users, however, the homeliness and peacefulness of the new service and the sense of hope that permeated the air had an effect on all of us.

Living too long with untenable emotions and in a state of chronic hyper-arousal, people with a personality disorder diagnosis frequently adopt dysfunctional behaviors to numb unbearable feelings and to swiftly bring their mood down to a manageable level.  Hurting the body can create temporary calm because of endorphin release.  Such behaviors include self-harm and substance misuse.  This is how people have coped and, for many, they become deeply ingrained coping strategies.  The damaging expression of pain needs containing measures, therefore, to create psychological safety at the new service these self-destructive behaviours needed to be actively challenged.  An Acceptable Behaviour Policy was created in collaboration with service users and administered by them.  If someone broke the rules laid out in this policy there were consequences, and that person would be invited to a community discussion with peers.  During the course of our research 51 (85% of participants) discussed the use of negative coping strategies and 46 (over 76% of participants) reported a dramatic reduction in their use, suggesting that the concept of boundaries had become internalized.

Initially we were engaged in developing healthy attachment in terms of safety and trust, feeling cared for, a sense of belonging, and learning acceptable boundaries.  Next we discovered that only when this was sufficiently consolidated did service users begin to learn to contain their past experiences and build necessary skills to progress.  Meaningful therapy cannot take place, no matter how desperately it is needed, if trust does not exist and if behaviour is chaotic, risky and destructive.  Healing is about integrating experience by making sense of what has happened.  Prior to this stage, reality often proved to be unbearable and making sense out of traumatic experiences and child abuse is a difficult thing to do.  This marked the long process of beginning to re-frame traumatic experience.   However, a focus on a deficit in skills, and all that has gone wrong in the past, can create a sense of hopelessness.  Therefore, the fostering of hope and the building of confidence became vitally important in activating the internal resources necessary to conceive of and pursue dreams and goals.

Supporting recovery is about helping people to build self-esteem and identity and to find valued roles in society.  This began to translate into internal changes concerning sense of self and external achievements in the various domains of social inclusion.  However, despite progress, significant fears and barriers to the concept of recovery were also highlighted in relation to risking what progress had been made.  Because the word recovery could potentially become synonymous with the idea of loss of support, it became essential to further define it in a tenable way.  As a result, the concept of Transitional Recovery was born, meaning that progress would be defined as an ongoing journey of small steps, involving the retention of new-found healthy attachment, and new structures were incorporated into the service to help build confidence with outdoor-well-being pursuits and social inclusion initiatives.

Developments which stemmed from the  unique knowledge of service users, about what would best support them and help them to progress, shows that it is possible to work effectively with a relatively large number of people with a personality disorder diagnosis, well in excess of a hundred at one time, at different stages in their journey of recovery, many of whom had not made progress in other service settings, resulting in significant financial savings to the health, social care and the criminal justice system.

Dr Heather Castillo worked for many years in Mind organisations in Essex, developing advocacy for people with mental health problems. She has worked with service users, training and supporting them to become legitimate researchers in the field of mental health. In 2004 she helped to set up, and became the Chief Executive of The Haven Project, which began as a Department of Health National Innovation Site for the support and treatment of personality disorder. In 2011 she completed a doctorate at Anglia Ruskin University, UK, about the process of recovery in personality disorder. She lives in Essex, UK.

Learn more about The Reality of Recovery in Personality Disorder

Independent Mental Health Advocacy: A glass half full?

Independent Mental Health Advocacy is all about giving a voice to those whose rights have been compromised. Hot on the heels on the release of their new book Independent Mental Health Advocacy – The Right to be Heard, co-authors Karen Newbigging, June Sadd, and Karen Machin explain the role that IMHAs play within mental health services, and the principles and practice of the role.

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The Mental Health Act allows for people to be detained in hospital and, in specific circumstances, treated against their will. Changes made in 2007 extended these powers into the community with Community Treatment Orders, with the safeguard of a new statutory role of Independent Mental Health Advocacy (IMHA).

In researching IMHA across England, we heard about its value and how it had helped people get off a section quicker, or negotiate a change in medication or leave.  For some people, it enabled them to feel valued and built their self-confidence so that they could advocate for themselves. For a small number of people, however, it seemed like IMHA services were maintaining the status quo, giving the appearance of protecting individuals’ rights without really changing their situation.

As a team, and perhaps particularly because some of us have experience of being sectioned, we were troubled by this finding.  How could an apparently progressive step for human rights be misused or misinterpreted in this way? This led us to reflect on the grassroots nature of advocacy and how its introduction as a statutory duty could have fundamentally, but not necessarily, altered its nature.

Advocacy has a long and honourable tradition in mental health, where the experience of being detained is profoundly disempowering. Limited choices or inadequate support and treatment from mental health services have raised questions about upholding people’s rights and the availability and quality of care.  Incidents that have involved people at specific risk of discrimination have brought this into sharp focus, including the higher rates of detention of African and African-Caribbean people under the Mental Health Act, the poor treatment of people with learning disabilities and, in extreme circumstances, deaths of detained patients following restraint.

The purpose of IMHAs is to provide a safeguard for people detained under the Mental Health Act and to enable individuals to have a greater say in decisions about their care and treatment.  In this book, we explore this type of advocacy drawing on available research, including our own. We take a critical look at IMHA services, considering their foundational roots and the factors that shape how these are provided and that will have a direct bearing on their impact.

The development of IMHA services has to be understood and evaluated in context and the first part of the book is devoted to this. We start by exploring the disputed terrain of mental health and different perspectives on what this means, the origins of advocacy in the survivor movement and the emergence of IMHA services, borne out of the lengthy and contested process of the reform of the1983 Mental Health Act.

Our individual values, experiences and reading of the research on experiences of compulsion raised questions for us about the fundamental purpose of mental health legislation and its value, pointing to much-needed reform.  Although this research reinforces IMHA as an essential safeguard for protecting rights, the interpretation of the legal framework often privileges negative rights (such as refusing treatment), thus overshadowing more substantive rights (the rights to health and civil and social participation). The second part of the book keeps the latter focus in mind, as we discuss how IMHA services should be commissioned and provided, and the skills that IMHAs need to enable an individual to self-advocate, and mental health services to listen.

Access to IMHA services is still problematic and people who might need this form of advocacy the most are often the least likely to have access. We consider how well IMHA services are being commissioned and provided so that they are available and suitable for everyone, such that they take account of prior experiences of discrimination and how these can be reproduced through the mental health system, reinforced by legislation and in advocacy provision.

The relationship between advocates and mental health professionals should be unsettling and can be fraught for various reasons, including a lack of appreciation of the advocacy role and a professional assumption that they are best placed to be the person’s advocate.  Nonetheless, this can also work well, and we identify a framework for understanding such tensions and possibilities for constructive working relations.

It for these reasons that we conclude by looking at the future of advocacy, as a glass half-full/half-empty scenario. This deliberately evokes the paradox described by Peter Campbell (2009:51) that although the right to advocacy is ‘partly recognized, service user influence over its provision is diminishing’. Readers will decide for themselves whether this is a glass half full or half empty!

We have found that the process of coming together and co-writing this book has been a really rich one. We brought different perspectives and experiences to the task and hope that this has resulted in a penetrating analysis of IMHA that both highlight the complexities and suggest some ways in which these can be thought about and addressed. We hope that our book will contribute to shaping future development so that, ultimately, people detained under the Mental Health Act really do have a say, and that their rights, beyond the narrow confines of the Act, are promoted.

Karen Newbigging is a Senior Lecturer at the Health Services Management Centre, University of Birmingham and is active in advocacy research and development. June Sadd, an independent survivor consultant, educator and researcher, draws on her personal experience of the psychiatric system in her work. Karen Machin works freelance in mental health from a perspective of lived experience. Learn more about Independent Mental Health Advocacy – The Right to Be Heard.

 

Can children be depressed?

It may be hard to believe that children can experience depression at a very young age, but as the NHS explains, “10% of children in Great Britain aged between 5 and 16 have a mental health problem, with 4% of children suffering from an emotional disorder such as anxiety or depression.” Lloyd Jones, author of The Princess and the Fog, shares his personal experience with depression as a child and adult, and explains how he learned to cope through his art.

This content was originally posted on Lloyd’s blog.

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‘Depression has been something of a running theme in my illustration work for a long time and The Princess and the Fog is obviously no exception. It is a subject that is very  near and dear to my heart as I’ve personally suffered from depression for most of my life.

I first felt as though I had a tendency towards depression when I was a child. I had only a cursory understanding of what it was – namely that it made you feel tired and sad and disinterested in things much of the time – which I felt described me, but I didn’t really know what it MEANT to be depressed or what one was supposed to do about it. I remember I confided in an adult – a family member, I won’t say whom – for some advice. “I think I’m depressed,” I admitted. “What have you got to be depressed about?” they replied, fairly astounded. And that was the end of the discussion. I suddenly felt as though I hadn’t earned the right to be depressed. I was just a kid. I didn’t have anything to be depressed about. I suddenly felt so embarrassed and so intensely alone. I don’t really remember what happened after that but I know that for a long time I wasn’t able to talk to anybody about it again.

It wasn’t until I was 21, in the second year of my BA, that I was first officially diagnosed with depression and put on fluoxetine. Suddenly I was allowed to be depressed. It was okay to talk about it and there were pamphlets and medicines and all sorts of things I was allowed to know about. I had had some experiences in college with herbal remedies and counselling that only seemed to be taken semi-seriously and didn’t really do much for me but this was the real deal. Depression as a theme started seeping into my illustration work as something I finally understood enough to be able to communicate. Projects like the Short Term Diaries of the first year of my MA gained some popularity as an alternative therapeutic tool, and I seemed to reach a lot of people with my short graphic memoir zine There’s A Hole In My Chest and its follow-up There’s a Hole In Your Chest. I was meeting and communicating to increasingly more people who felt the way I did.

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Excerpt from ‘There’s A Hole In My Chest’

For the second year of my MA I wanted to do something different, having felt a bit stifled by the Short Term Diaries towards the end of the project. I liked the responses I got to my Hole in Chest books so I thought it might be a good idea to keep the same theme rolling. Writing and illustrating a picture book had been on my bucket list for a while so I thought I’d give it a try.

When I began writing the story I had to do a lot of research into childhood depression to make sure I tackled the subject responsibly and respectfully, and to make sure I got my facts straight. I discovered after struggling to find much that childhood depression was still a relatively new concept and that up until recently it was believed that children could not become depressed. Suddenly I had a bit more context for the loneliness I had felt as a child. There were hardly any books for children with depression out there. There were dozens of books and pamphlets and cartoons and other media for children living with just about any other mental illness you could think of, but not depression. I realised that if I made one, it could actually be really important to someone. A year and a half of working on it later, and here we are.

If I had had a book like The Princess and the Fog when I was a child, I wonder how different things would have been. If I’d known that I wasn’t the only person out there feeling this way, I can’t help but think I might have felt a lot less isolated and desperate, and  perhaps because of that I would have had a better understanding of how to deal with it. That was the book I tried to create. If The Princess and the Fog helps even one kid out there feel like they don’t need an excuse to be depressed, that there’s somebody else out there who’s been through the same thing and survived, and that they can do the same, then I’ll have done my job and I’ll be happy.

Lloyd Jones lives in the south of England. Lloyd has a first class honours degree in Illustration from the University of Portsmouth, an MA in Sequential Design and Illustration from the University of Brighton and he is currently working on a PGCE FE from the University of Southampton. He has learned to live with his fog, rather than suffer from it. Learn more about The Princess and the Fog

Find out more about depression and anxiety in children here.

 

Goodreads Book Giveaway

The Princess and the Fog by Lloyd Jones

The Princess and the Fog

by Lloyd Jones

Giveaway ends August 19, 2015.

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at Goodreads.

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