1 in 4: time to change and end stigma and discrimination.

Speak Up!  This article appeared in the August issue of Mental Health Nursing and is reproduced here by the author.  Benjamin Gray, Service User Expert, Rethink Mental Illness.

1 in 4: time to change and end stigma and discrimination.

Dr Benjamin Gray, a service user with lived experience of schizophrenia, explains his work with a charity to campaign against stigma and discrimination.

According to official statistics, one in four people will experience some kind of mental illness. Even today, mental illness carries with it strong feelings of stigma, exclusion, fear and discrimination. These affect all aspects of life, from those as simple as making friends and socialising to being able to work and find employment. Many people who experience mental illness spend their lives on benefits at the margins of society. Stigma about mental illness is still a strong, pervasive and undesirable force.

According to a carer of someone with mental health problems: ‘I think within mental health one of the biggest challenges is stigma. If you’re a carer for a disabled child, if you’re a carer for somebody with a learning disability, if you’re a carer for someone with cancer, the instinctive reaction is “Oh, you must be an angel, you’re having to deal with that, poor thing” you know, it’s a tragedy. With mental illness there’s still the stigma of “Hold on, is it catching?”.

In the words of another person with schizophrenia: ‘I go out in the community and they arrange housing for me, but it never lasts long. They know I’m different so they pick on me and bully me. They smashed my windows and call me names, so it never lasts long and I end up back in hospital’.

Images of mental illness in the media and among the public are very negative too, generating feelings of fear, disbelief, guilt and chaos. These can be controlled through better information about mental illness, optimism, promoting routine living, better social and employment expectations and hope.

An important question arises: If 25% of people suffer from some kind of mental illness, is the experience of mental illness so aberrant, abnormal and wrong? There is a strong case to be made that mental illness is just like any other kind of illness, in need of sympathy, care and support. It is a common human experience that should not be stigmatised.

To begin to end discrimination and stigma, Rethink Mental Illness has recently run a very well received advertising campaign, Time to Change, both on television and by posters showing a brain with a bandage saying: ‘If only’, indicating the promise of healing mental illness and the hope of recovery.

The research team has also organised a number of lived experience advisory panels (LEAPs). These bring people with lived experience of mental illness and their carers together so that they can shape the direction of individual research projects. The LEAPs shape the important work that Rethink Mental Illness does to end stigma, exclusion and discrimination against people with mental illness.

1 in 4 means that mental illness should not be stigmatised. It is a common human experience that many people encounter in their lives.

Ending stigma and discrimination will no doubt be a difficult and unsettling journey for many, but if some health professionals and people in society continue to silence and stigmatise mental illness, the consequences may be far more serious.

Denial of stigma and exclusion also denies the possibility of opening up new approaches and avenues of debate that may in turn influence more democratic alternatives in mental health. Psychiatry and mental health, rather than doing things to or for people with mental illness, must begin to work with them to end stigma and discrimination.

Write for MHN!

(Speak up! is an informal opportunity to for you to write for Mental Health Nursing about anything relevant to you and your fellow members. It can be subjective, serious or light-hearted, and you won’t be expected to provide references. If you have something to say, then just contact the editor to discuss style and deadlines. Email: mhneditor@gmail.com).

Peer Support in Hospital—A Shared Journey.

Peer Support in Hospital—A Shared Journey.

This article has just appeared in Schizophrenia Bulletin and is reproduced here by the author.
Benjamin Gray, Service User Expert, Rethink Mental Illness.

I have just spent a month in a psychiatric ward. In fact, as I write this, I’m still here. It’s my third relapse in 10 years, and the first time it lasted for nearly a year. Being in hospital is a painful experience, but it’s also a personal journey, and for me it was forming friendships on the ward that pulled me through (and continues to do so).

I’m diagnosed with schizophrenia. When I hear voices they are very negative and frightening, often saying things in a demonic hiss like “I’m an abuser” or “I’m coming.  You wait until you see what I’m going to do to you!”.

Being on the ward is often isolating and frightening, with people shouting at their voices and sometimes being restrained by staff. It would be better in my opinion if there was more therapeutic contact between us and the staff and more time for one-to-one supportive conversations to aid recovery.

The good thing about being in hospital is that I started taking my medication again, which I had stopped for some days. But the other reason I started to feel better was as a result of friendships on the ward.

Befriending other people, getting their support, praying for others, and engaging in group activities, all aided in my recovery. By taking part in group activities like creative writing or music therapy, I became closer to people (not as a diagnosis of schizophrenia, bipolar disorder, or depression but as human beings with complex problems, emotions, and difficult past histories).  We talked about our personal experiences, emotions, and difficulties and supported each other’s gradual progress and journey toward recovery. Importantly, I realized we were all in it together—I wasn’t alone.

I especially connected with a 70-year-old woman, Becky, who needed the care of nurses, me, and other people on the ward to make her drinks and just to hold her hand to comfort her distress. She has schizophrenia and dementia and is unable to look after herself. Recently, I took her with me to the chaplaincy group, where she said a little about herself and her 2 sons, which was the first group she had attended in some months. This helped us both a lot, and we have become good friends.

Friendships—showing a little bit of love and caring for each other—make the time on the ward easier and more rewarding. It can be tough and not everyone likes going into hospital, but I think the important thing to remember is that we can all support each other. It may seem like a little thing, but having a good relationship with another human being makes all the difference.

(Schizophrenia Bulletin Advance Access published October 30, 2012).

Latest News (October 2012)

The LEAP is acting as a critical friend to the PRIMROSE project.

The main LEAP is comprised of 27 service users and carers.  It has offered feedback on topic guides for focus groups and also questions for the systematic review (protocol).

The LEAP Intervention Development Group (IDG) is a sub- group of the main LEAP and last met at the end of September.  The IDG is comprised of 8 service users and carers.  It has recently offered feedback on:

• Enablers and barriers to the intervention (a service in primary care run by GPs and nurses for people with mental health problems at risk of cardiovascular disease, CVD).

• Insights drawn from lived experience of mental illness on what the intervention/ service should look like and do in order to help people with mental health problems. 

• The IDG made comments on the ways in which the intervention/ service should be tailored for people, so as to be targeted to their health needs and making it more acceptable to service users.  This will make the service more acceptable and personalised, perhaps increasing uptake so people attend appointments, and ensure that the service is relevant to people's individual needs.

• The IDG has also offered feedback on preliminary themes from focus groups with service users and carers.

• The LEAP IDG has drafted some recommendations to be considered by the PRIMROSE project.  For example, there was a positive response in the group to the fact that the intervention appears to be proposing not just medication (statins) but also small one step at a time goals for people to reduce risk of cardiovascular disease.  This makes behaviour change (diet, exercise, smoking) more realistic, achievable and person- centred by people’s choice.  In addition, the IDG proposed that service users and carers should be involved in some aspects of the training of nurses. 

20 Years Too Soon- Become a Physical Health Champion

People with severe mental illness die on average 20 years younger than the general population, often from preventable physical diseases (such as heart disease and diabetes).

Rethink Mental Illness is campaigning to ensure that the physical health needs of people with mental health problems are not neglected and calling for physical health champions.

Read more about the campaign: http://www.rethink.org/how_we_can_help/our_campaigns/current_campaigns/20_years_too_soon.html

Become a physical health champion:
http://www.rethink.org/how_we_can_help/our_campaigns/current_campaigns/sign_up_to_become_a.html

Latest News (August 2012)

Latest news about the PRIMROSE Project:

• Focus groups are nearing completion with service users, carers, GPs and nurses working in primary care.
• These focus groups are being fully transcribed and analysed by a qualitative group.
• The systematic review is nearing completion.  This reviews the literature and randomised control trials on how the service/ intervention might best work, nurse training, service users' experiences and the acceptability of the service to people with mental health problems.
• The next LEAP Intervention Development Group is scheduled for late September at Rethink Mental Illness in London.

P's Story: "My full recovery aimed at harmonising four areas".

I found myself in psychiatric hospital quite unexpectedly.  At that time I was a complex-ridden young man with an exact mind and idealistic attitude to the world.  My family lacked love and the atmosphere was cold and grim.

I was diagnosed with schizophrenia and three times a day was given painful injections with enormous doses. Slowly, I started coming back to reality but I rebelled, feeling that my problems could not be cured solely by medical treatment. 

I was only taking medicines, which made me feel very ill.  When after two years I tried to give the drugs up, strange thoughts and mystic experiences returned.  I was taken to mental hospital for the second time.

To sum up, I can state that my full recovery was based on activities aimed at

harmonising four areas:

·         Body – diet, hygiene, sport.

·         Mind – widening of consciousness, visualisation, astrology, foreign languages.

·         Emotions – love, forgiveness, courage, tolerance.

·         Spirit – faith, meditation, prayer.

The most important thing though was the decision for a healthy and responsible life, what I had been striving for over all these years.

T's Story: "They threatened to drive me completely insane".

It all started in January 2007.  I went to bed with a sudden feeling of severe dread that someone was out to get me.  I actually didn't go to sleep that night.  The voices talked me into thinking that I was being possessed which caused me to check myself into a mental health facility, during which time they continued to verbally abuse and denigrate me, saying I was worthless and that they were going to kill me.

My parents had to come and get me out.  Shortly after my release, the sleep deprivation continued (they simply talk loudly to me throughout the night), leaving me barely functional at work, leading ultimately to my resignation and loss of my job.  They commanded me to destroy much of my computer equipment and personal ID (driver’s license, social insurance card), which I did after they threatened to drive me completely insane.

They can impose feelings of nausea on me to disrupt my mood and sleep.  They can cause me to see visual hallucinations and they completely control my dreams every night.  They still wake me up every hour after 2 am.  They can also make me fall asleep.  They can make my fingers and face muscles twitch.  They can make you gag.

S's Story: "They loved to torture my mind".

I first started hearing voices in November of 2004.  At first I just heard people talking and couldn't understand them, they were mostly just outside my window.  I just ignored it.

Several days later I was watching TV and heard this great song coming from the next room, it was a black man and woman and I wanted the CD.  Then I realized I had no music turned on.  I searched the house and the basement and there were no radios on and I could only hear it from the one room.

All winter and spring I heard music.  Over the months I began talking to them every waking moment and they kept me without sleep for days at a time.  They said I was the most gifted psychic in the world.

I continued talking to them night and day and listened at times as they talked about me. I had long fights with them.  They loved to torture my mind.  They told me I was sexually abused as a child.

They wouldn't let me sleep for over three days and I kept seeing flashing lights all around the room.  I started drinking and I slept finally and seven days later my doctor put me in the hospital. They increased my medication and let me out after a week. My doctor kept increasing the medication.

Now I hear the music when it's quiet and sometimes the voices but not so bad.  This is my first step in recovering from the shambles my life has become and moving on.

K's Story: "I believe that fear, shame and secrecy only create more trauma and fear".

I have been hearing voices for most of my life. I am currently 51 years old and a trauma survivor.  As far as I can recall, I first became aware of the voices when I was in my late teens to early twenties, which coincides with the first instances of abuse.  As a child I was extremely shy and lived in my own world of imagination.  My youngest brother who is 4 years older than I am was diagnosed with paranoid schizophrenia in his mid- teens, which of course was extremely upsetting and traumatic for everyone in our family.  I also learned many years later that one of my female first cousins developed schizophrenia in her late teens, close to the same time my brother became ill.

When I began to hear voices, I made up my mind that I would never tell anyone, because I was afraid that I would also be diagnosed as schizophrenic.  From the very beginning I was very curious as to why I heard these voices.  Some of my theories were: hearing voices of people who were deceased, mental telepathy, angels or spirits, stray radio signals which my brain was somehow able to pick up, and mental illness.

About 10 years ago, I was diagnosed as having Post Traumatic Stress Disorder, and was also diagnosed as DDNOS (dissociative disorder not otherwise specified). I have been taking medication for 10 years as treatment for depression and anxiety disorder, which has not had any effect that I am aware of on the frequency or duration of hearing voices.

Although I still don't make it widely known that I experience internal voices, I feel that I have come to terms with it very well. I no longer worry about the cause, and tend to simply view it as part of who I am as an individual.  I am hopeful that one day there will be much less social stigma attached to the phenomena and that more people will be able to feel comfortable in disclosing their own experiences.

I believe that fear, shame and secrecy only create more trauma and fear, which can become a vicious circle of self-loathing.  Much love and appreciation to those who are working to dispel the myths and misinformation which surround this very fascinating subject!

J's Story: "In my mind I was being followed and hunted down".

My psychiatrist asked me: "Are you hearing voices?”.  My voices told me to say: "No".  I was deep into my first psychotic episode which I would describe as a living nightmare.  In my mind I was being followed and hunted down.  It was like living on the brink of insanity.  Things started to fall apart.

I had a very young child to support with my girlfriend, although I still lived at my flat alone. Sleep was a big problem as I was not getting any.  I could not switch off.  I used cannabis to try to help me to sleep.  I was not eating much at all, just a couple of slices of toast in the morning and water.  Having a major feeling that my job was ultimately important I would wake up with the alarm and really struggle, but always turn up for work.

I called my girlfriend who was no help and hit a low point.  I visited the National Gallery on a day off and viewed ‘Sunflowers’ by Vincent Van Gogh.  I remember wanting to cut it to pieces with some scissors thinking how impoverished he was and what he had been through and how much his work was now valued. 

I woke up after minimal rest the next morning, basically collapsing with exhaustion.

L's Story: "Mental health can be a lottery".

Hi,

I presented with depression and had many years of unsuccessful treatment.  Drugs were not monitored and no-one could come up with a diagnosis.  I did lots of voluntary work and study and had to live near my family.  My mental health was up and down for well over 10 years.  

In 1998 I met a clever consultant, who eventually moved back to India.  I told him: “You are clever and you have cured me”.  My key worker said I would never see hospital again.  I am bipolar and although it carries a stigma, at least I am mainly positive.  Modern drugs make a difference.  

However, to start with I had two dreadful doctors, so mental health can be a lottery.   

Best wishes,
‘L’

People's Personal Stories- Share Your Story with the LEAP.

Here is my story of hearing voices that appeared in the Guardian:

'Hidden Demons': http://www.guardian.co.uk/society/2007/jun/15/socialcare

You are most welcome to share your own story of lived experience of mental or physical illness.

Email a page or so to: ben.gray@rethink.org

As this is a blog your story should be about a page.

Let me know if you want your name to appear or a nickname/ pen name or if you want your contribution to be anonymous.

Also, feel free to make comments, give feedback, start a discussion or contribute ideas (although you may have to create a gmail account for this, sorry?).

This is your blog so I hope you like it and that it's helpful.

Latest News (June 2012)

Latest News:

• Focus groups are underway with service users, carers, nurses and GPs.

• This personal blog has been developed as a way for the LEAP to keep up with the latest news about the PRIMROSE project. 

• It is a forum for the LEAP.  We welcome your thoughts, ideas and personal experiences.

The LEAP as a Critical Friend

The PRIMROSE project's LEAP is proving to be very popular.  27 people have joined the main LEAP. 

8 of these have joined an Intervention Development Group (IDG) to develop the intervention/ service to be piloted at the end of 2012.   The IDG met in early March 2012 as a workshop.  It discussed several key issues and themes:

• practicalities of how the intervention/ service might work;
• examples of good/ bad practice based on people's experiences;
• and ways forward for future meetings. 

The main LEAP has also provided feedback on:

• focus groups (service user topic guide); 
• how the intervention/ service might operate and potential barriers to its success;
• and systematic review protocol questions. 

The First LEAP

The first LEAP meeting was held in late January 2012 and was very well attended. 

Several of the members of the LEAP suggested a website to keep up-to-date with the PRIMROSE project and as a method for staying in touch with each other, so sharing their lived experiences and ideas in a personal forum. 

This personal blog has been created for LEAP members.  This helps in several important ways:

• It regularly updates people on the PRIMROSE project.
• It increases dialogue and participation with service users and carers.
• It publicizes the project and LEAP to a wider audience.
• People not on the LEAP (carers, health professionals, service users with physical health issues) may participate and comment, so widening participation. 

This is a personal blog and perspective of the members of the LEAP.  Views expressed do not necessarily reflect those of Rethink Mental Illness and the PRIMROSE team at University College London.

Welcome to the LEAP (PRIMROSE project)

About the PRIMROSE project

The PRIMROSE project is a large scale study run by researchers at University College London (UCL) in partnership with Rethink Mental Illness. People with mental health problems have an increased chance of developing heart problems.  The project aims to develop a training programme for nurses working in GP surgeries to provide better care. 

The Lived Experience Advisory Panel (LEAP).

The LEAP is a group of 27 people who use mental health services and carers.  Their experience is expertise that will help inform the direction of the PRIMROSE project.  This will, in turn, feed directly into the training of nurses to help people who use mental health services.

The LEAP is a critical friend to the PRIMROSE project.  The LEAP discusses important topics and matters that will shape the direction and content of the PRIMROSE project.

This blog has been set up to increase communication between LEAP members.  It is a personal blog and perspective.  It does not necessarily reflect the views of Rethink Mental Illness or the PRIMROSE project team at UCL.