This booklet was produced by The Hive, it is intended as a guide for voice hearers, carers and others seeking information. Thanks to all the contributions from people attending voices groups for their advice and input into this booklet. Julie McPherson and Dave Boyd, The Hive The Hive Royal Edinburgh Hospital Morningside Place Edinburgh EH10 5HF Tel : 0131 5376256 thehive@samhservices.org.uk 24 1 The Hive is an activity centre and coffee bar for in - patients situated within the grounds of Royal Edinburgh Hospital. The Hive is run by SAMH and is funded by NHS Lothian. SAMH is Scotland‟s leading mental health charity. At SAMH, we believe everyone has the right to EXPECT: MORE from life MORE from the people who support you Hearing Voices Groups in Edinburgh Inchkeith House Group Stuart Hyde and Alasdair Gormly run a group at Inchkeith House (137 Leith Walk, Edinburgh), on Fridays 2pm to 3pm.This group is open to anyone who hears voices. Please contact Alasdair Gormly on 0131 537 4530 for further information. Cambridge Street group This group is on Thursday‟s from 3pm to 4pm at:Cambridge Street House, 5 Cambridge Street, Edinburgh . This group is open to anyone who hears voices. Please contact either George Watson, Barbara Braner or Christine Hislop on 0131 537 8650 Hive Hearing Voices Support Group Wednesdays 2 - 3 pm in the relaxation room at The Hive, Royal Edinburgh Hospital, The Orchard Clinic Hearing Voices Support Group Tuesdays 4 - 5 pm in the Orchard Clinic. MORE from yourself SAMH believes that everyone can recover greater control of their lives and improved quality of life in spite of the difficulties they may have. This booklet was produced by The Hive, it is intended as a guide for voice hearers, carers and others seeking information. 2 23 Useful Books What is Hearing Voices? Living with Voices: 50 Stories of Recovery, Romme and Escher A new analysis of the hearing voices experience outside the illness model, resulted in accepting and making sense of voices. This study of 50 stories forms the evidence for this successful new approach to working with voice hearers. Accepting Voices Marius Romme, Sandra Escher New Analysis of the Experience of Hearing Voices Outside the Illness Model", in which thirteen people describe their experiences of hearing voices. Hearing Voices: A Common Human Experience John Watkins - A detailed description of a wide variety of voice hearing experiences - An overview of the theories accounting for how and why this happens - A range of practical techniques for coping with voices - Guidelines for applying spiritual discernment to hearing voices Strategies for optimising the personal value of voice hearing experiences Movies featuring Hearing Voices Some Voices A British film that deals sensitively with the life of a voice hearer (Daniel Craig) and the people around him. The Soloist A film about the friendship between a journalist and a homeless violin prodigy who hears voices. Starring Jamie Foxx and Robert Downey Jnr. People hear voices that have no apparent external source and feel that they are coming from someone or something else. This can be a very intense and frightening experience. People can hear one voice or many. The voices can be someone they know or not. Everyone‟s experience of their voices is unique. But it is not necessarily a sign of mental ill health. It is estimated around 4 % of the population have heard voices during their lives. The problem is not that people hear voices, it‟s how they cope with the voices. “ The best thing about the group is finding out you‟re not alone.” A Beautiful Mind A film about the life of John Nash, voice hearer starring Russell Crowe. Albert 22 3 Beliefs about voices. See Me Scotland Everybody has different beliefs about what their voices are and where they come from. Some believe that they are a symptom of their mental ill health, some believe that they are the voices of spirits/gods; some believe they are caused by a trauma in their life. Whatever the belief, accepting your voices is the first step in coping with them, though this can also be the most difficult step to take. We make no claims about what voices are or are not. Everybody is respectful of each other‟s beliefs. It is more important to accept the voices are real to you. “ In the group we share experiences on how to cope with voices, one member of our group shared with us how his voices were really abusive and negative in public places so he used breathing techniques and meditation that he had learnt in Yoga and Karate to cope. He felt by practising these techniques when he felt well that it equipped him to be better trained to use them when his voices became bad.” www.seemescotland.org.uk See Me is Scotland‟s national campaign to end the stigma and discrimination of mental ill- health. Can also be found on Facebook and Twitter. Scottish Recovery Network www.scottishrecovery.net “Recovery is being able to live a meaningful and satisfying life, as defined by each person, in the presence or absence of symptoms. It is about having control over and input into your own life. Each individual‟s recovery, like his or her experience of the mental health problems or illness, is a unique and deeply personal process.” Read more on recovery at the site. Voice Collective www.voicecollective.co.uk Voice Collective is a 2 year project set up to develop, and co-run, peer support groups for young people (aged 12-18) who hear, see or sense things that other people don't. It is based in London but whether you live in that area or not the website has a lot of great information. Ron Coleman www.roncolemanvoices.co.uk Ron Coleman has used his experiences in his own recovery of mental illness to develop ideas for treatment for others. Since then he has went on to write numerous books and papers on the subject and was influential in the development of the Hearing Voices Network in the UK. Rufus May www.rufusmay.com Dave Group Facilitator 4 Rufus May is a Clinical Psychologist best known for using his own experiences of being a psychiatric patient to promote alternative recovery for those experiencing mental health problems and negative voices. His website contains useful coping strategies and the 21 interesting film he was involved in “The Doctor Who Hears Voices”. Useful Web Sites Scottish Association for Mental Health (SAMH) www.samh.org.uk The Hive is run by SAMH it is Scotland‟s leading Mental Health Charity. SAMH is the Scottish Association for Mental Health, a charity working across Scotland, founded in 1923. Every year, we provide over one million hours of support to people who need our help. Every day, we campaign for better mental health for the people of Scotland Hearing Voices Network (Scotland) www.hearingvoicesnetwork.com Info: The Network aims to erase the stigma of voice hearing, and to enable voice hearers to realise their place in a society which knows and understands their plight, and to be at the forefront in achieving innovative user-led approaches to recovery. Intervoice- The International Community for Hearing Voices www.intervoiceonline.org Intervoice is the International Network for Training, Education and Research into Hearing Voices. The website has lots of useful info practical advice on dealing with negative voices to an online shop with books and DVD's about voices. Can also be found on Facebook. Mental Health Forum www.mentalhealthforum.net Has a Hearing Voices forum run in association with Intervoice. A great place to share experiences with fellow voice hearers. DHVS- Independent Hearing Voices Website www.dhvs.freeuk.com The Hearing Voices Website is an independent website which has no formal relationship to any National Health Service Trusts, local government or any other organisation whatsoever. It does have some great information for Carer‟s and family members as well as a forum where you can discuss your experiences. 20 “ Nobody expects you to say anything you‟re not comfortable with, in fact it was a great relief to finally say out loud „I hear voices‟ There is something very powerful about talking with other voice hearers and listening to their stories. If you don‟t feel like talking there is no pressure, just spending time in a room full of people who can relate to your experience is enough in itself. The group enabled me to share my fears without judgement or ridicule. “ Chloe Voice Hearer It is also important not to be afraid to talk about your voices. This is not easy and sometimes it is hard for family or friends to understand. Which is why coming to a hearing voices group can be a great first step to accepting and coping with your voices. People learn to cope with their voices not because the content of the voices change but because the nature of their relationship with the voices changes. If you believe that the voices are in control of you, you'll have problems coping. If you believe that you are stronger than the voices you'll cope much better. This can be hard to accept but by talking about your voices in a support group it can become easier. 5 The Hive runs two Voices groups to serve the needs of patients of the Hospital The Hive Hearing Voices Support Group 2-3pm at the relaxation room within the centre every Wednesday. The group is a relaxed, safe place where people can get together and share their experiences of hearing voices. It is open to both in-patients of the royal Edinburgh Hospital and to people from the community. It is not a therapy group. It is a place where they help each other by sharing stories and ways to cope. It is run by Dave Boyd and Julie McPherson, Activity Workers at The Hive. “ One of the suggestions we have made in the group on how to cope with your voices when out in a public place is to use your mobile phone to talk back to them. We had been suggesting this for people to try this for years without mishap. Then one our group members told a cautionary tale. He had been finding this useful for dealing with his voices while on the bus. Unfortunately one day while doing this his phone rang, while he was supposedly already using it. Ooops. He saw the funny side as did the rest of the support group. So now our advice is to talk back to your voices on your mobile just make sure you put it onto silent first” Julie Group Facilitator In the group the Voice hearers are the experts and we respect everyone's beliefs on what or who their voices are and the causes of them. The group is also a great place to get to know people and make new friends. With fun events and trips planned throughout the year, it is important to remember you are not alone. The Orchard Hearing Voices Group This group is held in the Orchard Clinic. It is run by Dave Boyd from The Hive and Bill Gilroy, a nurse therapist from the clinic. 6 Dave Boyd and Julie McPherson, Facilitators of The Hive‟s Hearing Voices Support Group 19 Things that can help when the voices are bad Listening to music –it works better with headphones Talking back to your voices – saying NO! Negotiating with the voices asking for a timeout Playing a game – on your mobile – solitaire, snakes Read a book – funny or intense doesn‟t matter Watch films / TV Singing / chanting Praying / speaking to God Phone a friend – talking Dave, Julie and Albert at The Hive Hearing Voices Group Taking a relaxing bath Focus on breathing / use relaxation technique These are the groups rules that we have agreed Put lights on / radio (at night ) within our support group. Cleaning/ tidying / Cooking Puzzles – crosswords, Sudoko Exercise Gardening Treat people with respect at all times Do not talk over other people and allow Painting / Drawing everybody to have their say Computer games Reading out loud Sewing / knitting / any crafty thing that is fiddly Visual imagery / Count to yourself when trying to sleep Go for a walk Respect other people’s beliefs Everything said in the group is confidential Mobile phones off /silent The group is informal so group members Yoga Shouting back at the voices – into the pillow / telephone can come in and out at anytime 18 7 Annual Hearing Voices Open Day Every year we hold an Hearing Voices Open day at the Hive. The day brings voice hearers from all over Scotland together so they can share experiences. It also reduces stigma by educating carers, students and professionals by listening to the experts, the voice hearers themselves. It is a great place to share information about hearing voices groups and resources within communities across Scotland. Our speakers this year were Bill Gilroy who facilitates the Orchard Hearing Voices Group with Dave. He talked about how they set up the voices group and mindfulness techniques they used in the group. Andrew Watson, a psychiatrist from the Orchard Clinic who discussed the latest medical research on voices, positive and negative. He showed us some amazing slides of brain scans, showing the differences in brain activity when people heard voices. Stuart Hyde, finished off by telling us his experiences of hearing voices and setting up a hearing voices support group . The barbeque afterwards was great fun especially as we actually got a hot and sunny day. This gave everyone a great chance to have a chat and share experiences. 8 Examples: Breathing in through the nose and out through the mouth while counting to ten Sitting / Lying comfortably and concentrating on breathing out the bad feelings we have and breathing in good feelings. Sitting and tensing all our muscles at once, starting at out feet moving up our legs to our body and finally screwing up our face holding it for 5 secs and then relaxing everything. Repeat up to ten times. Visualising putting all your bad feelings and stress into a box and concentrate on shrinking the box smaller and smaller. Concentrate on your breathing, counting each breathe in and out, counting up to 100 and then counting back to zero Imagine your voices like a radio in the corner of the room, and imagine slowly turning the volume down. “ Sometimes we ask the Hive‟s Tai Chi instructor, Andreas to come to the group to show people different breathing exercises. Everyone always really enjoys these sessions“ Dave 17 Group Facilitator Meditation and Mindfulness Some people who hear voices find that practising some meditation or mindfulness techniques can help to reduce the frequency or severity of the voices. Meditation and mindfulness can help reduce stress levels. Mindfullness can also show how to notice and work with the experience rather than engaging in a futile struggle to fight or run away from it. “ One of the reasons the support group works is it‟s not about Dave or I telling people how to cope with voices, it‟s about people supporting each other sharing stories and experiences. Mostly we just supply the coffee and biscuits and listen as they help each other and grow stronger from the experience.” Julie Group Facilitator Mindfulness is bringing one‟s complete attention to the present experience on a moment-to-moment basis. It is paying attention to breathing, body sensations, thoughts and feelings in a kind, accepting non-judgmental way. It can be as simple as stopping what you are doing and concentrating on the way your body feels at a particular moment. Is your heart racing? Is body tense? Are you feeling hot or cold? And being accepting of these sensations. Meditation and breathing techniques can be used at any time to reduce stress levels. Dave, Julie and Albert in a lively group discussion. 16 9 History of Hearing Voices Groups and Network In 1987, Marius Romme, a social psychiatrist and Patsy Hage, a voice hearer, went on Dutch television to speak about voices and to ask people who heard voices to contact them. 750 people responded 450 heard voices 300 could not cope 150 were able to handle the voices “One of our group identified that her voices would be really bad when she was shopping in the supermarket. With the group she came up with some coping strategies to help: not to go when the shop was really busy, making a list beforehand, at the checkout just put things back into the trolley then taking them to a quiet corner to pack them into bags at her own pace. She found that these helped lessen her voices when she shopped” Julie Group Facilitator Living Well Marius Romme The response from this program led to Marius, professionals and voice hearers seeing the need to set up the first self-help Hearing Voices group in Holland. Groups then spread right across the world. In the UK, this first conference was held in 1990, in Manchester, thirteen people attended. This was only the start there are now more than 90 voices groups regularly 10 meeting across the country. The way we live our lives can effect peoples voices as well. Eating well, sleeping well, getting plenty of exercise as well as looking after ourselves can all help to lessen the voices. And obviously not sleeping, eating junk food, too much caffeine, alcohol, drugs, isolation and not looking after oneself can increase the severity of peoples voices. In the group, we provide practical information on healthy eating and affordable ways to exercise. 15 Coping strategies There are various strategies and techniques to help dealing with your voices. Some strategies can help give immediate relief, which we call distraction techniques and others are more long term ideas that will take practice and may not produce immediate results but will help long term. Accept the voices as part of your reality Talk to someone about your voices or attend a voices group Keep a voice diary – when are the voices bad, take note of anything that may affect your voices: sleep pattern, what you‟ve eaten, and stressful situations that day. Identify triggers and patterns Replying to the voices – use a mobile if out in public place but remember to switch off or put on silent. Identifying the voices – who are they? What do they say? Accepting that you are in charge of your actions not the voices. Negotiating with them – setting times when you will give the voices your full attention and times when the voices must give you peace Check if what the voices are saying is true and challenge them Choose only to listen to the good things they say Across the world, groups of voice hearers now meet and talk, sharing view points and strategies to support each other, telling their stories and exploring ways to work with, rather than against their voices in order to reclaim control and rebuild their lives. Together these groups make up the Hearing Voices Network. The network works towards promoting recovery, acceptance and education. The position of the hearing voices movement can be summarised as follows: Hearing voices is not in itself a sign of mental illness. Hearing voices is experienced by many people who do not have symptoms that would lead to diagnosis of mental illness. Hearing voices is often related to problems in life history. If hearing voices causes distress, the person who hears the voices can learn strategies to cope with the experience. This is often achieved by confronting the past problems that lie behind the experience. “ I like the laid back atmosphere of the voices group, it helps you open up.” 14 Stephen 11 John Frusciante Well known voice hearers People throughout history have heard voices which they have described as gods, muses or voices. In many ancient cultures this was not seen as unusual occurrence and was seen as a religious or spiritual experience until recently. They viewed voices as a positive experience which could inspire great creativity. Here are a few well known people who also hear voices, more can be found at http://www.intervoiceonline.org/ about-voices/famous-people Philip K Dick Philip K Dick was an American novelist, short story writer and essayist whose published work is almost entirely in the science fiction genre. He often drew upon his own life experiences in addressing the nature of paranoia and schizophrenia in novels. Several stories have been adapted into popular films since his death, including Blade Runner, Total Recall, Minority Report and The Adjustment Bureau. “It hasn‟t spoken a word to me since I wrote The Divine Invasion. The voice is identified as Ruah, which is the Old Testament word for the Spirit of God. It guided me for a while. It has spoken to me sporadically since I was in high school. I expect that if a crisis arises it will say something again. “ Source: Rod Serling’s The Twilight Zone Magazine, Vol. 2, No. 3, June 1982 12 American guitarist, best known for playing in the Red Hot Chili Peppers, selling millions of records and has released 10 solo albums “I had just so many mental problems. It wasn‟t until I was 28 that my brain actually felt like a spacious place. When I was 18, 19, 22, my brain was just clogged all the time – non-stop voices. I couldn‟t figure out what was going on. There was a lot of confusion inside me, this flood of voices, often contradicting each other, often telling me stuff that would happen in the future, and then it would happen, voices insulting me, telling me what to do” Source Independent June 2004 John Nash The Nobel Prize winning mathematician has heard voices most of his life. His life was documented in the film ‘A Beautiful Mind’ “I thought of the voices as... something a little different from aliens. I thought of them more like angels... It's really my subconscious talking, it was really that... I know that now.” Source 60 Minutes : CBS News February 2009 13