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Voices Self-Management Conference at Manchester 2000/10/05
RON COLEMAN on RECOVERY - AN ALIEN CONCEPT?
Extracts from a talk given at the Manchester Self-Management Conference, organised by National Voices Forum with Hearing Voices Network in Oct 2000.
This write-up is from notes, and cannot give full justice to Ron's talk.
Manchester is a place I come to often. I used to be on the executive of Manchester Hearing Voices Group, and then set off on my own. So it is in Manchester that I let you know, that, having given thought to the future, I have decided to give up public speaking as from next September - due to problems with physical health. Good things have happened as well, though. I now have a19 month old son, Rory, who's a bit of a hooligan - showing there are genetic links after all!
In the last couple of years, the Government has been pushing out loads of papers: first the Green Paper on the National Service Framework, then Jack Straw's statement on psychopathy - they want to lock people up before they commit a crime. It's the Government's idea of making the community safe. That's British justice for you! Finally the Green Paper on the Review of the Mental Health Act. No doubt it will be passed, and CTOs (Community Treatment Orders) will become a reality.
Hundreds of assertive outreach teams are being set up, often replacing Community Mental Health Teams. The Government is committed to maintaining people in a sick role. There is only one passing mention of "recovery" in the National Service Framework. But there are several references to "risk" and "dangerousness". This is despite it being meant to be a "health" document!
The Government is implying that people don't recover. They don't expect us to recover. If you're a carer, they don't expect the person you care for to recover. In Birmingham, bereavement counselling is given to carers of newly diagnosed relatives suffering from schizophrenia. What message is that? One of despair - it will ensure a high suicide rate.
I believe in recovery - that people can reclaim their lives. It's all our responsibilities to make that happen. For years, we've been conned with words like "empowerment". I used to get empowered every Tuesday morning. They called it ECT!! "Empowerment" seems to mean you can choose from a prescribed list. Or it means a token user or carer on a committee of professionals.
People are truly empowered when they take power for themselves. Why should we give up our madness when they offer us nothing in return? When we come out of the system, the only power we often have left is the power to be mad. Is it any wonder some choose to exercise it?
If people are oppressed, for example through CTOs, people will fight back. Eventually people can't take any more. I was one of the lucky ones - I got out and did something different. I'm sometimes told that I'm "not a normal schizophrenic"! What's "a normal schizophrenic"?? They say I never really had schizophrenia. No - I just wanted a 10 year stay in the psychiatric system!
Psychosis is not a life sentence. Hearing things is not a life sentence. Fearing things is not a life sentence. These experiences may change the way you view the world, but they can be a starting point. Everyone's on a journey of recovery.
Tony Blair is trying to maintain me as a victim needing to be cared for. But I want to be cared about, not cared for. With the resources and space, I can care for myself. What's wrong with the dream that everyone can eventually leave hospital? What's wrong with the idea that people who work in mental health do so because they want to see people recover?
I'd rather spend a month in a psychiatric unit than a night in Piccadilly, Manchester when the pubs come out. I'd feel safer in the unit! I like being "mad" - not ill, not stupid. They said that Galileo was mad when they he said the earth went round the sun!
I once went into a "sweat lodge" - within 20 minutes I was seeing things. People got so relaxed in the lodge, they started to get in touch with themselves. Hearing voices is encouraged and expected within some cultures. In Aboriginal culture, if someone goes mad, they bring the whole tribe together and ask: "What have we done to this person to make them go mad?" But here we call a "ward round" and talk about how the person's behaviour is affecting others. We don't talk about what has happened in the person's life.
We call it "community care" - but the community doesn't give a s.. t! What do politicians and health authorities do to combat discrimination and stigma? Pretend it's not happening!! They don't tackle the roots of discrimination and stigma because they don't know how to.
Look at history: who got women the vote? Women. Who got better rights for black people? Black people. We must be proud of who we are. We should be proud of our experiences, because they give us insights.
Our society treats behaviours and symptoms, not causes - first aid - sticking plaster psychiatry! A psychiatry that has failed. It's not all bad - there are some good services and people. If one person in a voices group leaves to get on with their life, that justifies that group. But self-help groups often have to struggle to get enough funding. Is this because they take power away from the Establishment?
It's time for partnerships between users & survivors in running services. My colleagues and I are planning to open the first psychosis unit in April owned and run by users. I have a dream that all patients will be able to get out of their beds and live in the community. Instead of assertive outreach, how about assertive recovery? We don't need another drop-in service, but the resources to lead a meaningful life.
Need assessments should not just be based on a choice from a limited list of what's on offer. We need services that meet individual needs - not services that keep people ill. Recovery is about enabling people to answer the question, "What is your dream about the future?"
I used to go into hospital every Christmas, because my partner Annabelle had died at that time of year. When I went into the system at 33, it was like I was 20. I finally feel I'm 42 now. It's harder being responsible - harder being well than ill. When I took part in a hospital quiz, I had seven other voices to confer with! The voices are mine - I own them. That allows me to own my recovery.
I've enjoyed my recovery - it's like a breath of fresh air every day. Please enjoy yours!
Coping with Voice-hearing - Sharon DeValda reports
Some voice-hearers need coping methods to keep them out of hospital. Carers need knowledge too. We need information and education. How do we make sense of what is happening to us when we hear voices? Often we think we are going mad. Our first reaction is often fear.
Religion may be the culprit: it affects so many vulnerable people. (Sometimes the occult and spirits may be involved). We need to ask what keeps us well. What techniques are required in the early stages? How do we cope with religious conflict and pressures?
We discussed the most important coping methods:
1. Phoning a friend/relative, but particularly helpful is phoning another voice-hearer. It has to be someone who knows us, but if this is not possible, there are a number of useful help-lines, eg Hearing Voices Network, NSF Advice Service, Saneline and National MIND. This is usually helpful, but may, of course, be difficult for the listener.
2. Distraction techniques.
3. Focusing on the content of the voices, and allowing, say, half-an-hour a day to listen to them.
4. Medication/sedatives, (only in doses prescribed by a doctor). Abuse of medication can be very harmful. Some people find that medication helps, but others are not keen on it. Everyone varies.
5. Communication with friends or close relatives, or someone who understands what you are suffering from.
6. Keep appointments with professionals if possible. They are there to help.
7. Try to avoid stressful situations which increase voice-hearing, such as noisy, crowded pubs, clubs and cafés. Go to places where you feel comfortable and not threatened. You might prefer quieter spots.
8. Alcohol might suit some voice-hearers but not all. It might be safe in reduced amounts, but has been known to aggravate voices.
9. Smoking can increase stress, as with other stimulants. Try to cut down or give up.
10. Read and complete the workbook, "Coping with Voices", by Ron Coleman, and other material on coping strategies.
11. Adjustment to change, trauma, loss, fear and bereavement.
12. Consider what might be causing voices, eg racism, abuse, bullying, difficult relationships, etc. Try to discuss the issues within a safe environment with someone you trust.
13. Challenge voices - discover their meaning.
14. Out of hours help, eg support network/helpline.
15. Help for women, abuse victims or victims of domestic violence. Safe houses.
16. Learn the differences between good or bad voices.
Our group realised how hearing voices can lower self-esteem. We thought that one of the best ways to cope is doing things for ourselves. This might be art, music, expression, poems, creative arts. We need positive feedback. We should try to manage as much/little as we can. You need to reward yourself. Talking is an ideal therapy.
In extreme cases of hearing bad voices we need help or they can lead to problems such as self-harm or self-abuse, eg eating disorders.
Finally the group briefly discussed alternatives to conventional treatments. The main ones mentioned were aromatherapy, essential oils, calming homoeopathy remedies, herbal teas.
Cognitive Therapy was discussed briefly. This is an interesting approach, but not everyone will benefit. The therapy studies triggers for voice-hearing, personal meanings, linking with the past, changing thought processes, etc.
We could have debated for much longer, but we all gained much insight, understanding and positive feedback. We enjoyed the conference and would like to thank the organisers.
Notes from Keith Hall on workshop 1 discussing Non-medical Coping Strategies (co-facilitated by Jim Felix)
12 others present: Terry, Martin, Sue, John, Matthew, Patricia, Eric, Liz, Nicole, Andy, Tommy & Sheila.
Each person gave an outline of their diagnosis or experience. Everyone thought that medication works but that high doses can have a detrimental effect. Side effects were discussed and styles of prescribing.
Keeping a diary is useful.
Each individual drug has a set of therapies associated with it. Just as important as drugs are social learning and social support.
Some clients have premonitions and feel they can see into the future.
Jim gave a few words about his own experience.
The effects of marijuana and similar drugs was discussed.
The use of music alongside voices in the head was discussed and the experience of dreams was related.
Delusions were discussed.
Amy Ford reports on workshop 2 on Non-medical Coping Strategies
One important idea that came up was to do as many activities as possible that were pleasurable and made you feel good. One person described it as "100 different ways of taking it easy". It helps to have individual coping strategies: Some found peace and quiet helpful, while others thought that being busy was better for them. Also emphasised was the importance of meeting other people and talking about your experiences. It was said that it's necessary for people's children to be allowed to visit them in hospital, so long as they are well-behaved. Love was cited as one of the most valuable experiences in life - as Ron said in his presentation, "we do not want to be cared for, but cared about".
The acutely ill/distressed state
Several people said it mattered how other people reacted to you when you were acutely ill or distressed. If you are feeling paranoid but are shown proper care, it can actually relieve your psychosis, and the people who treat you well are less often the subject of frightening delusions. It was acknowledged that medication can sometimes make you worse. For those that hear voices, some thought that distraction was best, while other theories involve entering into a relationship with your voices. It was also pointed out that voice-hearing, for example, was more accepted in some third world countries than here. One person said that schizophrenia could be described as a more sensitive state of consciousness - sometimes a quality rather than a deficiency.
Work and hobbies
All types of hobby were thought to be helpful, especially the arts: theatre, reading, music, painting, etc. One person said it was therapeutic to "blow your mind out with loud music!" Computer games were also mentioned, and, by way of contrast, horse riding. On the work front, flexible conditions were important and non-profit-making co-operatives were praised along with the LETS task bartering scheme. And self-help and working in the user movement were stated as being very beneficial!
This was seen as supportive for many, but it was also claimed to be 'dangerous' as it can bring up many feelings. Church and organised religion were generally seen as helpful - one person said being told at Sunday School that suicide was a sin had stopped her doing it. Clairvoyance was thought to be potentially frightening and possibly not constructive.
Massage, aromatherapy, yoga and soaking in salt water were all recommended. One person recounted that acupuncture had totally "deflated" and relaxed them 100%". Relaxation classes in hospital were thought to be inadequate, but agreed as providing a starting point. It was important to be able to laugh and cry to let feelings out. Chocolates, ice cream and other sweet foods helped many people get by. Finally, counselling and family support were regarded as very useful.
Good public transport is essential as so few long-term service-users drive. The stigma of getting a diagnosis of schizophrenia can be damaging, and subsequently you have to fight to be YOU. It was inspiring to read books by people who have been through mental illness, and made a good recovery. Public education about mental health starting at school-age was advocated, and people in general needed to be more tolerant.
Notes from Edwin Martin on the Depression/Aftermath of ECT workshop
The facilitator, Isobel, Edwin and four other participants.
One participant had received ECT, while another had experienced depression without receiving ECT.
Isobel showed the video "Shock Tactics", which she had been involved in making, and some pictures, posters and aromatherapy oils.
Patients can experience euphoria after the brain effects that ECT causes, and is of short term benefit for depression.
One participant was a trainee psychologist who had been asked to observe the application of ECT. After seeing 5 patients undergo the treatment she couldn't bear to see any more.
In Liverpool, older people are being given ECT in considerable numbers.
Isobel forwarded the following acronym:
S.P.I.C.E. S Social Interaction
P Physical wellbeing
I Intellectual stimulation
E Emotional understanding
Hence "Spice up Your Life!"
Isobel talked about aromatherapy oils and their benefit to mental well-being. Sense of smell is important and is linked to memory in the brain. She showed how to use the oils. One way was to put drops into warm water in a special container and use a floating lighted candle. Everyone could smell the pleasant aroma. "Colpeppers" are a good herbal organisation to get herbal oils from. Health shops also sell oils - shop around for the best price.
Notes from Keith Bishop on Negative Symptoms workshop
Co-facilitated by Sophie Jones. 9 others present.
Why do negative symptoms occur? Lack of attention suggested, and not discussing mental health needs. They can start with depression and isolation. If your mind is capable of experiencing positive symptoms, then you can experience the opposite, for example, as highs and lows.
It was universally thought that disruptions in relationships with professionals through staff changes had a negative effect. When it became a matter of them simply reading the 'notes' and asking how one's feeling, it made you think, "Why bother?" Indeed the majority present stated they'd received more help from voluntary agencies.
Some members had chosen alternative treatments, eg acupuncture, aromatherapy, relaxation therapies. This was thought acceptable as long as it's done in consultation with one's GP, CPN or other professional, although there was a 50/50 split on the subject. It was agreed, though, that alternative therapies were a matter for individual choice. Other common symptoms discussed were lethargy, memory loss and pacing.
FEEDBACK ON CONFERENCE
29 evaluation forms received (Not everyone answered every question)
1. What were the best parts of the day?
(Some mentioned more than one of the following)
Ron Coleman x 15 mentions; Speakers x 3; Workshop(s) x 7; ECT workshop; Food; Lunch; Buffet; Coffee; Food excellently organised & presented. Question & Answer session x 2; Feedback; Poetry reading; Everything was informative; Everything; It was all good; The bloke with green hair.
2. What were the worst parts of the day?
None x 9; Negative symptoms workshop; Feedback - time too short. Lack of time; Organisation re. timings; Coffee; Lunch;
Lunchtime when I was waiting for the start but did not know people and felt too shy to speak to others.
Non-attendance of Mr Smith; Non attendance of 2nd speaker on "Managing Psychosis". Smoking outside;
General organisation/time-keeping/communication about arrangements.
Criticism of all mental health professionals by a few people.
A conversation about the Bible. Rain.
3. a) How would you rate the speaker's usefulness to you?
(Scale from 1 low to 5 high)
3 chosen by 5 people, 4x10 people, 5x9 people; Average: 4.2
b) Who was useful to you and why?
(This question was designed for more than one speaker)
Informative; Positive images; Ron Coleman & Isobel (ECT workshop leader)
RC - clear, concise and passionate; Inspirational, motivating, moving, educational & extremely entertaining; Ron; RC - interesting. RC - inspiring. RC - A different perspective. RC - Right attitude. RC - idea that a recovery is possible. RC's speech on empowering yourself.
Ron - Had forgotten how good a "Peter Campbell" figure he is.
RC's talk was very inspiring, positive and passionate - it's given me a spark of motivation to recover from my problems and get on with my life. Giving hope for the future of survivors, hence their carers. Relevant ("Mad Pride") Literature.
What happened to Mike Smith? - no information given. Everyone.
4. a) Which workshop did you attend? How would you rate this workshop's usefulness to you? (Scale from 1 low to 5 high)
Negative symptoms: 2, 3 (Ave: 2.5)
Positive symptoms: 2, 4, 5 (Ave: 3.7)
Non-medical methods: 3x4, 4x6, 5x2 (Ave: 3.8)
Voice Hearing: 3x2, 4, 5 (Ave: 3.0)
Aftermath of ECT: 5 None attended (1 person)
Overall workshop average: 3.7
b) What was useful to you (about the workshop) and why?
Information; New Ideas; Members descriptions of experiences - insightful.
Interesting to hear experiences of recovering patients and some professional reactions. Hearing about different medications & experiences/thoughts.
Positive aspects of working through or beyond psychosis led to a feeling of renewed strength. Techniques discussed I could pass on.
Gave good spiritual communication with a group of peers who'd experienced hospitalisation. Sharing ideas of how to cope using non-medical methods.
ECT workshop leader was sensitive, passionate & well-informed.
Nice to hear personal experiences and coping methods with a bit of hope.
Hearing others' experiences of schizophrenia - useful as I am a carer.
Different coping strategies which can be used to distract from hearing voices + tackling self-esteem + dealing with past baggage. Discussion on negative symptoms. Brilliant for consensus. No introduction to the workshop - random mixture of people - haphazard. The various experiences of other people's voices and their ways of coping, and related thoughts. The workshop gave me some useful advice and renewed hope.
5. How would you describe your personal satisfaction with the day?
(Scale from 1 high to 5 high) 3x6 4x12 5x5 Ave: 4.0
6. How could future conferences be improved?
By having more of them; More (good) speakers x 2; More of the same!; NSF literature; At least 2 speakers; Better food; Sticking to times; More time x 3. More time so can attend more than one group. The workshops should have been shorter to give more time for feedback and discussion. More time for the workshop session and less time for lunch and coffee breaks - All day conference starting in the morning, although this may be impractical for those travelling.
Get Mike Smith to turn up & more frequent conferences; Getting Mike Smith to talk - I was really looking forward to hearing him. Nothing could be improved.
By getting beyond being on the defensive (as individuals) - by forming a network of inter-related groups. More information about alternative therapies.
Tighter control of lunchtime - more networking among peers. Better organisation. More structure to workshops - clarify goals/aims of sessions.
7. Please tell us where you found out about this conference
Leaflet (from where?): 1 + 1 via Zion group + 1 NSF + local self help group
"Your Voice" magazine: 4; NSF Project: 6; Nat Voices Forum: 2; Friend/family: 4
Hearing Voices Netwk: 6 (incl leaflets sent in mailing); "Leaflet through mail": 1;
Mental Health Professional: 2 (These responses were hard to categorise).
8. Any other comments?
I found the talks and workshops very interesting and helpful and would definitely come again - am inspired to recover. I read critical theory for empowerment.
I found it stimulating and pleasant - however, there was little fellowship over lunch, and slight patronisation from more middle class professional delegates.
It was well-organised and very inspirational and informative, but would like a whole day or 2 day event; I was a bit disappointed that Mike Smith was unable to attend to give his talk. The NSF and its work was not even mentioned.
Doing a good job. Well done. Very supportive, really good. Thank you.
RC saved day for me - not what I'd expected having spent money on travel.
National Voices Forum & HVN Conference, Manchester, Oct 2000