Reducing Distress in Psychosis – a professional development breakfast meeting held by the WA Branch of the Aust. College of Mental Health Nurses

On Wednesday the WA Branch of the College, of which I am the Education Coordinator, organised a breakfast meeting which was a powerful example of what is possible in bringing together different approaches and understandings of mental illness and distressing experience. Hospira generously sponsored the breakfast which was attended by 40 or so mental health nurses.

The time began with the Chair, Breda Ryan, giving an overview of the status of the new Mental Health Act. Following this we heard from Mirella Tarulli, the clozapine rep, and then Diane Sherwood who shared some of her observations of potential risk areas of clozapine therapy and how to manage these responsibly. Constipation was an area particularly highlighted with Di suggesting that all patients on clozapine should be written up for aperients as it is easier for people to decline one than to raise what is, for many, an embarrassing issue. She also made a case for more widespread use of this med but at lower doses so as to not interfere with people’s participation in life to such a marked extent as is often observed to be the case.

I then gave an overview of psychosocial approaches to psychosis, explaining how these have been evidenced for decades now and are utilised effectively by thousands of professionals and consumers the world over. Rather than being seen as an alternative to biopsychiatry, they can be undertaken in conjunction, with an emphasis on collaborative models of care. In question time one of the nurses present made the observation that this approach ties in nicely with the new MHA which she sees as having a strong focus on holistic approaches to mental wellbeing.

Organisations like ISPS, the International Society for Psychological and Social Approaches to Psychosis, and Intervoice, the International Network for Training, Education and Research into Hearing Voices, were given as examples of the work that is being done across the world to progress the understanding and effective management of psychotic experience, with the emphasis being on supporting the person themselves to develop ways of coping with and, potentially, even making sense of their experience.

References for this piece of the morning’s presentation are:
Aslan, M. & Smith, M. (2009) Understanding & Making Sense of Voices. A toolkit for voice hearers, their families, friends and workers. Coventry: Crazy Diamond.
Coleman, R. & Smith, M. (2005) Working with Voices II: Victim to Victor. Dundee: P&P Press Ltd.
Geekie, J., & Read, J. (2009) Making sense of madness: Contesting the meaning of schizophrenia. East Sussex, UK: Routledge.
Podvoll, E. (2003) Recovering Sanity: A Compassionate Approach to Understanding and Treating Psychosis. Boston: Shambhala.
Romme, M. & Escher, S. (1993) Accepting Voices. London: Mind Publications.
Romme, M. & Escher, S. (2004) Making Sense of Voices. A guide for mental health professionals working with voice-hearers. London: Mind Publications.
Watkins, J. (2008) Hearing Voices: A Common Human Experience. Melbourne: Michelle Anderson Publishing.
Watkins, J. (2013) Unshrinking Psychosis : Understanding and Healing the Wounded Soul. Melbourne: Michelle Anderson Publishing.
Websites
INTERVOICE: The international community for hearing voices www.intervoiceonline.org/
ISPS:  International Society for Psychological & Social Approaches to Psychosis  www.isps.org On this page http://www.isps.org/index.php/local-groups/regional-isps-groups/australia/index.php you can sign up to the email discussion list + there’s some very useful links.
HVNA: http://hvna.net.au/
Sarah K. Reece: http://sarahkreece.com/2015/07/02/psychosis-voice-hearing-links/

We then moved into a more dialogic frame, where Theresa Hewlett, a therapeutic psychologist in private practice in Perth, and I had a conversation out the front. This gave people an opportunity to hear more about the work from a practitioner’s perspective, including some case examples. Our conversation was based on guiding questions I had prepared in advance and a summary of both these and Theresa’s responses is below:

1. Coming from your background of training as a therapeutic Psychologist, were you concerned about working with psychosis?
• What made you think you could?
• What attracted you to the work?

Like me, Theresa was taught in university that people experiencing psychosis and symptoms of schizophrenia were not likely to benefit from therapeutic approaches. She wasn’t a Psychologist when she first started this work, she was “a naïve university graduate”. She identified a great deal of her concern in approaching this work as being related to her own fear of the labels. Once she met the people much of this fear subsided.

Theresa gained a different understanding about psychosis through developing resources for the Hearing Voices Network in W.A. and, although she didn’t think she actually could the work, she just got on with doing it and focused on treating the person like she would anyone else. The most useful advice she was given was “Just be you, and you’ll be fine”.
Theresa reports finding working with people with psychosis to be “intrinsically interesting and challenging” and feeling “honoured when people share such private experiences”.

2. Could you share with us an example of someone you’ve worked with who wasn’t experiencing improvement with medication but who responded well to this approach?

Theresa shared some of her work with a person who was taking meds but was still experiencing distressing voices and who she met back in 2012 shortly after a long hospital admission. In their work together the person learnt to better cope with their distressing voices, which in turn became “less prominent and more positive”. This was seen as happening parallel to improvements in the person’s confidence and self-efficacy, all of which worked together to reduce their need for as higher doses of medication.

Together they worked directly with managing the experience of voices and also on managing other facets of life such as processing grief & anxiety, navigating relationship dynamics, and achieving life goals in the work and relational realms. The success of this work is evidenced through the reduction in distress the person reports, their reduced need for meds, their successful achievement of goals such as owning their own home, working full time, and creating and sustaining a loving partner relationship. Theresa still sees this person every 4-6 weeks as a form of maintenance and states that “medication alone would not have been sufficient to reduce the impact of voices, and to help this person create the life they want”.

3. Were they an isolated case or have you had many experiences like this?

Different people have benefited to varying extents. At the more subtle end of the spectrum is one person who heard voices and also experienced highly disorganised/ derailed thoughts. This person is still on their original types and doses of medication, which is found to be beneficial, but with therapy they have over time reached a space where they can tell their narrative in an ordered way. Although this may not seem like much of an improvement, Theresa identifies this capacity to have enhanced the person’s connections with others. Prior to therapy others would struggle to make sense of this person’s utterances and as a consequence the person was quite isolated.

Ros observed that this ties in with work done by Georgie Paulik, a clinical psychologist in Perth, who has developed the ideas of the ‘Working with Voices’ approach pioneered by Prof. Marius Romme in the Netherlands in the 1980’s. Romme and others have continued this work which has inspired many research and clinical pilots internationally. Georgie developed a structured 12 week program out of this work, known as Cognitive Behaviour Relating Therapy, which focuses on the importance of people developing and mastering their relationships with their voices and the parallel improvements in relationships that subsequently happens in their external lives.

Theresa did mention some clients she has worked with who are not on any medication and shared her thought that this freed up more cognitive capacity that in turn and with support enabled them to “gradually process some very disturbing childhood traumas”. Over time she reported that they were also able to gain an understanding of their psychotic experiences. As Theresa says “the experience of some voice hearers is sometimes better understood as a flashback – a reliving of a traumatic experience – and understanding this seems to help them process it”.

She then cited research which indicates this flashback experience is likely to be the case “when voices start before 18 years of age, when there are both negative and positive voices and when there are multiple modalities (auditory, tactile, olfactory, visual)”. Her standpoint and that of other practitioners who work from this perspective is that in these cases the brain is “attempting to process the unfathomable memory”. Given this, talk of disease is considered to be very harmful as it can obstruct the person from getting the help they really need – trauma informed psychotherapy.

• Can you speak at all to what, in your experience, makes the difference as to whether someone engages in this approach or not?
• What supports their engagement?

“Engagement is supported when a person feels safe and they are accepted as they are.
Engagement is supported when there is ongoing funding”; Theresa went on to explain how 10 sessions for ongoing psychosocial work with psychosis with or without developmental trauma is woefully inadequate. Her preferred model is ‘pulses’ of therapy. She warned practitioners to not engage in deep trauma work if they are unable to engage for a prolonged period of time given that relationship is key and needs to be sustained over time. People require assistance not only to support them in increasing their capacity to cope with their distressing experiences but also with life generally.

Theresa sees engagement as being “supported within a holistic approach that allows for the person and their social networks including professionals to also be supported”. She spoke to her personal overwhelm of not having others to support her in her support of someone who is having a psychotic break. She identifies the most successful outcomes as occurring when she has worked collaboratively in a team with key family members, the Recovery Rocks (consumer) community and a NGO support (Richmond Wellbeing) worker. She sees this team approach as “protecting the integrity of the support offered; so it doesn’t break down when it’s needed the most”.

• What gets in the way/ obstructs?

“The idea that a person has a disease often gets in the way because it takes away one’s sense of self-efficacy or their capacity to heal themselves. It’s also reductionist and stops exploration of the psychosocial stressors including varying degrees of trauma that may have precipitated the experience.”

“Fear can also get in the way. When well-meaning people get frightened by unusual behaviour and are reactive and heavily medicate a person who is experiencing some aspects of psychosis. It’s important in my opinion to separate risk behaviours from odd behaviour. Sometimes being allowed to ‘go there’ can result in new understandings that promote healing. Although I recognise this is hard, and workers and loved ones are human too and do get frightened when it seems someone is becoming psychotic.”

4. We understand that many people around the world have been doing this work for decades now but was it hard for you to get the confidence to start?
• What helped you in this?

Theresa says she grew into doing this work by working for the local Hearing Voices Network – co-writing an information booklet and then working both with individuals & groups. She identifies relationship as being key – something most of us know how to do. For many people who are distressed by psychotic experience, their “injury has been in their relationships (developmental trauma), and so many voice hearers struggle with this aspect”. [Research indicates some 50% of people diagnosed with schizophrenia are actually dissociative at the level of the personality and have been traumatised developmentally.]

Theresa’s advice to other practitioners is to not take things personally if the person switches from “idealising you to thinking you’re the most insensitive horrible person in the world” (shifting from positive to negative transference).
“The supportive colleague can be useful to keep you emotionally strong.
And also learning from training events – I did a lot of this when I first started and this provided a sense of confidence and important theoretical understandings and techniques.”

5. What have been the greatest challenges in working in this way and how have you worked with them?

Theresa states that her greatest challenge to date has been “maintaining the therapeutic relationship during an acute psychotic break” which she identifies as ” and yet can be incredibly hard to do and very taxing emotionally”.
Things she’s learnt from experiencing this are:
* “Focus on nothing other than maintaining the relationship,
* Be transparent always i.e., don’t talk about the person to others without consent and if you do then tell the person what was discussed,
* Don’t pussy foot about things; be honest,
* Don’t take things personally (they could be mean to you),
* Keep in touch without being demanding, and respect the need for space.
* Understand they may cease contact and sometimes there is nothing you can do about that. In my experience people have come back even after months or years; because of the relationship.”

Some things she has learnt from the people she has worked with include:
• “Don’t be overly intrusive until a trusting relationship is established; Paranoia is made far worse when a person feels vulnerable after sharing very personal information about their life.
• Learn to sit quietly at times and not to fill every gap with talk. People who are hearing voices can feel overwhelmed if you never shut up. They have a conversation going on in their head!
• Respect defence mechanisms they are there for a reason. For example, avoidance. A client warned me to not ask about his life prior to 14 years of age because if I did I would get a very violent character coming through. He gradually volunteered this when he was ready.
• Work slowly, let the person set the pace – they needs to learn new skills and mechanisms to cope before working on reconnecting psychotic experiences with lived experiences. Otherwise we risk re-traumatising them.”

6. What keeps you going? What keeps your own hope up?

“Keeping contact with others who also do this work and knowing that people really can overcome these challenges and have a meaningful life. I’ve seen this personally and also more famous examples. Also acknowledging that it can take many years – and that’s okay.”

7. What advice would you give someone who was interested in finding out more about psychosocial approaches to psychosis?

Get some training: Ros offers it, as does the Hearing Voices Network W.A. through Richmond Wellbeing; also speak to the people themselves who experience psychosis about their experience, remembering that, given that around 70% of people with these experiences have a background of trauma, it may be more appropriate to come from a perspective of “what happened to you?” rather than “what’s wrong with you?”

It would be very helpful to go to the websites you’ve heard about today – ISPS and Intervoice – and do some reading.
You could also ask to attend a Hearing Voices Group which are support groups for people with these experiences to enable them to share coping strategies and assist them in accepting and mastering their experience.

Above all, the most important advice we could give you today is to encourage you to have an open mind and investigate these other ways of viewing psychotic experience. You may, like us, discover how a different frame of reference and understanding may in fact enable the people you work with to experience real and measurable positive change in their lives.

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