A Service User A Service User PerspectivePerspective

Rory Byrne, Service User Rory Byrne, Service User Representative and Research Representative and Research

Assistant, EDIT (Salford) & EDIE 2 Assistant, EDIT (Salford) & EDIE 2 (University of Manchester)(University of Manchester)

Before & After (EDIE)Before & After (EDIE)

Life experiences & Psychological Life experiences & Psychological difficultiesdifficulties

Experience of treatment during the Experience of treatment during the EDIE trialEDIE trial

Life experiencesLife experiences

Family & attachment problems (early, Family & attachment problems (early, long-term & later)long-term & later)

Adverse changes in life circumstances Adverse changes in life circumstances (changes of financial security & home)(changes of financial security & home)

Traumas (including physical attacks, Traumas (including physical attacks, muggings etc)muggings etc)

Drug use (long-term cannabis use, Drug use (long-term cannabis use, occasional use of Class A substances)occasional use of Class A substances)

General psychological General psychological problemsproblems

Introversion & introspection Introversion & introspection (voluntary ‘escape from reality’, (voluntary ‘escape from reality’, living in a ‘dream world’)living in a ‘dream world’)

Self-esteem (sense of self disrupted)Self-esteem (sense of self disrupted) DepressionDepression

General psychological General psychological problems (when things got problems (when things got

worse, 1998)worse, 1998) Stress (inability to cope, anger, Stress (inability to cope, anger,

confusion)confusion) Anxiety (particularly social anxiety)Anxiety (particularly social anxiety) Beliefs (religious/other supernatural Beliefs (religious/other supernatural

beliefs increasingly pervasive; fears beliefs increasingly pervasive; fears of mental illness – a dark and serious of mental illness – a dark and serious worry)worry)

1999: A bad year1999: A bad year Life experiences & psychological problems Life experiences & psychological problems

becoming overwhelming (serious family becoming overwhelming (serious family illness, muggings etc): ‘everything is ending’illness, muggings etc): ‘everything is ending’

Family relationships, romantic relationships Family relationships, romantic relationships & friendships strained & stressful & friendships strained & stressful (increasingly difficult to be with other people (increasingly difficult to be with other people at work, socially, at home etc)at work, socially, at home etc)

Withdrawing socially (too much time alone, Withdrawing socially (too much time alone, thinking, worrying & not talking to people thinking, worrying & not talking to people about my worries)about my worries)

1999: A bad dream1999: A bad dream

Confusion, disordered thinking (‘can’t Confusion, disordered thinking (‘can’t think straight’), a sense of losing controlthink straight’), a sense of losing control

Emergence of serious anxiety & uneaseEmergence of serious anxiety & unease Feeling different, not normal, unusual, Feeling different, not normal, unusual,

unreal – a change (in myself & unreal – a change (in myself & compared to others): compared to others): ‘I’m going mad’‘I’m going mad’

General & social anxiety becoming General & social anxiety becoming constant & nightmarish constant & nightmarish

Depression deepening (feeling doomed)Depression deepening (feeling doomed)

Breakdown of social abilityBreakdown of social ability

Becoming impossible to relax & be with others Becoming impossible to relax & be with others Constant awareness & monitoring of thoughts Constant awareness & monitoring of thoughts

& feelings& feelings Severe self-consciousnessSevere self-consciousness Psychologically exposed (lack of social Psychologically exposed (lack of social

defences)defences) Fear of seeming strange (appearance, Fear of seeming strange (appearance,

conversation etc)conversation etc) Fear of negative reactions (rejection etc)Fear of negative reactions (rejection etc) ‘‘Acting normal’ (exhausting)Acting normal’ (exhausting)

Breakdown of social abilityBreakdown of social ability

Eye-contact (uncomfortable, strange, Eye-contact (uncomfortable, strange, frightening: fear of others seeing frightening: fear of others seeing ‘madness’ in my eyes)‘madness’ in my eyes)

Conversational skills seriously Conversational skills seriously impaired (drying up in conversation – impaired (drying up in conversation – fear of speaking strangely – lack of fear of speaking strangely – lack of humour etc)humour etc)

Decreased closeness with others Decreased closeness with others (emotional numbness, ‘closing down’, (emotional numbness, ‘closing down’, distancing)distancing)

Unusual experiencesUnusual experiences

Delusional thinking (general, Delusional thinking (general, persecutory & grandiose)persecutory & grandiose)

Ideas of referenceIdeas of reference Fear of thought broadcastFear of thought broadcast Suspiciousness/paranoiaSuspiciousness/paranoia

‘‘I need help’I need help’

(fear, confusion, isolation)(fear, confusion, isolation)

Professional help before Professional help before EDIEEDIE

Help-seeking with GP (late 1999 - Help-seeking with GP (late 1999 - prescription of anti-depressants, prescription of anti-depressants, referral to counsellor, referral to referral to counsellor, referral to psychiatrist): in general, a negative psychiatrist): in general, a negative experienceexperience

University counselling (2000): very University counselling (2000): very helpful helpful

Experience of EDIE therapy Experience of EDIE therapy (2001)(2001)

Friendly & informalFriendly & informal Comfortable, practical & optimistic Comfortable, practical & optimistic

language & tone of conversationlanguage & tone of conversation Normalising (perhaps the single most Normalising (perhaps the single most

helpful aspect?)helpful aspect?) Challenging fearsChallenging fears Non-stigmatising (‘CT is based on an Non-stigmatising (‘CT is based on an

inherently normalising rationale that inherently normalising rationale that promotes hope’)promotes hope’)

Experience of EDIE therapyExperience of EDIE therapy

Focus on current difficulties (an Focus on current difficulties (an effective simplification) effective simplification)

Context specific exploration (of Context specific exploration (of mymy issues; not an impersonal diagnostic issues; not an impersonal diagnostic appraisal)appraisal)

Task & goal oriented (allowing me to Task & goal oriented (allowing me to be active in the treatment process) be active in the treatment process)

Cognitive & behavioural experiments Cognitive & behavioural experiments (Homework)(Homework)

Experience of EDIE therapyExperience of EDIE therapy

A change for the better, an A change for the better, an improvement, a progression (rather improvement, a progression (rather than just a paralysis of symptoms)than just a paralysis of symptoms)

6 years free: will I ever experience a 6 years free: will I ever experience a relapse?relapse?

EDIE MonitoringEDIE Monitoring

ContinuityContinuity A chance to talk (I may not have A chance to talk (I may not have

talked to anyone close to me about talked to anyone close to me about some of these issues, and other forms some of these issues, and other forms of psychological intervention were not of psychological intervention were not easily available)easily available)

A structured & grounded process A structured & grounded process (simplification – quantifying – of (simplification – quantifying – of current issues)current issues)

A safety net (just in case…)A safety net (just in case…)

After EDIE (What I had After EDIE (What I had learned)learned)

The Psychological model of psychosis The Psychological model of psychosis and its use for anxiety, depression etcand its use for anxiety, depression etc

(This understanding means I won’t (This understanding means I won’t panic about my condition again, just panic about my condition again, just accept it and act positively to improve)accept it and act positively to improve)

The central importance of interpretation The central importance of interpretation & attribution in delusional thinking& attribution in delusional thinking

(This means I won’t misinterpret (This means I won’t misinterpret cognitive intrusions again, even if they cognitive intrusions again, even if they occur)occur)

‘‘A Grounded Theory approach to how A Grounded Theory approach to how people at risk of developing people at risk of developing psychosis narrate their journey into psychosis narrate their journey into and through an early detection for and through an early detection for psychosis service’psychosis service’

Dr Kate HardyDr Kate Hardy

‘ ‘like a dark cloud over your head, you like a dark cloud over your head, you can’t even sleep at night, just there can’t even sleep at night, just there thinking someone is going to come, I thinking someone is going to come, I thought I was in a movie, I’m thought I was in a movie, I’m dreaming, but it’s not a dream’dreaming, but it’s not a dream’

‘‘it just felt like I was drowning, it just felt like I was drowning, everything I did just wasn’t right’everything I did just wasn’t right’

‘ ‘It’s not normal, I’m not normal. I It’s not normal, I’m not normal. I have got, I don’t know, I’m just not have got, I don’t know, I’m just not like anybody else’like anybody else’

‘ ‘no, I don’t feel close to anyone. I no, I don’t feel close to anyone. I don’t properly fit in anywhere. Alone don’t properly fit in anywhere. Alone in a crowd, that’s how I describe it’in a crowd, that’s how I describe it’

I’t just get worse, I was just getting I’t just get worse, I was just getting worse and worse, hearing noise, I worse and worse, hearing noise, I even broke my radio in my bedroom, even broke my radio in my bedroom, I just had enough… just can’t take it, I just had enough… just can’t take it, I have to speak to someone’I have to speak to someone’

‘ ‘I’d like to get some understanding of I’d like to get some understanding of why these triggers are happening why these triggers are happening and what I can do to prevent them and what I can do to prevent them and what to do in the situation when and what to do in the situation when it does occur to stop me from it does occur to stop me from freaking out’freaking out’

‘ ‘What [therapist] did challenged my What [therapist] did challenged my beliefs I had about myself and made beliefs I had about myself and made me rethink things’me rethink things’

‘‘I do recognise that medication is only a I do recognise that medication is only a short term solution and hopefully one short term solution and hopefully one day I won’t need it’day I won’t need it’

‘ ‘so if that’s the short term solution what so if that’s the short term solution what

would you say the longer term solution would you say the longer term solution is?’is?’

‘ ‘Finding a way to deal with it. That’s Finding a way to deal with it. That’s why I’m in the service’why I’m in the service’

‘‘Basically you’re just going over the Basically you’re just going over the same thought, you’re going ‘am I crazy’? same thought, you’re going ‘am I crazy’? And then you’re going ‘well I’m not’ and And then you’re going ‘well I’m not’ and it’s just a big circle and then you’re it’s just a big circle and then you’re conflicting with yourself, but if you have conflicting with yourself, but if you have someone there they can explain, like you someone there they can explain, like you say it to them, they come back with a say it to them, they come back with a different answer, they don’t come back different answer, they don’t come back with the same one that you think all the with the same one that you think all the time and it changes the circle, it changes time and it changes the circle, it changes the pattern’the pattern’

Summary Summary Life circumstances, relationships, trauma Life circumstances, relationships, trauma

& substance use: central issues& substance use: central issues Pathways to care: difficult & haphazard Pathways to care: difficult & haphazard

(‘At-risk’ assessment first line of defence (‘At-risk’ assessment first line of defence for those help-seeking?)for those help-seeking?)

Psychological model more positive and Psychological model more positive and hopeful, less stigmatising (more effective: hopeful, less stigmatising (more effective: lower relapse rates?): communication & lower relapse rates?): communication & normalising central to recoverynormalising central to recovery

Service user involvement: valuable (can Service user involvement: valuable (can help with insight, engagement etc)help with insight, engagement etc)