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A Service User Perspective Rory Byrne, Service User Representative and Research Assistant, EDIT (Salford) & EDIE 2 (University of Manchester)

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Presentation on theme: "A Service User Perspective Rory Byrne, Service User Representative and Research Assistant, EDIT (Salford) & EDIE 2 (University of Manchester)"— Presentation transcript:

1 A Service User Perspective Rory Byrne, Service User Representative and Research Assistant, EDIT (Salford) & EDIE 2 (University of Manchester)

2 Before & After (EDIE) Life experiences & Psychological difficulties Life experiences & Psychological difficulties Experience of treatment during the EDIE trial Experience of treatment during the EDIE trial

3 Life experiences Family & attachment problems (early, long-term & later) Family & attachment problems (early, long-term & later) Adverse changes in life circumstances (changes of financial security & home) Adverse changes in life circumstances (changes of financial security & home) Traumas (including physical attacks, muggings etc) Traumas (including physical attacks, muggings etc) Drug use (long-term cannabis use, occasional use of Class A substances) Drug use (long-term cannabis use, occasional use of Class A substances)

4 General psychological problems Introversion & introspection (voluntary ‘escape from reality’, living in a ‘dream world’) Introversion & introspection (voluntary ‘escape from reality’, living in a ‘dream world’) Self-esteem (sense of self disrupted) Self-esteem (sense of self disrupted) Depression Depression

5 General psychological problems (when things got worse, 1998) Stress (inability to cope, anger, confusion) Stress (inability to cope, anger, confusion) Anxiety (particularly social anxiety) Anxiety (particularly social anxiety) Beliefs (religious/other supernatural beliefs increasingly pervasive; fears of mental illness – a dark and serious worry) Beliefs (religious/other supernatural beliefs increasingly pervasive; fears of mental illness – a dark and serious worry)

6 1999: A bad year Life experiences & psychological problems becoming overwhelming (serious family illness, muggings etc): ‘everything is ending’ Life experiences & psychological problems becoming overwhelming (serious family illness, muggings etc): ‘everything is ending’ Family relationships, romantic relationships & friendships strained & stressful (increasingly difficult to be with other people at work, socially, at home etc) Family relationships, romantic relationships & friendships strained & stressful (increasingly difficult to be with other people at work, socially, at home etc) Withdrawing socially (too much time alone, thinking, worrying & not talking to people about my worries) Withdrawing socially (too much time alone, thinking, worrying & not talking to people about my worries)

7 1999: A bad dream Confusion, disordered thinking (‘can’t think straight’), a sense of losing control Confusion, disordered thinking (‘can’t think straight’), a sense of losing control Emergence of serious anxiety & unease Emergence of serious anxiety & unease Feeling different, not normal, unusual, unreal – a change (in myself & compared to others): ‘I’m going mad’ Feeling different, not normal, unusual, unreal – a change (in myself & compared to others): ‘I’m going mad’ General & social anxiety becoming constant & nightmarish General & social anxiety becoming constant & nightmarish Depression deepening (feeling doomed) Depression deepening (feeling doomed)

8 Breakdown of social ability Becoming impossible to relax & be with others Becoming impossible to relax & be with others Constant awareness & monitoring of thoughts & feelings Constant awareness & monitoring of thoughts & feelings Severe self-consciousness Severe self-consciousness Psychologically exposed (lack of social defences) Psychologically exposed (lack of social defences) Fear of seeming strange (appearance, conversation etc) Fear of seeming strange (appearance, conversation etc) Fear of negative reactions (rejection etc) Fear of negative reactions (rejection etc) ‘Acting normal’ (exhausting) ‘Acting normal’ (exhausting)

9 Breakdown of social ability Eye-contact (uncomfortable, strange, frightening: fear of others seeing ‘madness’ in my eyes) Eye-contact (uncomfortable, strange, frightening: fear of others seeing ‘madness’ in my eyes) Conversational skills seriously impaired (drying up in conversation – fear of speaking strangely – lack of humour etc) Conversational skills seriously impaired (drying up in conversation – fear of speaking strangely – lack of humour etc) Decreased closeness with others (emotional numbness, ‘closing down’, distancing) Decreased closeness with others (emotional numbness, ‘closing down’, distancing)

10 Unusual experiences Delusional thinking (general, persecutory & grandiose) Delusional thinking (general, persecutory & grandiose) Ideas of reference Ideas of reference Fear of thought broadcast Fear of thought broadcast Suspiciousness/paranoia Suspiciousness/paranoia

11 ‘I need help’ (fear, confusion, isolation)

12 Professional help before EDIE Help-seeking with GP (late prescription of anti-depressants, referral to counsellor, referral to psychiatrist): in general, a negative experience Help-seeking with GP (late prescription of anti-depressants, referral to counsellor, referral to psychiatrist): in general, a negative experience University counselling (2000): very helpful University counselling (2000): very helpful

13 Experience of EDIE therapy (2001) Friendly & informal Friendly & informal Comfortable, practical & optimistic language & tone of conversation Comfortable, practical & optimistic language & tone of conversation Normalising (perhaps the single most helpful aspect?) Normalising (perhaps the single most helpful aspect?) Challenging fears Challenging fears Non-stigmatising (‘CT is based on an inherently normalising rationale that promotes hope’) Non-stigmatising (‘CT is based on an inherently normalising rationale that promotes hope’)

14 Experience of EDIE therapy Focus on current difficulties (an effective simplification) Focus on current difficulties (an effective simplification) Context specific exploration (of my issues; not an impersonal diagnostic appraisal) Context specific exploration (of my issues; not an impersonal diagnostic appraisal) Task & goal oriented (allowing me to be active in the treatment process) Task & goal oriented (allowing me to be active in the treatment process) Cognitive & behavioural experiments (Homework) Cognitive & behavioural experiments (Homework)

15 Experience of EDIE therapy A change for the better, an improvement, a progression (rather than just a paralysis of symptoms) A change for the better, an improvement, a progression (rather than just a paralysis of symptoms) 6 years free: will I ever experience a relapse? 6 years free: will I ever experience a relapse?

16 EDIE Monitoring Continuity Continuity A chance to talk (I may not have talked to anyone close to me about some of these issues, and other forms of psychological intervention were not easily available) A chance to talk (I may not have talked to anyone close to me about some of these issues, and other forms of psychological intervention were not easily available) A structured & grounded process (simplification – quantifying – of current issues) A structured & grounded process (simplification – quantifying – of current issues) A safety net (just in case…) A safety net (just in case…)

17 After EDIE (What I had learned) The Psychological model of psychosis and its use for anxiety, depression etc The Psychological model of psychosis and its use for anxiety, depression etc (This understanding means I won’t panic about my condition again, just accept it and act positively to improve) (This understanding means I won’t panic about my condition again, just accept it and act positively to improve) The central importance of interpretation & attribution in delusional thinking The central importance of interpretation & attribution in delusional thinking (This means I won’t misinterpret cognitive intrusions again, even if they occur) (This means I won’t misinterpret cognitive intrusions again, even if they occur)

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

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

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

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

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

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

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

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

26 ‘I do recognise that medication is only a short term solution and hopefully one day I won’t need it’ ‘I do recognise that medication is only a short term solution and hopefully one day I won’t need it’ ‘so if that’s the short term solution what would you say the longer term solution is?’ ‘so if that’s the short term solution what would you say the longer term solution is?’ ‘Finding a way to deal with it. That’s why I’m in the service’ ‘Finding a way to deal with it. That’s why I’m in the service’

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

28 Summary Life circumstances, relationships, trauma & substance use: central issues Life circumstances, relationships, trauma & substance use: central issues Pathways to care: difficult & haphazard (‘At-risk’ assessment first line of defence for those help- seeking?) Pathways to care: difficult & haphazard (‘At-risk’ assessment first line of defence for those help- seeking?) Psychological model more positive and hopeful, less stigmatising (more effective: lower relapse rates?): communication & normalising central to recovery Psychological model more positive and hopeful, less stigmatising (more effective: lower relapse rates?): communication & normalising central to recovery Service user involvement: valuable (can help with insight, engagement etc) Service user involvement: valuable (can help with insight, engagement etc)


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