A Service User Perspective

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 • Experience of treatment during the EDIE trial

3. Life experiences • Family & attachment problems (early, long-term & later) • Adverse changes in life circumstances (changes of financial security & home) • Traumas (including physical attacks, muggings etc) • 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’) • Self-esteem (sense of self disrupted) • Depression

5. General psychological problems (when things got worse, 1998) • Stress (inability to cope, anger, confusion) • Anxiety (particularly social anxiety) • 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’ • 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)

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

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

9. Breakdown of social ability • 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) • Decreased closeness with others (emotional numbness, ‘closing down’, distancing)

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

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

12. Professional help before EDIE • Help-seeking with GP (late 1999 - prescription of anti-depressants, referral to counsellor, referral to psychiatrist): in general, a negative experience • University counselling (2000): very helpful

13. Experience of EDIE therapy (2001) • Friendly & informal • Comfortable, practical & optimistic language & tone of conversation • Normalising (perhaps the single most helpful aspect?) • Challenging fears • 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) • Context specific exploration (of my issues; not an impersonal diagnostic appraisal) • Task & goal oriented (allowing me to be active in the treatment process) • 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) • 6 years free: will I ever experience a relapse?

16. EDIE Monitoring • 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 structured & grounded process (simplification – quantifying – of current issues) • 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 (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 (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’ 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’

20. ‘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’

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’

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’

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’

25. ‘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’ ‘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’

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’

28. Summary • Life circumstances, relationships, trauma & substance use: central issues • 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 • Service user involvement: valuable (can help with insight, engagement etc)