Peter Bullimore Shaun Hunt & Lyn Argent Making Sense of Problematic, Thoughts, Beliefs & Paranoia

1. Peter Bullimore Shaun Hunt & Lyn Argent Making Sense of Problematic, Thoughts, Beliefs & Paranoia A Lived Experience Perspective Maastricht Interview Training

2. The Maastricht Interview This questionnaire was originally designed as a research tool to elicit information from people who experience paranoia. It has proved to be extremely useful in getting a much fuller picture of the shared experiences of people who experience paranoia, disabling beliefs and fears, and the results have subsequently been used to develop a range of coping strategies that can help person to come to terms with their experience.

3. The Maastricht Interview As a result of using this questionnaire, we discovered that as well as its value for research, it also proved to be a good way of beginning the process of exploring a persons frightening experiences and - as a means of developing the confidence of mental health workers who want to work with paranoia and distressing beliefs

4. The Maastricht Interview It is important to stress that this questionnaire was developed by people with lived experience of paranoia in partnership with mental health professionals, and that the people with the lived experience are regarded as being the experts and full partners in the process of finding solutions to the difficulties that paranoia and distressing beliefs can sometimes cause.

5. MAKING SENSE OF PROBLEMATIC THOUGHTS, BELIEFS & PARANOIA: Step 1 The Interview: The interview is a semi-structured questionnaire. To be completed in collaboration with a person who has problematic, thoughts, beliefs or paranoia

6. MAKING SENSE OF PROBLEMATIC THOUGHTS, BELIEFS & PARANOIA: Step 2 Writing the Report: The material from the interview is carefully selected, distilled and organised. It is then written up as a report of the persons experience.

7. MAKING SENSE OF PROBLEMATIC THOUGHTS, BELIEFS & PARANOIA: Step 3 Developing the construct: Developing a construct is the final step in analysing the relationship between and a person’s life history and their experiences . The main purpose is to try and get an answer to two questions:

8. MAKING SENSE OF PROBLEMATIC THOUGHTS, BELIEFS & PARANOIA: What fears in the persons life do the experiences represent? Who or what created the fears in the persons life?

9. During the Interview • The interview can trigger emotions to which the person might react. If this happens it is normal. • If the person panics or their experiences become more fearful check who they can contact in the first 24 hours • React in a calm way if they talk about trauma. Don’t be afraid of it. However do not explore the trauma further at this point. After the interview one can discuss what the person wants to do about it.

10. Demographic Data • It makes sense to start of with this data, particularly if you will be discussing the report within a team. In one or two sentences, you should record the gender, age • Marital status, family structure, housing condition, education and employment situation of the interviewee. This is just a thumb-nail sketch; do not try to give too much information or it will become confusing.

11. Trigger, Conspiracy, Conviction • During the interview some of the questions are repeated at each stage, this is to highlight how the beliefs have become more fixed through the three stages

12. THE NATURE OF THE EXPERIENCE IT’S SELF • How would you describe your experiences, paranoia, intrusive thoughts, problematic beliefs or other description? • What or who are involved in your experiences? • Do other people have the same experiences as you? • Do you recognise any steps in how your experiences develop, first step trigger, second step conspiracy, third step conviction?

13. FOCUS OF THE EXPERIENCE • What is the focus of your experience e.g. M15, police, religion etc? • Do you feel people are conspiring against you? • Do you ever feel that you are living in a surreal world • (Living in another world or two worlds) • Do your experiences protect you? • Do you feel your body has been taken over by someone or something?

14. THE HISTORY OF THE T/B/P • When did the person’s experiences begin? What happened? (Prior to each experience, this is to establish how many periods of paranoia there has been) • Have the experiences changed for example from positive into negative and what had happened? • Follow the list of circumstances but do not put all the information under this heading some might belong under childhood. • Which of the above events still influence your experiences today?

15. WHAT TRIGGERS THE EXPERIENCE? • Certain places, associations, smells, phobias • (Is there a significance to the triggers) • Emotions: follow the list • Also notice if there are little or no emotions.

16. EARLY WARNING SIGNS? • Racing thoughts • Isolation • Altered sleep pattern • The aim is to establish what happens prior to the warning sign • When a warning sign occurs does the person take action? • If not why not?

17. CHILDHOOD • Was the childhood pleasant or stressful? • Was the person sexually, physically, emotionally abused, neglected or bullied? • No content of the experience should be put in the report

18. HOW DO YOU EXPLAIN THE ORIGIN OF YOUR EXPERIENCE? • What is the persons explanation for their experiences? • Does their explanation make them feel powerless • (If seen as an illness) • Or does it empower them (It keeps them safe)

19. WHAT IMPACT DO YOUR EXPERIENCES HAVE ON YOUR WAY OF LIFE? • Does the experience influence their emotions? • Do the experiences make them feel special? • Do the experiences frighten them? • Does it impact on others if yes how?

20. COPING STATEGIES • Which coping strategies are successful? • Is it passive or active? • Is it systematic? • If it works do they use it systematically if not why not?

21. MEDICAL HISTORY • Has the person been in hospital care because of their experiences? • Which type of therapy have they had concerning their experiences?

22. SOCIAL NETWORK • How many people know about their experience and who can they speak to about it?

23. Traps • Concerning: • Person with the experiences • Interviewer

24. The Interviewee Might • Give too much information • Talk about things not relevant • Digress and by doing so take the interviewer away from their own line of thoughts • Not concentrate on the questions

25. Interviewer might • Forget to mention goal of the interview to understand the experience; look for the relation with the life history • Lead themselves away from the subject or question asked • Start therapy during the interview if the person talks about trauma validate the experience but do not expand at this stage • Be hindered by her/his own prejudices

26. Advice • Summarise the information given and repeat it back to the person • Ask questions until you understand exactly what is meant/ do not assume

27. Advice • Make a separate heading and make the relevant notes that do not fit into the questions asked • E.g. If they talk about hearing voices we will interview them about this separately

28. The Report • The interview should give you a great deal of information about the experiences of the person • The headings from the interview form the basis of the structure. Some people are not always used to talking about their experiences and are influenced by their fears and emotions. • Try not let this affect the report, only set down information that each heading requires

29. THE REPORT This is an example that has been set out, based on a real report presented by a student followed by our comments. Finally, there is a summary (in italics) of the information that should have been included. Mrs. R. is divorced and has two children of 10 and 15years old. The youngest is a girl and the oldest is a boy. She is now 40years old. She went to an (all girls school) and after that she did a course in chiropody and would like to be trained as a hairdresser. She is currently unemployed.

30. Anne Roberts • Always use first names in a report. This is less distancing for the person, but retains their identity • Important Information- that she lives on her own and that her children live with their father-should not have been left out • It is unhelpful to separate age and gender. ‘She has an 10 year old daughter and 15year old son’ is also easier to remember • The facts that she followed a chiropody course and that she wishes to be trained as a hairdresser are not relevant

31. Report/Response • Anne Roberts is 40 years old, divorced and living on her own. She has an 10-year-old daughter and a 15-year-old son. They live with their father and stepmother. Helen went to an (all girls school). She is currently unemployed.

32. THE NATURE OF THE EXPERIENCE Mrs. R experiences distressing thoughts. The thoughts are always about being abducted by aliens. The main alien is male and Mrs. R guesses his age to be approximately 55. She says that she does not recognise the alien as being anyone she knows. Mrs. R says the thoughts are inside her head, in her brain. She says she knows that thoughts are part of herself, but she experiences them as being put there by someone else. The thoughts are part of herself. She is not able to dismiss the thoughts . She also feels that someone has taken over her body. These experiences do not invariably accompany the thoughts. Mrs. R says the thoughts are always present, but not the other sensations. According to Mrs. R, the thoughts are caused by the anxiety that built up during her marriage. She says she became vulnerable during her marriage.

33. Nature of experience response • The following sentence should be cut and included under a different headings:The thoughts are always about being abducted by aliens. The main alien is male and Mrs. R guesses his age to be approximately 55. She says that she does not recognise the alien as being anyone she knows (Focus) • Avoid repetition within a section (The thoughts are part of herself)

34. Nature of experience/ Response • Anne Roberts experiences distressing thoughts .She describes them as being in her brain. She says she knows the thoughts are part of herself, but she perceives them as being put there by someone else. She is not able to dismiss them. She also feels that someone has taken over her body. These experiences do not invariably accompany the thoughts

35. Workshop Program – Day 1 First Interview/Questionnaire (approx 2-3 hours) Write report from first interview (approx 1.5 hours) Report marking and feedback Update report following marking and feedback Start Construct (if time allows) End Day 1

36. Workshop Program – Day 2 Second interview/Questionnaire (approx 2.5 hours) Write report from second interview (approx 1.5 hours) Report marking and feedback Update report following marking and feedback Prepare Construct from first interview Day 1 (or 2nd interview if first construct done) (approx 1 hour)

37. The Process • You will conduct interviews in groups. Each interviewer taking turns to ask a section of the interview. • Every interviewer will complete full questionnaire. • Reports will be written individually or in a group of 2 (Max) • No who put what where in childhood section

38. Important - Remember • This is a training workshop and is much more fast paced than what would happen in real life scenario. • MI process would normally be conducted over possibly 6-8 sessions with client often more, depending on client. • MI would not normally be undertaken until total trust and consent has been reached with client (weeks/months) • This process will have an emotional impact on you and the person/s you will be interviewing.

39. Setting the context Within the context of an established relationship Ensure immediate support if required Gender sensitive Establish short term coping strategies, prior to the interview We offer online supervision

40. The Report Angie Jackson, 44 year old single woman, she is housed by the local authority and is currently unemployed. She has no children. The nature of the experience Angie feels she is being persecuted by members of society. The people who are involved in the persecution are people who work in the psychiatric system. This consists of a social worker and a psychiatrist. She is not sure whether other people experience the same ideas. At times she experiences feelings of powerlessness and not having any control. These feelings are put there by someone else. Focus The focus of her paranoia are people in power, psychiatric services, police, mum her grandfather, people who controlled her, she thinks she will be arrested as child abuser and she is being monitored in her home The History Angie first started to experience feelings of paranoia at the age of seven. Her mother was a heroin addict who at times had to be injected with heroin by Angie. Her mother died of an overdose. Angie was never sure whether she had administered the fatal dose. When she was 21 she entered a relationship with a man who became very violent and used to use mind games on her. Her first admission to psychiatric care was at the age of 23 through extreme paranoia and she became a revolving door patient receiving a diagnosis of schizo-affective disorder. She has continued to take anti-psychotics but the experience of paranoia has continued. Her last severe episode of paranoia came after she discontinued her medication abruptly. She had flashbacks of abuse and became convinced she had abused children and handed herself into the police saying she had filmed the abuse.

41. Triggers She will say she can smell urine when no one else can. Friday mornings, she often describes feeling fearful before other experiences happen. Early warning signs Angie describes varied early warning signs her thoughts will start to race to the point she cannot rationalize her thinking, she will see visions of children being abused and dead children, an altered sleep pattern, more isolation, taking illegal drugs to stay awake Childhood Angie’s grandfather gained custody of Angie and her sister and started to sexually and emotionally abuse them both, he put all the adult responsibility on Angie by making her hit her sister whilst he abused her. He told her he was also a hypnotist and would put a bar in her head to stop her remembering the events. He would often bring his friends round to participate in the abuse. Angie became very fearful of anyone she felt had power over her. Her behavior spiraled out of control. She would get angry and shout. She was placed in a school for disturbed children where she was given anti-psychotic medication at the age of 14. She finds it very difficult to say “NO” to anyone in authority

42. Origins Angie believes the paranoia was created by her grandfather who is now dead but used his power of hypnosis to control her. She also thinks it’s because she is a bad person who may have killed her mother. ImpactShe will become very isolated refusing to leave her home, she will also refuse to sleep in fear of someone entering her home; she will stop riding her bicycle which is something she enjoys. Her boyfriend gets angry with her this makes her feel bad for upsetting him

43. Behavioral strategiesShe avoids going out and using public transport. This makes her feel safe. She also uses alcohol and drugs to block out thoughts and feelings but this is only a short term solution. Cognitive strategiesShe didn’t feel that she had any cognitive strategies.Risky strategiesShe doesn’t use any risky coping strategiesMedical historyShe has had many psychiatric hospital admissions the longest lasting for 18 months where she saw many different psychiatrists and the only therapy she was offered was drug treatment.Social networkThe main people who know about her paranoia are her boyfriend who will talk to her about it, her friend PB who listens often and her sister who won’tdiscuss it at all.

44. Angie ConstructFocusPeople who are in power and have impacted upon her life; psychiatric services, police, grandfather, mother and ex partner are all people who have controlled her. She is also monitored by the camera within her flatHistoryTherehave been five main episodes of paranoiaBeing forced to give her mother heroin and not knowing if she administered the fatal doseHaving to hit her sister while the grandfather abused themThe relationship with the man who used to play mind games with herStopping her medication abruptly and thinking she was a child abuserTaken to hospital by the police and detained by psychiatric services Content of Trigger Thought She thinks she is an abuser due to administering heroin to her mother, being made to hit her sister during the abuse they experienced, this leads to anxiety about society; creating a conspiracy “she is being controlled by others” and has no control within her life, creating the conviction

45. Influence of the People on the Trigger ThoughtHer mother forcing her to give her heroin started the cycle of abuseThe grandfather abusing her and making her complicit in the abuse makes her feel like an abuserThe boyfriend who told her she would never be free of himPsychiatrists, social workers and police taking her to hospital and not believing her, this created her conviction

46. Conclusion The paranoia is realistic given the diverse situation that Angie was in. The trigger thought can be seen as a realistic reaction to very difficult and abnormal realities. Angie’s experience’s highlight the powerlessness and disempowerment that she has had through her life with people in authority who have abused her, not being believed by people in services continued the addictive cycle of abuse To understand the paranoia it is important to find the reality base for the trigger thought or feeling. It therefore is important to see if the stress can be changed by Angie or ways can be found to cope with the stress.To help her cope with her paranoia she needs to:Accept her paranoia has a reality baseAnalyze the stress that leads to the trigger thoughtSupport her with the stress or help her change the stressful situation

47. Contacts peterbullimore@yahoo.co.uk www.hearing-voices.org www.DrBobJohnson.org www.melissarobertsfoundation.org.au www.nationalparanoianetwork.org