Tweetpost alert: I have rather indulged myself on Twitter these last 2 weeks but now the new year and life as usual are properly kicking in so this is going to be my last indulgence for now (he said confidently) and I want to talk about the CEbE programme.
NOTE: I will mention many of our CEbE teachers n this tweet post (with their permission) as I think it is important to acknowledge them here. They are interesting people you may wish to follow. However if you have any criticisms after reading this tweetpost, please direct @ me.
1. So 4 years ago @Sarah_Rae58 , Iliana Rokkou (CPFT R&D liaison officer) and I set up the Conversations with Experts by Experience (CEbE) programme, an educational programme for researchers studying mental illness, led by people with lived experience of mental illness.
2. The aim was to give researchers without a clinical background a chance to hear first hand about the reality and variability of the experience of mental illness and have the opportunity to develop a better understanding of the experiences and conditions they research.
3. We run the programme twice a year. Each round has 5 2-hour discussion groups covering psychosis, mood and anxiety, eating disorders, OCD and borderline personality. The topics are based on our ‘market’ namely what researchers study and want to learn about in Cambridge.
4. Each discussion group has 4-6 EbE teachers, up to 10 researchers and 2 facilitators, one EbE (@Sarah_Rae58, @palsop ) and one clinician (@muzafferkaser, @lesley_cousins1, me).
5. There were a few principles from the very outset. One, we wanted the sessions to be conversations and discussions, not lecture like sessions with EbEs narrating their experiences.
6. Two, we did not want to replicate the power structures of mental health services.i.e. we did not want people with lived experience to be in any kind of subordinate position. So from the beginning we had ‘teachers’ (EbEs) and ‘researchers’.
7. We wanted to ensure that teachers had as much autonomy, agency and control as possible. So teachers decide which sessions they would like to take part in (many take teach on more than one) and if they are well enough to take part in a session.
8. We have some ground rules.
One, we operate on first name terms.
Two, when you introduce yourself, you can say as much as you’d like to say. Researchers are asked to say a bit about their research and their interest in the session (just being interested is fine).
One, we operate on first name terms.
Two, when you introduce yourself, you can say as much as you’d like to say. Researchers are asked to say a bit about their research and their interest in the session (just being interested is fine).
9. Three, maintain respect and confidentiality.
Four, anyone is free to leave (and return to) the session at any point without having to give any explanation.
Four, anyone is free to leave (and return to) the session at any point without having to give any explanation.
10. Five ‘any question can be asked. No one is going to be broken by a question. Its up to each person to decide whether they wish to answer it.’-@palsop
11. We particularly ask people not to censor themselves when talking about difficult experiences with mental health services, and that there is no need to be mindful of the feelings of the clinician facilitator. I usually commiserate through the medium of swearing.
12. Our teachers have come to us from the @CPFT_NHS Recovery college (@sharongilfoyle1) , from research studies, through word of mouth, from @ocdaction and @beatED and some from my clinic (after I am no longer involved their care).
13. After introductions, the session kicks off with whoever has the first question and it goes from there. We break for coffee halfway then carry on till the end of the second hour. The facilitators stay on for a bit afterwards in case anyone needs to/would like to talk.
14. Typically one question leads to others, teachers chip in whenever they like, teachers ask questions of the researchers, and the facilitators try to make sure that everyone gets a chance to ask questions and speak. The sessions are not guided in any direction.
15. All views are permitted, researchers do have their views and models rigorously questioned. We have a lot of veteran teachers now but the principles and rules remain the same.
16. People can say as much as they like, the facilitators will never bring their knowledge of a teacher’s previous experience into the session. Teachers and EbE facilitators get paid for their time and travel expenses
17. We have been very fortunate to supported by @CPFT_NHS @edbullmore and received a Small Project grant from @rcpsych that really helped us launch this in the second year.
18. So, how has it gone? Well, beautifully. We’ve known along the way that the sessions have gone very well and been well received. They have always been very interesting and many of our teachers and researchers have come back several times.
19. The feedback we have formally collected has been overwhelmingly positive from both researchers and teachers. Teachers have been extraordinarily kind, patient and generous with their time and experience. Researchers have been interested, respectful and compassionate.
20. Teacher:'It was definitely the first time I’ve ever had the opportunity for this kind of meeting and discussion between people with lived experience and professionals. I wish I had found such open, non-judgemental, non stereotyped attitudes and environments when seeking trt.'
21. This is a unique project and it always feels unique. For me it has been an incredible privilege and honour to be part of this. I have learnt a huge amount and it has had a huge impact on my clinical practice including my relationships with my patients in my clinic.
22. I am particularly grateful to my colleagues in this endeavour, particualrly @Sarah_Rae58 and Iliana R, and to all the teachers who have given so much to this programme, even when they have known that each participation will take a fair bit out of them.
23. I think it is crucial that we get more lived experience into psychiatric and psychological research and training. This is by its nature a small project but a powerful one. If you'd like to think of starting a CEbE programme of your own contact @Sarah_Rae58 or me.
24. And here are some of our fantastic teachers: @AshCurryOcd @india_george @brownie1983 @jfgwells57 @Matthew_arete @mentalhealthgi1 @LukeJCarter @lalunalimon
25. Will get the right handle for @mentalhealthgi1 and forgot to mention Kathy Jones who was one of our first teachers and is now at @CPFT_NHS Recovery college and a Patient Research Ambassador for the trust
26. Got it! the correct handle is @mhpainresearchr
