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Survivor Room / Re: Progress.
« Last post by so sad on March 23, 2021, 11:16:42 AM »
Hi Terri

What a brilliant post to come across  :yahoo:

You really have made a tonne of progress - very proud of you.  You are living proof that things can change and for the better. DBT is incredibly hard so well done with sticking at it and making it work for you.

Congratulations on the weight loss. That is also a really tough thing to battle with but clearly you are winning. It does make a bug difference to how we feel and the exercise is a great thing to be doing and enjoying.

I have to admit to being envious of you going to Uni (maybe I should use DBT to manage that  :XD:) - I wish I had your strength and courage.

Please keep us informed - I always look out for your posts.

Survivor Room / Re: Progress.
« Last post by Tigger on March 22, 2021, 09:18:15 AM »
Terri this sounds so great. I have  come backwards and forwards to this forum for years, so have followed you along the way.  I'm really pleased you are doing so well and glad you have shared as it gives hope to everybody struggling. Keep yp the good work  :emot-thumbsup11:
Survivor Room / Re: Medical procedures/examinations with past trauma *SA*
« Last post by Vermilion on March 13, 2021, 01:13:57 PM »
So this sh** is just part of being a woman. Gosh, that makes me feel heaps better /s. I've tried to ask for professional help but everywhere is restricted because of the Covid. Maybe I am being stupid after all, even professionals can't help.

Archived research topics / Re: Any thoughts or perspectives on thesis wording please
« Last post by Lorien on March 12, 2021, 01:19:19 AM »
I'm doing a Social Work Degree and we have an experts by experience module each year. Throughout the first year one both the experts and students felt a bit weird about it. It does seem to be the new in phrase, but it is odd. We discussed that it might be because of the disparity in title to that lived experience. Often people are not treated as the experts in their own lives and are instead told by 'experts' what their experiences are. Many of the people we met felt that the discomfort around 'service user' and in some more cringey services 'customers' belonged to the professional not the individual.

Personally in a health setting I'd prefer patient because that is universal and holds little negative connotation. Re professionals I prefer that or practitioners depending on situation. To call them experts also has some questions. While many will have a high level of broad knowledge, very few are 'experts' it kind of waters down its meaning eg Simon Barron-Cohen is a recognised expert in Autism, but most Psychiatrists know very little about it and often misdiagnose as something else. If you consider power dynamics in this context, to label a person as an expert exaggerates the imbalance and potentially adds to difficulties in challenging opinions.

The other two seem fine although due to its use by services repeated self harm while accurate might feel a bit loaded. I couldn't think of a word that wouldn't be though, so maybe this is more related to poor service delivery than linguistics.
Survivor Room / Medical procedures/examinations with past trauma *SA*
« Last post by Vermilion on March 08, 2021, 08:44:22 PM »
So I'm not going to say much about my experiences here because I have a different thread for that. I'm just wondering if anyone has any good techniques for coping with these types of things. I find it difficult to tell the doctor because a, they often don't listen and b, a large part of the problem for me is some bad experiences with doctors in the past including when I was a child so I find it really difficult to trust doctors especially if it's one I haven't seen before.

So does anyone have any thoughts/experiences/perspectives etc? I've been working on 'coping skills' in DBT as well as grounding techniques and I've got Diazepam that I can take if I need to but I'm wondering what else people find helpful.
Personally I would prefer the term service user rather than 'Experts by Lived Experience'. The word 'expert' implies a level of knowledge that is much higher than what I have and I imagine that the average person (i.e non professional) would interpret it this way.I also think that the term service user would be very apt if that's what you're specifically writing about.
I possibly should have added, if you do have any thoughts - then please just reply to this thread! Thank you  :)
Archived research topics / Any thoughts or perspectives on thesis wording please
« Last post by March345 on March 05, 2021, 11:02:25 AM »
Hi everyone,

Firstly, thanks so much for spending the time reading this and possibly offering your thoughts. I am a Trainee Clinical Psychologist, and currently my thesis is undergoing ethical review. The study is looking at service responses to repeated self-harm in adults. I've found quite a lot of the research is fragmented, and often focusses on just one perspective, often recruiting people who are actively engaged with services and missing out on key voices! Therefore, I plan to interview clinicians, people who may be currently using services, or may have used them in the past but do not currently for whatever reason that may be.

At this stage though, I would be really keen just to hear people's thoughts and perspectives on the wording I am planning to use (at this point) in the participant facing documents. For example, does it make sense? Does it feel inclusive, or possibly exclusive? Would you suggest changes? The main phrases I'm hoping to collect thoughts on are as follows:

Experts by Lived Experience - this is the term I'm thinking of using to refer to people who repeatedly self-harm, and either currently, or have in the past received support from services in relation to self-harm. I have made a deliberate move away from using the term 'patient', due to associations with the medical model, and the fact that some people may not be/identify as a 'patient'
Experts by Professional Experience - this is the term I'm thinking of using to refer to people who provide services in a professional capacity e.g. clinicians, care staff
Repeated self-harm - I'm using this term to refer to self-harm on more than one occasion, although prior to interviewing participants I will ask how they wish to refer to this b/h
Service Responses - I'm using this term to refer to any responses from services in relation to self-harm, this may be A&E, GP, during therapy, contact with third party organisations e.g. Samaritans

Any thoughts or views would be really valued and appreciated. Thanks again for your time, any questions etc. please just let me know :)

Archived research topics / Self-harm thoughts and behaviours in the student population
« Last post by AZP on February 23, 2021, 09:25:30 AM »
Hello everyone,

Thank you for taking the time to read this post and consider taking part in this study. We are currently recruiting UK university students (aged 18 and above and who have experienced self-harm thoughts in the last three months) for an online study designed to understand how it might be possible to better help them manage self-harm thoughts and behaviours.
The study invites you to complete two questionnaires, three months apart. Each questionnaire will ask you about your self-harm thoughts and behaviours over the last three months and other thoughts/feelings you may have had. We understand this is a sensitive area, so please think carefully before taking part.

For more information and to take part in the study, please click on the following link:

Thank you, your help is greatly appreciated.

Survivor Room / MOVED: SH on feet/toes
« Last post by Rob on February 20, 2021, 07:23:27 PM »
This topic has been moved to Here and Now Room for best support.
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