Fundraising: Manchester (UK) Primary Care research: Exploring Trauma & Distressing Experiences Following Medical Encounters.

[obeat]

https://www.wonderful.org/fundraiser/highlightingtraumafrommedicalencounterswithme-b89a2139?sfns=mo

We're raising funds for the above research. Dr Adeniji is new to the field but his senior supervisors are not. A Professor of GP and a trauma psychologist will provide advice.

This preliminary study will attempt to turn anecdotal reports of emotional trauma into facts and figures. Not an easy task.

One could argue that doctors have been misled for decades by the CBT/GET cult and aren't fully aware of the harm they cause.

We have to fund it ourselves, otherwise it doesn't happen.

Please share. Thank you.

 

[Trish]

This sounds interesting. Can you give any more information about what the research involves. For example how many patients, is it based on questionnaires or interviews, how will patients be selected, how will diagnosis be confirmed etc. Is there a published protocol we can look at?

 

[Sly Saint]

eta: details here
https://www.wonderful.org/fundraiser/highlightingtraumafrommedicalencounterswithme-b89a2139

eta2:

Why would patients want to help support this research?

• A large majority of M.E. patients report traumatic and distressing experiences, following medical encounters.
• They leave the doctor's surgery more upset than when they entered.
• Complaints are made but little changes.
• Now a leading U.K. researcher wishes to document these DISTRESSING AND TRAUMATIC EXPERIENCES.
• We urgently need your help to fundraise for this vital research. There's no other option.
• Once the paper is published, your (anonymous) voice will be heard.
• Your experiences will no longer be hearsay.
• Six month project lead by a medical doctor
• Patients in N.Ireland and UK will be included. Eligibility criteria will apply.

 

[obeat]

This sounds interesting. Can you give any more information about what the research involves. For example how many patients, is it based on questionnaires or interviews, how will patients be selected, how will diagnosis be confirmed etc. Is there a published protocol we can look at?

I'll get back to you soon.

 

[NelliePledge]

Shared to local Facebook group. We had a display at Millions Missing with a white coat with all the negative comments written on it.

My personal experience is relatively minor but I was laughed at for asking if I might have Fibromyalgia because “you don’t get a sore throat with that”. I felt so belittled.

 

[DokaGirl]

Assembling this information into a study would be very helpful in highlighting the fact there is little understanding or help from many in the health professions.

The average person, or the average politician may find it very difficult to believe that a significant percentage of pwME are treated so poorly by those in medicine, and that this is happening world wide.

 

[DokaGirl]

I've mentioned some of my personal experience before: being yelled at - "There's no proof", being lectured about sleep hygiene, and queried as to whether I need (or deserve) biomedical treatment, being treated rudely because I have "cfs", yelled at: "Aren't you better yet?!", and on and on it goes.

If many of these types of encounters were collected, it could be shown this is a pervasive problem. Not just a couple pwME complaining.

 

[DokaGirl]

IMO even the more well meaning medical encounters should be included in the study. Such as the one I had re terrible GI pain: "I can't find anything wrong. How's your home life?" These responses are not helpful, indicate a belief that stress or some other psychological problem is to blame for a very painful physical situation. The patient goes away with another letter on their file saying their illness is all in their head.

 

[JoanNI]

This sounds interesting. Can you give any more information about what the research involves. For example how many patients, is it based on questionnaires or interviews, how will patients be selected, how will diagnosis be confirmed etc. Is there a published protocol we can look at?

Sorry I can’t get on here much, just replying when alerted elsewhere.
Hope this helps
“Telephone interview - minimum
20 patients - more if time and resources permit

We are yet to work out selection but most likely and convenience sample

Patients need to confirm a diagnose of ME - CFS by medical practitioner -

No protocol needed

This is exploratory research social psychology field - new ground needing what we can “a grounded theory approach “
To build understanding of the issue in order to inform and improve medical care and encounters”

 

[Simbindi]

Sorry I can’t get on here much, just replying when alerted elsewhere.
Hope this helps
“Telephone interview - minimum
20 patients - more if time and resources permit

We are yet to work out selection but most likely and convenience sample

Patients need to confirm a diagnose of ME - CFS by medical practitioner -

No protocol needed

This is exploratory research social psychology field - new ground needing what we can “a grounded theory approach “
To build understanding of the issue in order to inform and improve medical care and encounters”

If this is exploratory research, wouldn't an online survey with 'free text' boxes that can be filled in to elaborate as necessary, be an inexpensive way to generate a broader understanding of the issues? Many people with M.E. can't manage phone calls (although some do prefer this over typing).

 

[Tom Kindlon]

 

[lunarainbows]

IMO even the more well meaning medical encounters should be included in the study. Such as the one I had re terrible GI pain: "I can't find anything wrong. How's your home life?" These responses are not helpful, indicate a belief that stress or some other psychological problem is to blame for a very painful physical situation. The patient goes away with another letter on their file saying their illness is all in their head.

I’ve had this. I was lying in bed unable to sit up and I was asked, “so do you get counselling?”

To which I managed to whisper out.. I can’t really talk, to do counselling you know..

 

[lunarainbows]

Sorry I can’t get on here much, just replying when alerted elsewhere.
Hope this helps
“Telephone interview - minimum
20 patients - more if time and resources permit

We are yet to work out selection but most likely and convenience sample

Patients need to confirm a diagnose of ME - CFS by medical practitioner -

No protocol needed

This is exploratory research social psychology field - new ground needing what we can “a grounded theory approach “
To build understanding of the issue in order to inform and improve medical care and encounters”

Can someone talk on our behalf?

 

[TiredSam]

I was teaching a lawyer last week, who was telling me about how she had fired a client, because the client never listened, never took her advice or stuck to what they agreed was the best approach, and kept doing google searches and coming to appointments with printouts supporting her view of what the law should be.

The lawyer spread her hands and said to me "Well, you wouldn't do that if you went to a doctor, would you?"

 

[obeat]

We have a pledge of £2000, so we only need £900 to reach our target.

This is a baseline study which hopefully would lead to something larger with scope for different severities to participate.