Opportunity to share experience of forums like this

[Gambit62]

One of our members Hidden , is involved with organising a panel at a GP conference in October this year.

The title of the panel is 'What kind of rubbish are you reading now?' and the aim of the panel is to have an interactive session which recognises that the internet is part of life, and will get the GPs who chose to attend thinking about how they respond to patients who research their condition, and want to discuss what they have found out.

The session is only an hour long so quite limited but chris193 is hoping to be able open it up with some quotes from patients who have had good and bad experiences with their GP.

chris193 is a member of this forum so is aware of stories and would like to use quotes from these provided they have permission.

The purpose of this post is to

a) provide somewhere where chris193 can explain further and answer questions any of you may have

b) provide a place where people could share suitable quotes/thoughts

c) make members of the forum aware of this in case you wish to contact chris193 privately

[Helsan]

Thanks sounds like a brilliant idea. Nothing comes to mind ar present but will be aware.

[Frodo]

@chris193 I have a lot to get off my chest about this!

I believe this is known to medical staff as 'Cyberchondria'. It may be true that some people might read information from questionable sources and develop undue "health anxiety" and waste the doctor's time. But unfortunately the word can be used to belittle and silence patients who have legitimate concerns/questions.

Why would anyone bother spending hours on the internet trying to reach a diagnosis or find relevant information about a condition? Because the doctor has not managed to do so (lack of time and resources) or has refused to do so, or has not communicated properly. Eg I was told by a GP that asking for a diagnosis was "asking too much".

One GP told me I had had "all the tests". When I discovered from NHS online information that there were different categories of tests, she checked my notes and said I had only had the first-line tests. She was angry I had found out about the different kinds of tests, and questioned her, and accused me of "reading" as if it was not something I should do.

I asked about a specific test for a condition I had researched thoroughly, including joining a group on HU. The well informed members told me this was a test I should have. I was even able via the group to ask the senior consultant in the field about it and his response was that someone with my symptoms should definitely be tested. But the response of the GP to the question: have I had this test? was rage. She accused me of "making up symptoms of illnesses you have read about on the internet" and told me I was only suffering from stress. I felt I had to change surgeries after this.

The other issue is that doctors don't have time, or sometimes the inclination, to read the information you are asking them about. I asked about a referral to a specialist NHS clinic. The GP repeatedly over several appointments told me they had not had time to read about this clinic although they had its website on the computer screen in front of them in my presence. When a different GP in the practice finally referred me to the clinic, the first GP was angry at the outcome and asked: "Who IS this doctor?" although the (NHS) specialist doctor's credentials were clearly displayed on the internet and I had left printed information at the surgery (and by the way this is an outstanding surgery with great GPs - they did listen and treat a different condition following my own research).

I think this is an issue that does need to be addressed, as the way the govt. is taking the NHS is only going to exacerbate the problem.

[Gambit62 Administrator in reply to Frodo]

Hidden just to make you aware of Frodo's response as the attempt to mention you in the reply didn't quite work

Frodo - I had similar problems yesterday.

[Frodo in reply to Gambit62]

Thanks, yes, I was aware it hadn't worked but thought I'd post anyway!

[Cherylclaire Forum Support]

Hidden , you are more than welcome to use anything that I have said on here in posts etc (as long as I have not inadvertently made it obvious who I am talking about as I don't want to cause offence).

My own GP had tried to help me but felt a little overwhelmed when "functional B12 deficiency" was confirmed, but frequent injections (2 per week) failed to get rid of any symptoms entirely. She contacted a haematologist for advice, and passed me over to her care.

I have seen 2 haematologists now. One of them believes B12 to be highly addictive. The other believes it to be toxic. One can only imagine what they advised my GP regarding treatment!

The one who believes B12 to be toxic was not interested in a research paper that I showed her (there really isn't that much out there about functional B12 deficiency) because it was dated 2009 ( the Talbot and Turner paper). This is a real shame because Talbot and Turner suggest that improvement for those with this condition may be through frequent injection. My symptoms are worse now that I am having only 1 injection a month (although the haematologists are not even particularly comfortable with this frequency), and I feel as if I am now searching for research that does not yet exist......

I bring medical research to appointments as back-up, yet when I ask for evidence supporting their beliefs regarding toxicity/ addiction, this request is ignored. [ I have tried to find any mention of toxicity, and can only find evidence of B12 in use as an anti-toxin !]

I am still waiting for test results and more tests are likely. I have read that mildly raised MMA is most likely to be caused by B12 deficiency, but there are other causes. Small intestine bacterial overgrowth (SIBO) is next on their list. The bacteria like B12 apparently. Shame it is not toxic to them !

[fbirder]

I think this forum can provide a lot of useful material and for this panel. Although nowhere near as bad as some others, there is still a reasonable amount of total nonsense that is posted.

I have read on here recommendations for eating molasses and dangling special rocks about one's person - both as a way of fixing a B12 deficiency. Some believe that anybody with a serum B12 below 500 needs treatment with injections. Many believe that having a gene called MTHFR means they need B12 injections of a particular flavour.

As I say, this forum isn't as bad as many other places. I dread to think how many times any GP has had patients waving printouts about how gluten, or GMOs, is responsible for their conditions - thanks to total nonsense posted on clickbait websites that thrive on worried patients passing on their FUD.

Hidden It would be good if you could report back with recommendations on the sort of material GPs are likely to take notice of. One good thing about this forum is that there are many references to reputable sources that should be recognised as such - NICE, BCSH, BMJ and others.

[fbirder]

I'm going to have to remember the 'aliens stole our veggie B12' theory for the next time somebody posts similar nonsense claiming that it's the modern 'non-organic' farming practices that are responsible for it.

[Gambit62 Administrator]

Most members of this forum try to encourage users to look for good quality information - which would include specific references to specific studies and some discussion of how those studies relate to the conclusion. Not sure that it is always possible to identify where there has been a bias towards excluding studies that don't support the conclusion.

The difference between correlations and causal relations is also a factor. One thing that has come up on the forum in the past is studies showing a correlation between cancer and B12 treatement being used as a reason for witdrawing or refusing B12 injections. A correlation does exist but no causal mechanism has ever been established and it is actually quite probable that the causal link is the period of B12 deficiency before injections start. PA itself is linked to higher rates of gastric cancers just because of the nature of its effect on the gut.

One role GPs could usefully play is in making patients aware of what constitutes a good source of information as opposed to a bad source rather than just dismissing everything out of hand ...