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[janm]

I listened to a radio program yesterday. A doctor was saying how the internet has allowed many people to suddenly become experts on health issues such as the menopause.

She said that forums and blogs allow people to share information which may be helpful to others. However they also allow people to sound very knowledgable about a subject, using lots of technical terms etc., when in reality they are actually relaying things that they 'picked up from the internet'.

She said, people who are searching for relief will assume that if a person sounds knowledgable they must be a medical expert. She added that sharing personal experiences was not the problem, but giving medical advice was dangerous, especially when a belligerent patient argues about a diagnosis, based on something they were told on a forum.

Her final advice was to seek professional help for any health issue.

Certainly got me thinking.

[Joyce]

This forum is a support mechanism, but we'd all suggest seeking medical advice as every one of us is different. As far as non-medical stuff goes we may suggest things which may help like a particular moisturiser or similar.

[janm]

I agree, Cubagirl, there have been some really useful things I've found out from here which have helped greatly.

It does make you think twice, though. I can see what the doctor was saying because it's easy to think that someone using technical terms may be medically qualified, when in fact they are not.

[tiger74]

I think the internet can be a good tool for empowering patients and arming them with information with which to have a discussion with a qualified professional. However, I have certainly seen posts on this forum which, in my opinion, attempt to give medical, pharmacological and veterinary advice, even diagnosis.  Sometimes people try to qualify this by writing things like "I used to work in a hospital", "my husband is a pharmacist" or similar.

Obviously it's up to people whether they believe and act on what is written on forums - if they prefer to believe stuff written on-line rather than  consult a professional that's their choice.  What scares me is that I suspect that some people, who may be feeling vulnerable and/or anxious may take advice direct from this forum and other internet sources rather than going to see a suitably qualified professional.   

Stay safe on-line, people.  Something that is taught in schools and we'd do well to remember.
 

[Machair]

I think it is absolutely vital not to take advice from forums especially with regard to medical symptoms. I am a qualified nurse and I know that every person who comes on here, myself included, is looking for the friendship of others going through similar experiences. It is through this communication that we gain comfort, but it should never be a substitute for seeking medical advice.

I think it is important though to use any knowledge we can to empower ourselves, and not to be allowed to be taken in directions we may not want to. I have a lot of respect for medics but they have large case loads, and sometimes we are able to act as informed patients. That is not to say we should march into a surgery with demands but to ask intelligent questions based on research.

[Dancinggirl]

Hi janm
I do agree about much of what you heard from this radio interview. The knowledge I have gained from this site has really empowered me.  In the past I have used good research to enable me to support and help my son who has special needs - I had one doctor, who was examining my son, actually ask me if I was a doctor as I was using all the appropriate terms and asking very searching questions - I needed this knowledge to enable me to get the appropriate help and education for him.  If I had trusted the local education authority and some of the, frankly, ignorant doctors I encountered, I don't know where he would be now.
I have often given advice on MM based on my own experience which may sound very knowledgable and I do quote stuff from this site that I believe is relevant but I know I have to be careful. Sadly we hear so many horror stories about inappropriate advice given to women by their GPs which is seriously scary.
My sister is a nurse and is extremely dismissive of anything on the internet - she says she dreads seeing a patient who quotes stuff from the internet as she believes it is dangerous!!! Personally I find the NHS site somewhat misleading at times.
I do think there is a danger of offering inappropriate advice that can sound professional and, of course, seeing a doctor is crucial as they should take a thorough history etc, before prescribing or offering advice - with very short appointment times this can be difficult. However, many of us need to see our GPs with some good background knowledge so we can question their advice, ask relevant questions and actually emerge from an appointment with what you need - this is particularly true when it comes to treatment for the meno.
DG x

[janm]

Great comments, tiger74. I agree with everything you say.

Dancinggirl, I've also had my share of excellent and incompetent doctors over the years. However, they are generally accountable for their actions if something goes wrong, whereas, 'caterpillar lover from xyz forum' has no accountability for any dodgy medical advice they give, if you know what I mean  .

Machair, I like what you say about empowering ourselves to ask intelligent questions. 

[CLKD]

However, not all Doctors are 'safe'. 

In the Fens a few years ago a GP from Germany with very little English language skills gave a patient an over-dose - he is banned from practicing in the UK but is still working as a Doctor in Germany.  Plus the Consultant who was taking pornographic photographs of his patients using a pen as he was 'writing notes'.

It is always worth seeking advice from the GP/Practice Nurse.  However, so many GPs are dismissive of symptoms from birth upwards, that having Forums to seek advice from is becoming essential.  No longer is the medical profession seen as 'gods' …….. and we have to remember that technology is moving so fast that GPs are having difficulty 'keeping up'  ……. and I have no problem sharing what I am told by other knowledgeable people, i.e. DH who is a research chemist ……..

It is entirely up to each individual what advice they do: not : take …….

[Ju Ju]

I think the support given on this forum is invaluable. Sometimes it helps to air health concerns, particularly when you feel you are making a fuss or are embarrassed. It helps to share and to feel more confident to seek medical help. Contributors regularly encourage others to seek medical help if appropriate. Googling symptoms can be dodgy, but once you have a diagnosis, you can do some research to get a better understanding, but you need to use common sense which sites to visit.

[Hurdity]

Not suite sure about what the doc is trying to say?

Of course doctors need to provide medical diagnoses, but I don't think anyone on here attempts to do that? Most members giving advice suggest a visit to the doctors if there is any concern beyond looking at the information available.

The fact is, information on this site (ie menu on the left), and current scientific and medical literature enables some people to become fairly knowlegdeable about the subject and to act almost as interpreter or signpost women to the appropriate place. As far as I'm concerned this is absolutely fine provided that references are given (ie the link) so that members can read the information for themselves.

That is not to say that all sites and forums can be treated with the same confidence. There is a lot of misinformation out these and lots of websites that give a pseudo-scientific explanations

Also there is a world of difference between giving a medical diagnisos and provided information. For example saying to a women with a uterus who has been prescribed oestrogen only HRT: "Your doctor has given you the wrong prescription because you need a progestogen as well to protect your womb" is providing knowledgeable information - which can be backed up by the menu on the left.

Saying to a woman complaining of palpitations "It's a peri-menopausal symptom so you are entering the menopausal years. You don't need to worry" is a diagnosis and recommendation based on information - but one that actually only a doctor should make ie the "don't worry".

As far as I know there are no medical doctors or gynaecologists posting on this site - however some members have biology degrees and higher science research degrees, and are therefore able at least to provide information that has been found, and to distinguish good from bad science intelligently. Some of us (like me) use technical terms because we understand them but hopefully in a way that is comprehensible to the non-scientist. I see no purpose in using technical terms without explanation as this is unhelpful.

Tiger74 - you express concern about posters on this forum giving medical and pharmacological advice (even diagnosis) - I am interested to know what sort of posts you are concerned about? janm - I can't imagine anyone taking medical advice from a caterpillar lover on a random forum though 

We all give an opinion based on our knowledge and experience but none of this is a substitute for a visit to the doctor at some point!

Hurdity x

[peegeetip]

It would be good to see if there is a replay of the program being mentioned Janm?

Perhaps if some of our doctors read the information on this site they'd be a lot more aware.
They might start to understand the range of concerns, conditions and symptoms we all suffer from.
They'd also have a better knowledge of the range of options our there for us all.

In my own case my doc pushed me off to this site and forum in the first place!!!
So this radio doc now says we should not rely on these sites??

My own doc advised one thing then when the MM forum and information tabs on the left contradicted her "knowledge" she got annoyed about it (tridestra is not for peri use I was told when I asked for that HRT with a cycle every 3 months).
I was grudgingly put onto a normal sequi option with a monthly cycle instead for my cheek

If there was consistency on how doctors treat us all on our peri and meno journeys that might help too.

Even if all doctors knew and understood the current BMS guidelines then that would be a "HUGE" start  http://www.medicalnewstoday.com/articles/181726.php

Perhaps the doctor is suffering from loss of their power over her patients.
For a long time doctors were never questioned and held upon high.
The information they had was often difficult to find outwith their medical field and expensive journals.

Now we have forums that provide up to date, valid and useful information (backed up by Dr Currie and Emma in MM).

Sounds like sour grapes from a doctor who struggles to take on board the need for patients to understand more about their conditions and be aware of whats available for them, even if there is sometimes a gap in the doctors knowledge on the subject.

Please remember that we are dealing with General Practitioners and the clue is in the name. They are generalist not specialist. I've read a few articles that in certain subjects GP's are not taught to a detailed level.
Care of peri/meno is one of that areas they are trying to improve.
If doctors feel that they don't know a subject well enough to deal with a patients symptoms or problem (without guessing) then they should refer us to a specialist. Problem solved.
Then we would have to rely less on getting the information ourselves as have a lot of the ladies on the forum.

If a group of ladies on the forum get on well with a particular HRT Great!
Then we go into our next appointment with another option if we are not in the best place.
To then have a doctor question that choice and try and force their own will on a patient is not really the best result for either.

Lets hope this doesn't put off more ladies who are unsure whether to get involved in the forum.
We all gain valuable understanding and feel we are not alone with our problems and feelings.
Lets continue to speak out, reach out and point out as best we can whilst dealing with difficult times  and hope that by sharing we can help others.

 

[CLKD]

   Hurdity and Peegeetip 

Knowledge is power.

[tiger74]

janm - thank you for your comment.  I did hesitate for some while before posting as I didn't want to sound too outspoken or upset anyone.  I read a lot on here about anxiety and didn't want to add to this by being overly critical of a forum which I realise gives a lot of people a lot of support.  You also make a very good point about professionals being accountable whereas people who post on forums are not.

CKLD - I agree, the medical profession are not seen as 'gods' by many people -  I was brought up by parents who thought they were but I've never believed it.  Like all walks of life, medicine has its fair share of idiots.  Doctors have one chance with me,  I do my research from bona fide sources and if the doctor I see is an idiot (as regards knowledge or communication skills) I go and see another doctor - thankfully this doesn't happen often.
     
Hurdity - for reasons explained above (around the prevalence of discussions about anxiety on this forum) I am not going to quote directly.  I would prefer not to upset anyone and, as I said earlier in this thread, if people want to take medical advice off an internet forum that's their choice.  However, you asked to what sort of posts I refer... I didn't have to look far down the "Other Health Discussion" to find some examples.  As an example, there is one post which told someone to discontinue taking specified medication before a particular medical test was carried out.  This was with no reference whatsoever.  This wasn't even couched in terms of "when I had XYZ test I was told to stop taking XYZ medication".  This type of advice could at best be good sound advice, at worst it could kill someone. I know this sounds dramatic but I don't personally know any of the people who post on here - maybe it was an evil internet psychopath who posted that advice, maybe it was someone who has the appropriate, up-to-date qualifications - who knows? I don't.

I originally came on here asking for advice about hair-care.  I'm happy to accept advice about products and techniques in this type of area.  As I said before, if others are happy to take advice from here about prescription-only medication or medical issues that's up to them.

[CLKD]

Often patients with knowledge gained from Forums can help GPs as it lessens the time spent on appts. 

[Machair]

Something else occurred to me today about this thread. My daughter is a vet and is very against clients looking up stuff online and then walking into the surgery with an attitude that says " I know more than you" I see her point, she studied for 5 years took many exams, and continues to undertake professional training to keep her skills at the best they can be. She does however respect the informed client that asks intelligent questions, feeling they have gone that extra mile to find information and to use it appropriately.

 She also has experience now- so say for example an animal comes in with certain symptoms she knows from seeing others in the past what the likely outcome will be. This is very different to reading general advice online. In her early days of being a vet she would often have to ask for advice as experience was lacking. She had the knowledge gained from books and lectures not the years in the job behind her. Now we are not  the cows or sheep that she deals with, but the point is the same. Two ladies with unusual bleeding patterns that post on here may sound similar- one may be genuine peri craziness, one may be uterine cancer- there have been two ladies here I know that have had this diagnosis rather unexpectedly since I joined three years ago. We can say "yes I have had that symptom" but we can't advise what to do about it - this is dangerous and must be left to the individual and her doctors.

What this forum should be for is the wonderful warmth we get from supporting each other emotionally and this is exactly what it is. This is why I am so grateful to everyone for all their help. We can share symptoms and know we are not alone and that is priceless. We can inform ourselves and ask intelligent questions of our doctors - this is empowering. What we can never do is diagnose, this is for the medical profession.