to think that professionals feel undermined by people using the Internet to find answers?

[LapsedTwentysomething]

I've spent a lot of time online recently, researching treatments for a specific cancer (not mine). Post-diagnosis I'm able to use the information I have on type, grade, stage and mets to scope out the next stage of treatment. In fact, we were aware well before the consultant realised (at the prescription writing stage) that the next phase of treatment wasn't going to be available geographically. I know for a fact that it is now available but having chased the professionals on this for the last six weeks, not even the consultant is aware of this.

Other HCPs tell me that I need to be aware that all cancers vary at cellular level and this particular treatment may not be appropriate, whereas I'm well aware that it is - having been recommended the treatment by the consultant.

I feel that HCPs in particular have a tendency to roll their eyes at what they see as armchair medics hysterically Googling their symptoms. In another instance though I took some legal advice and was simply provided with information I'd already found for myself.

AIBU to think that some professionals need to recognise that the general public is savvy enough to judge for themselves the reliability of information they find online - a skill taught from an early age now - and need to stop patronising those of us who do so by dismissing or eye rolling when presented with info that they themselves were not already aware of?

I'm not in any way suggesting that we should all be self-diagnosing or representing, but that actually the Internet is a priceless tool in disseminating information for everyone.

I find this really interesting as it affects me at the moment.

My DD was recently born with a congenital deformity that no one could give us a name for in the hospital. We were given a referral to a plastic surgeon but we're still waiting for an initial consultation.

When we got home from the hospital I started looking on the internet and found the name for DD's condition, reconstructive surgery options and alarmingly the fact that around 80% of people born with this condition also have associated health problems that should be screened for.

So far all the hcp's we've spoken to about DD condition have to me to stop googling because I'm obviously just upsetting myself.

Everything I've read online has been referenced and so far I've got my hands on a couple of of journal articles and extracts from textbooks to physically take with me to the GP as they won't listen to me. I'm hopping the resources I've gathered will at least be read.

I've also been helped by other parents who's children have DD's condition. I found them online too.

I have suffered from two major conditions in my life, both of which I 'diagnosed' myself. In one case, the diagnosis took a third of the time that it usually does on the NHS because I knew what to push for. In the other case, the doctors didn't know such a condition existed and had to be persuaded - eventually - with research articles. That was a fairly clear-cut instance of GPs who were convinced they were too busy to spend a quarter of an hour on research.

I don't trust the NHS, particularly our local GPs' habit of assuming that a symptom will always be connected to the most common ailment associated with it unless the patient returns on a weekly basis for an indefinite period of time (whereupon they seem to decide it's probably psychological). 'If you hear rain outside the window,' one of them told me regularly, 'it's probably not a storm of locusts.' I eventually paid for a private referral in order for a consultant to inform him that it was a bloody storm of locusts. If I hadn't researched, I don't want to think about how differently that would have gone. I'm perfectly capable of getting the general gist from a few abstracts.

On the whole, private research is helpful but it needs to be held lightly. If a specialist truly is a specialist, they can show you in the first five minutes if you've been barking up the wrong tree - which may be the case.

People might be interested to read the Expert Patients Programme, which is the NHS acknowledging patient knowledge and helping them to develop this to benefit their own health.

www.nhs.uk/NHSEngland/AboutNHSservices/doctors/Pages/expert-patients-programme.aspx

I do think some hcps have a big problem with patients who google. A friend (gp) of mine deliberately chose a practice in a deprived area to aviod over informed patients - I was her idea of hell. Consultants are often much better with informed patients.
While patients may get their diagnosis wrong, i could say the same for the doctors I've visited, unfortunately.

And without doing my own research i would not have found a treatment for an autoimmune condition i have. Interestingly someone did an online questionaire on a facebook group for the condition and the lack of knowledge from hcps was truly shocking. People had to print information out and take it to a&e or their gp because they were met with so much ignorance.

Is it ignorance though?

Medicine and everything that accompanies it is absolutely enormous. This is why we have specialists.

I do think health professionals need to take into account the availability of information, I do.not think the average internet user is able to judge the reliability and validity of the information they find on any specific topic and form an opinion that is at the same level as a professional in that area.

Well it was ignorance because they had not heard of the condition yet refused to listen to the patient with the condition because they were the so called expert and the patient was just a nobody.
I just had an issue with a non healing wound - the nurse came out with all sort of nonsense that i knew not to be true from a previous occasions with a non healing wound and a more informed nurse and a few googles, it's quite tedious when hcps do not update their skills and knowledge yet are so bloody minded and insecure, that they refuse to question an old concept. Someone who trained 30 years ago but refuses to carry on learning is a liability.

I do understand where Dr's are coming from though.

How long to become a Dr? 5 years school? 2/3 years foundation? then you're a Dr? Most (think 50%) become GP's and all that time dealing with the general public must lower your opinion of their ability to understand even basic medical science.

I remember telling my GP about my concerns regarding DS's constipation after weaning. I though he was in a huge amount of pain and had a bowl disorder. My Gp said "well think about it, solid is going in so solid will come out and solid is thicker than milk"

I remember thinking "is this woman explaining shit to me?" and being angry as she wasn't taking my concerns seriously but maybe she had just underestimated how much I knew about poo formation because she'd dealt with so many people before who'd display even less understanding especially regarding their own bodies?

If you're not being listened to then that is an issue, but it's not ignorant to not be up to date with everything in healthcare and medicine.

And someone who 'trained 30 years ago' does have to keep carry on learning, being a HCP means you're obligated to do so but like I've said this area is vast and no-one, no-one not even the experts, will be completely up to date.

And I actually do understand that sense of insecurity. Imagine your expected scope being so vast that what you're taught can be changed month by month. I imagine if a customer came into your work and told you X an Y even though you'd be taught differently, it would make you feel insecure. That isn't to say they should treat you badly, that insecurity should be quashed. But when you've been taught something and then suddenly are accused of 'coming out with nonsense' it's not good.

I think that there is an issue with HCP's not listening, but when you've had so many patients tell you how to do your job or keep insisting on treatments and procedures that just aren't relevant it can be extremely exhausting. For every 20 people who claim to be informed after doing 'research' I would say maybe 1 is actually on to something.

That isn't to say patients shouldn't be informed, we WANT you to be informed. We fully support the Expert Patients, and we support people making suggestions based on what you've thoroughly researched. But handing me a print out from WebMD doesn't fill me with hope.

There needs to be a middle ground, and I also support fully research techniques being taught in high schools. This ever growing age of digital information can be so useful but also dangerous; people need to be taught how to utilise it appropriately.

I recently found out that evidence says we should't be telling women to check their breasts for lumps. This is the most recent evidence, and is available online. Now the NHS hasn't mentioned this in my trust. So there's been no further education on the matter. So can you see where these disparities can arise?

I think it's fine to research on google, but it's also important to be aware of the extent of your own ignorance - and that google results aren't a substitute for professional education and experience.

If you're not being listened to then that is an issue, but it's not ignorant to not be up to date with everything in healthcare and medicine
The lack of knowledge I was describing is not very recent - its at keast 10 years old. Ignorance is lack of knowledge - you can't know everything but there are many hcps who try to pretend they do, this infuriates me - I feel more comfortable with someone who can honestly answer "i dont know" but they are a rare breed.
It's not a competition of egos and knowledge - it should be a diologue intended to uncover and treat a problem. But old style medicine does not support the model where the patient's input counts.
My chest consultant said they learned that patients often have a sense of whats wrong with them and to ignore a patient's thoughts whether googled or not, on their condition was a stupid and sometimes deadly approach to take.

I am a vet, and I have no problem with owners googling. If they tell me what they think and I know it to be incorrect, I can explain why, no harm done. I often encourage them to use the internet to find out more about their animal's condition and then discuss me their findings

More times than not they have gotten themselves into a panic thinking there was something serious wrong, and I can reassure them. But I don't ever dismiss their worries/ findings, and I don't feel undermined (am very patient person!)

I chose my vet on his ability to patiently explain my dog's condition and my options for treatment with pros and cons. Vet does not make the decision - i do with their expertise at hand - i strive to have the same experience with my gp but i rarely encounter it.

A few years ago, I Google-diagnosed myself with something awful and degenerative. If I had been correct, I would either have been either severely incapacitated or dead by now. I checked my symptoms out with my GP, who diagnosed my symptoms were caused by stress. After finding out I didn't have horrible, degenerative disease, my stress levels decreased. I sorted out a few other things over time, and now none of my symptoms bother me. I'm now completely fit and well (apart from being quite overweight).

And I work in the NHS so should have known better

Anyone can post anything on the internet and sadly people will latch onto something which offers hope. I'm caring for a lady at the moment who is refusing conventional treatment but following a -bonkers-- diet off the internet. Her latest scan showed, unsurprisingly, that her disease has progressed too far for any treatment to be effective. She has just weeks left and will leave behind a very young family. People who post this sort of shite on line should face criminal proceedings, imo. Sounds drastic I know, but I've seen too many lives lost early because of 'advice' from the internet.

I meant to say that as a diagnostic tool, Dr Google is crap.

Yet it was a diet that allowed me to deal with my condition, my dermo accepted the diet i suggested often worked but she didn't suggest it because so many patients were incapable of sticking to it. I object to being given second rate advice because someone judges me of being incapable of self control. Again thank fuck for google!

I'm a hcp. I deal with people with a long term condition. The more informed and the more engaged they are the better the outcome for them. However that comes with the caveat that everyone is individual so there cannot be dogmatism on either side. What is suitable for one may be dire for another despite nice recommendations. (I have the patients to prove this unfortunately)

I have had very well educated people tell me what they know about anatomy and pathophysiology and they have significantly misunderstood what is going on. So, no, I don't assume anything. To do so would be negligent to the patient. How can they self manage without a good understanding?

Then There are others who are horrified to be told anything-which is far more of a nightmare.

Yanbu to think we should be encouraging more knowledge.
But the majority of people? Oh I wish..(may have worked in deprived areas too long)

With respect, Loafliner it doesn't sound like your condition was life threatening (correct me if I'm wrong). I'm glad that your condition has been helped by diet.
However. I stand by my comments about false advice being given on line that claims to cure cancer. It's just cruel and immoral imo.

You're right punk not usually life theatening but sometimes there have been deaths, somtimes the condition has led to septicemia or more commonly though lack of treatment and diagnosis - suicide - lack of knowledge of hcps has certainly not helped.
Ime gps know little - i live in hope of being corrected in an inclusive manner.

Greys Could I ask you to explain why the latest advice is not to check your breasts for lumps? I'd be very interested to know the thinking behind this! Thanks.

saturn Off the top of my head, there was a study of 400,000 women (Published in the British Medical Journal), and it was found that breast self-examination doesn't reduce breast cancer mortality and might cause harm through unnecessary biopsies. The American Cancer Society no longer recommends breast self checking. So has Canada, and a few others if I remember rightly.

I never heard of this until a colleague of mine from abroad brought it up.

I totally agree.
My dh has what is known in this country as a rare condition. It isn't so rare in Australia and America and there have been very positive results from people using natural remedies.
When dh mentioned it his gp he shouted at him about quack treatment.
The gp didn't like it as he couldn't prescribe drugs as they don't work for dh.
The amount of antibiotics he has been prescribed over the years is ridiculous and only once were they necessary.
The gp had to look the condition up as he had never heard of it and asked dh to bring him in the info he had researched.
The worst thing was the gp lanced and treated with hot compresses which is the worst thing you can do with this condition.

Thanks Grays