Page last updated at 16:49 GMT, Wednesday, 24 February 2010

Scrubbing Up: Self-diagnosis

Elderly patient using the internet

As the internet becomes more and more easily accessible it is perhaps inevitable that patients should try to self-diagnose.

In this week's health opinion column Scrubbing Up, medical law expert Dr Anthea Martin warns doctors against dismissing all web-wise patients as 'cyberchondriacs'.


Email sent in by reader

It would be quite refreshing for more of my patients to do some research before coming to see me particularly if it was for minor illness such as the common cold. I practice in an inner city practice with a large ethnic population who have the health belief of "a pill for every ill". It would save me a lot of time explaining why antibiotics are inappropriate.

Whilst there is an array of information on the internet and some downright bizarre self diagnosis sites, a lot of the information is actually factually correct. I usually signpost such patients to the right and more importantly appropriate websites for UK medical practice and explain the available options in the NHS and private sectors to get a more patient centred and mutually satisfying consultation.

Expert patients.....I wish I had some more.
Name withheld, Birmingham

Email sent in by reader

I have done this once. The internet allows me to seek a second opinion, and most times the second opinion falls in line with doctor's advice. But there was one time when I thought a treatment could be optimised by having a better dosage. I presented a peer reviewed abstract which the doctor acknowledged and agreed with, which had done wonders. If you have an open minded doctor and state your case coherently, and are willing to be disputed, then it is a positive experience for you and them.

I have heard from doctors once or twice before to look up on the web the definition of the diagnosis they present and see if I agree with it. I don't think doctors should feel intimidated but be happy that people are willing to be responsible for their own health. They just need to discern if their patient isn't someone who's often wildly off the mark about themselves.

And, I think most agree that we do value doctors and the internet will never replace them.
Mo, London

Email sent in by reader

My GP told me of a medical article (which I read) that found that patients who did their own research got better faster. She encouraged me to do my own research about my daughter's condition (Juvenile Idiopathic Arthritis), which allowed me to understand it better, and discuss treatment options with consultants more effectively. My daughter was treated with inter-articular cortisone more quickly, and was able to walk again more quickly as a direct result.

Obviously you have to read "real stuff", not a random person saying "I ate carrots and got better", but yes, do your research. It makes it much easier to follow what the doctors are saying, and you may be able to make helpful suggestions.
Tim, Kingston

Email sent in by reader

After an episode of bad pins and needles, I browsed the net, and stumbled across multiple sclerosis. I then discovered I had numerous symptoms of this disease, and therefore spent months reading up on it on the internet. Meanwhile, I'd had an MRI scan, and had to wait weeks for the results. In this time I was convinced I had MS. My parents said I was a 'cyberchondriac', even telling their doctor. Meanwhile, when I explained my thoughts to my own GP, he actually rolled his eyes, which made me feel like I was being utterly stupid. Three weeks ago my neurologist told me I have MS. I'm extremely glad I researched it on the net, as I was prepared for the diagnosis, and already know the ins and outs of the disease. Maybe GPs ought to spend a bit of time researching on the net. Especially out of touch ones like mine!
Emma, Birmingham

Email sent in by reader

Last summer I had a small scratch just above my right ankle that first went septic, then developed into a small ulcer. I saw a health centre doctor, who passed me to a clinic. My leg was bandaged very tightly for about a month, and the ulcer deteriorated, increasing roughly four-fold. I looked up everything I could about ulcers, and found material suggesting that I was being treated incorrectly. I remonstrated with the clinic, which changed tight bandaging to compression hose, and the ulcer very slowly recovered, though it is still not fully healed after five months. The clinic took the view that my age - I am 73 - caused the deterioration and hampered recovery. I think the treatment may have played a significant part. Whilst was throughout treated with great care, I am not sure that health service employees always know best.
Nicolas, Slough

Email sent in by reader

I've found that this can work well the other way round. On going to the doctors with knee pain and being diagnosed with a common joint problem, my doctor offered to email me some reputable information and articles to read up on the problem before attending physiotherapy. This led me to feel far better informed than I could possibly have done following a 10 minute consultation. Doctors should not fear the internet, but should endeavour to use it to their and the patients advantage.
C, Exeter

Google internet search

Email sent in by reader

GPs should recognise the autonomy of the individual patient and not dismiss their conclusions out of hand, but take them into consideration when giving their own medical opinion. Looking up stuff on the internet will rarely be a good substitute for a thorough examination by your GP - not least in part due to the vast swathes of spurious information people can find on there. Having said that, there is some value in taking an interest in your health - the internet facilitates this.
Distilledwill, Leicester

Email sent in by reader

I think this study is quite interesting, and shows that greater communications between doctor and patient are essential to ensure the best treatment is possible.

With regard to internet research, we can be our own worst enemy sometimes, and our eyes will be drawn to the worst case scenario our symptoms point to. This would lead to panic, fear and perhaps a dread of visiting a doctor who could only 'confirm the worst'. A GP would be able to offer a more balanced view, taking into account the patient's personal circumstances and probably draw a more sensible conclusion that can be successfully managed.

On the other hand, I have personally done in my own internet research to find a solution to a shoulder problem that was incorrectly diagnosed for several years. Armed with my new information, I was able to direct my GP towards the correct way forward, and subsequently my shoulder is finally on the road to recovery!
Victoria, Oxford

Email sent in by reader

After four and half years under specialist care, without a diagnosis and the doctors telling me it was all in my head, through Internet research I was able to find out what it was and was able to push the consultants to do a test which confirmed what I found online.
Lollo, London

Email sent in by reader

I recently walked into my GP's surgery with questions from a conversation with an American family physician and information from mainstream US medical journal sites about a condition I have. They'd all said that the cause of my condition is unknown, but that it's often very helpful to be sent to a specialist for testing of endocrine function. My GP asked if I'd been surfing for the information, and as I was telling her which ones I'd looked at to get ANY information because I'd been given a diagnosis and no information from my previous GP, she began talking over me and told me not to bother with "internet speculation". On the other hand, two of the GPs in the same surgery have actively encouraged me to seek information from reputable sources and been interested in the results of my searches. Interestingly, they're also likely to admit when they don't have answers for me and are more likely to commit to reading up on the subject and discussing their conclusions on my next appointment. This is clearly an issue of social skills, confidence, and core beliefs about the patient-doctor relationship.

Email sent in by reader

I recently broke my ankle (spiral fracture of fibula) and was given minimal/inadequate advice and consultation by hospital/GP (seven weeks between appointments and only five minutes at each of these, told physio not necessary as not bad enough etc). Almost all the advice I got about exercise, rehabilitation and pain relief came from the internet. I'd have struggled without it.
Helen, London

Email sent in by reader

We must not forget the other side of the picture too though. What about all those patients who turn to the internet to self-diagnose, realise that their symptoms can be treated at home with simple over-the-counter medications and therefore decide not to waste value GP time with a trip to the surgery? I have been in this situation myself. Sometimes people are looking for reassurance that the way they are feeling is normal and that they will get well in due course. If they can find this online, and not feel the need to visit their GP, then that's more for GPs to spend with patients with more pressing problems.
Alison, Cambridge

Hands on a keyboard

Email sent in by reader

A few years ago I visited my GP worried that I may have endometriosis. I had experienced troubling symptoms for some time, and every time I put them into a search engine, endometriosis was the result. It was the only thing that matched all my symptoms, and though I didn't have every one listed, from all the descriptions I read it sounded very likely. When I told him my concerns he dismissed it as "cyberchondria" and after a quick check told me to "eat more bran". I left the surgery happy and reassured, glad that I had been wrong. However, a couple of years later, after trying unsuccessfully to conceive for a year, I was diagnosed as having stage four (advanced) endometriosis, and required IVF treatment.

This wasn't the only doctor who missed diagnosing my condition, but he was the only one to openly be so dismissive of the research I had carried out on the internet. Not only was my condition missed several times by GPs despite the symptoms clearly matching those listed on some websites, it progressed to a stage where fertility treatment was required. Also, I spent a long time thinking there was nothing really wrong with me and just putting up with the pain and discomfort as I didn't know what was causing it or how to treat it.

I understand that GPs have a difficult job to do, and they can't be experts in everything and have to cover a huge range of possible problems, so I would have thought that well informed patients could actually be a help to them. Obviously a patient isn't going to be correct in their potential diagnoses all the time, but I think its wrong of GPs to automatically dismiss patients concerns and theories without considering them.
Gillian, East Kilbride, Scotland

Email sent in by reader

When I described to my GP how I had researched the possible diagnoses that fit the symptoms I was experiencing, she seemed interested and actually asked what I found, and what I believed to be the most likely. This felt the most helpful and genuine response. I know that if she had chuckled or dismissed me out of hand I'd have felt belittled, naive, and left confused.
Paul, Sheffield, South Yorkshire

Email sent in by reader

Patients and doctors can work together, as long as both sides are open-minded to it and listen to each other. If you have some idea what might be wrong, either book a longer appointment or, if it's not urgent, e-mail/write to your GP with your concerns. I was in a similar situation when my (now) late husband was ill. In the last few months of his life I noticed changes in his behaviour, mood and body odour, which a doctor would have been unable to pick, unless they knew him really well. It took me several days of internet search to figure out that he might have developed hepatic encephalopathy. I wrote to his GP, explaining his symptoms but stopping short of a diagnosis and asked her if she could see him. She immediately made an appointment and confirmed what I suspected, which meant his medication was changed. Ultimately, this didn't help him, but that wasn't for lack of care or attention from his doctor.
I McCartney, Ely

Email sent in by reader

Being a life sciences (not medicine) graduate, I have fought a life-long battle to be treated as a knowledgeable partner by GPs rather as a moron to be told what to do - and I'm all for anything that will help patients to become more informed about their bodies, how they work and what can go wrong. Having now changed career, virtually ALL medics find it hard to understand that I am as professionally-qualified (if not better) in my field as they are in theirs... I cherish my current well-trained GP who understands this and talks to me as one professional to another!
Megan, Cheshire

Email sent in by reader

Doctors have to see this as an opportunity rather than a problem. There are plenty of people who want to check whether their symptoms represent something that might need professional attention or just an aspirin, before they foist themselves on an overburdened medical system. NHS Direct is one attempt to do this, although in a slightly paternalistic fashion that either sends you away none the wiser or tells you to call 999. No doubt there are difficult cases of real cyberchondria, but I'm sure they are the exception. Most people who turn to the internet do so because of the difficulty of getting an appointment to see a doctor, then of the very limited time to work out what's wrong with them before they are sent out the door clutching a prescription. It's time to use the energy and motivation of those people to advantage instead of patting them on the head and giving them another dose of Prozac.
Ian, Stockport

Email sent in by reader

Your article dismisses completely web informed patients. I have found that the medication I was receiving was only 50% efficient using the web and my doctor was not aware. Actually she wasn't aware that she should have used two antibiotics to kill and then wash out the "exotic" bug I got abroad. She used my web information and changed my prescription.
John, London

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