BMJ editorial: Let the patient revolution begin

[Clutter]

Intelligent editorial advocating patient involvement in clinical decisions. Extract:

Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients (although it is important to note who sponsors them).9 They also provide a rich and as yet largely untapped learning resource for health professionals. Examples include healthunlocked.com, healthtalkonline, rawarrior.com, and cancergrace.org (bmj.com/podcast/2013/04/29/.... There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers.

The full article is in bmj.com/content/346/bmj.f2614

There is a wonderful example of the value of patient driven online support networks in this link bmj.com/content/346/bmj.f19...

[Fruitandnutcase]

"There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers."

Too right! Please, please, please let medics read this article and learn.

[Clutter in reply to Fruitandnutcase]

F&N, it's worth reading the full article in the link.

[Fruitandnutcase in reply to Clutter]

Yes, had a quick look through it - you have to wonder about George Bernard Shaw 100 years ago lambasting doctors and saying pretty much the same as so many of us are still saying. Just noticed its dated 2013.

[humanbean]

I find it strange that there exists, at one and the same time, doctors who want to engage patients in their own healthcare, while the vast majority of them assume that the bulk of patients are dimwitted liars and attention-seekers.

I can't remember where I read it, but recently I read about a young doctor who was baffled by her patients' reactions to test results. This young doctor assumed that patients would be delighted that their test results were normal. So when the patients looked depressed or angry she couldn't understand why. But from the patients' point of view it meant that symptoms would be dismissed and they would leave the surgery with no plans in place to find out the cause of the symptoms that took them to the doctor in the first place.

And of course, now that doctors have invented "somatic symptom disorder" - the new name for somatoform disorder - they have a new dustbin to put patients in. How many dustbins are available to them now? Let me think... Fibromyalgia. Chronic Fatigue Syndrome. Irritable Bowel Syndrome. Somatic Symptom Disorder. Depression. Stress. Anxiety. Getting older. I'm sure there are others.

[humanbean in reply to humanbean]

I should also add, the beliefs of the authors of the article could not be any more different from those doctors who tell people not to use the internet!

[Clutter in reply to humanbean]

HB, I hope most doctors don't think the majority of their patients are AS, dim or liars even if they're unable to diagnose a reason for symptoms.

Doctors theoretical knowledge of conditions and treatments doesn't equip them to know how conditions/therapies *feel* and that's why I think patient experience and support is invaluable.

I posted recently about a Twitter conversation I had with the doctor who didn't understand why patients weren't delighted at normal results.

[humanbean in reply to Clutter]

Ah! You were the source of the young doctor story! I'd forgotten that.

Regarding how doctors view their patients, perhaps the problem is just with me then. In my experience with doctors and the NHS the first hurdle I have to get over is convincing a doctor I am telling the truth. In the case of my endometriosis that took 12 years from the time I started seeking treatment. And even then nobody thought it was worth treating me for a further 2 years. The first attempt at treating me had no effect. So they waited a few months and tried the same treatment again, just in case it might work the second time (it didn't). And nobody ever took me seriously when I said I was in pain. I have several other stories of the same variety but with different conditions.

I realise I have a boulder-sized chip on my shoulder about the medical profession, by the way. *Sigh*

[Clutter in reply to humanbean]

HB, I don't blame anyone who has suffered poor care or a bad attitude from doctors for having a chip.

I had poor care from 2 family GPs, outright negligent care from one, but exemplary and life-saving care from the practice I moved to and am still with.

[HarryE in reply to humanbean]

I have also been treated as if I am a total idiot, and I work for the b)-@£& NHS!! So I'll join you with the chip .

And as for not using the internet, it saved my life. Not to mention the fact that all the medical journals publish online.

[Clutter in reply to HarryE]

Harry How're you doing now you're back on NDT?

[HarryE in reply to Clutter]

I'm absolutely fine thanks. Awful blip which I now think was due to cocking myself up totally by being persuaded to try Levo. Never again, NDT forever!! Just went up to 3 grains a couple of weeks ago.

[Clutter in reply to HarryE]

Harry, that's great. Long may it continue

[HarryE in reply to Clutter]

Indeed!

[Bluedragon in reply to humanbean]

HB, Menopausal could certainly be added to your list.

[humanbean in reply to Bluedragon]

I should have remembered that one, it's a classic!

[Bluedragon]

An interesting read Clutter. I wonder how many of our Drs read it. I suspect many would throw their hands up in horror. My surgery thinks patients shouldn't be allowed access to their own records, not even test results - because they are uninformed and might panic. Treating us like children. Bah.

[Clutter in reply to Bluedragon]

Bluedragon, the Data Protection Act overrides your surgery's paternalistic attitude and entitles patients to their results and records. By 2018 we should all be able to access our test results and GP records online.

[Bluedragon in reply to Clutter]

I look forward to the day Clutter. Perhaps that will be when they stop telling people their results are normal when they're not. I object to having to apply thro the data protection act and pay money - my current position to get a copy of test results. Openess and honesty should always be the starting position.

[Clutter in reply to Bluedragon]

Bluedragon, surgeries are allowed to charge a nominal £1/£2 to cover the cost of printer ink and paper but aren't allowed to use printing results as a revenue stream. I refused to pay £10 for one sheet of results and made an appointment to view my records online. A stupid waste of my time and the admin staff supervising me. Luckily GP agreed and printed off the results for me during an appointment.

[Bluedragon in reply to Clutter]

£5 or £10 if want to see more. I've refused to pay so far but can see that when haematologists results come through, I will want those as 5 phials worth! Perhaps I'll ask for several years of notes just to get my monies worth....

[Clutter in reply to Bluedragon]

Bluedragon, you can buy all your manual and electronic GP records since you joined the surgery for £50.

[Bluedragon in reply to Clutter]

That's very interesting to know. You are a mine of useful info! Unfortunately only been there 4 years. Thanks clutter.

[Clutter in reply to Bluedragon]

Bluedragon, or, ask to view your records online and photograph them with your phone or make notes.

[humanbean in reply to Bluedragon]

Last year I paid £50 to get copies of all the records held by my GP, including my summary care record (SCR). I was quite lucky compared to some. There were some (extremely limited) pieces of info going back about 45 years. As time went on the amount of info increased. But it wasn't until the late 90s onwards that I ended up with a fairly complete record.

[Clutter in reply to humanbean]

HB, the handwritten scrawls from my previous practice were hard to decipher, give the barest indication of why I attended and there is no prescribing history. The pre computer history from my current practice is quite detailed.

[Bluedragon in reply to Clutter]

Hmm, I wonder if my notes from London have followed me to the Midlands. All more money.... Sigh. This year seems to have been about private testing, supplem

ents and injections. All money.

[helvella in reply to Clutter]

Was supposed to start being implemented in April this year! Precious little of any significance has happened at my GP surgery...

[Clutter in reply to helvella]

Helvella, moved to a new system which means booking/cancelling appointments on line now available and repeat prescriptions which were available on the old system. No access to records yet.

[helvella in reply to Clutter]

Our new system theoretically allows appointment booking - but doesn't appear to work. Allows messages to be sent and received. But no-one ever responds. And prescription requests are no better than under the old system!