Pernicious Anaemia Society
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Cyberchondriacs!!!

Be prepared for the next onslaught from the medical profession after today's reports suggest cyberchondriacs cost the NHS millions. In the Times today the headline above states Negligence payout bill for NHS on course to hit £3.2bn in 2020. The two are I think not unconnected.

Dr Google and hyperchondria do not make happy bedfellows, but sadly ill-informed doctors make Dr Google an invaluable helper in protecting the patient from negligent care and legal redress.

B12 diagnosis and treatment is easy, cheap and safe. Unfortunately the medical elite choose to look down their noses at patients with ill-defined multiple symptoms that are difficult to validate, but no less real.

Doctors need reminding of this if they choose to play the cyberchondria card!

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I thought that was interesting - particularly contrasted against the reported 9 years or so that it takes some women to obtain a diagnosis of endometriosis. And Coeliac's Disease used to be 15 years to diagnosis? Some inflammatory arthritis takes 5-10 years, depending on the presentation. And nobody here would be startled to learn that B12 deficiency/PA can be a very hard path to diagnosis.

Conflating health anxiety with understandable concern is a nonsense. The people with health anxiety often have insight into how wretched it is for them to be concerned that every random pain is a horrible disease, every headache or chest pain a sign of imminent stroke or MI. Hardly the same thing at all as someone who has been struggling with some symptoms for a while and would like to be evaluated for a plausible diagnosis - calling them cyberchondriacs is a mark of disrespect for both them and the people supposed to be dealing with them with professionalism and compassion.

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Totally agree.

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My B12 was undetectable by the time someone figured it out in 2001. I was a mess and I am sure I would have died from a heart attack it was acting so erratic.

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In fact, thinking about this a little more.

I have an (allegedly) rare genetic disorder. Now, I think, based on my own experience that it's likely to be rarely diagnosed rather than rare. It couldn't be more obvious that 'something' is awry in the area - it's completely visible, and a glance by a knowledgeable person should prompt its existence as a potential diagnosis.

How many people have a so-called 'orphan disease' or rare genetic disorder*? Apparently 1 in 50 of us. Now, the clinical impact of it may well vary enormously. Some people might not develop problems until later in life or at all. However, others might spend many years looking for a diagnosis, particularly if the condition has multiple, systemic impacts.

How many cyberchondriacs are experiencing inappropriate treatment for a not yet flagrant chronic condition (tho' it may well be flagrant)? How many have an undiagnosed or unrecognised rare genetic disease? It would be useful to know that to balance against the 'health anxiety' and 'cyberchondria' rhetoric.

*Although mine is categorised as a rare genetic disorder, it's been identified for >100 years so it's not as if it requires genetic testing.

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Again I agree absolutely. In view of the lifelong nature of B12 deficiency and its impact on daily life it should really be classified as a disability under the Disability Discrimination Act which would give patients some legal clout if they are not treated fairly. Just a thought!

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That's strange Dewbuc because a cybersite (sounds like a new disease :) ) like this must actually save the NHS money by promulgating a cheap treatment and investigation for un or misdiagnosed B12 deficiency instead of that spent on unnecessary antidepressants etc....

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I totally agree with you. To me diagnosis based on the patient's story and a simple B12 level and subsequent appropriate replacement therapy is incredibly cheap but has the potential to save the country millions in NHS care, social care and benefits payments, not to mention litigation costs. Coincidentally of course it could give patients their lives back. You note I put the financial horse before the cart as cost effectiveness and not patient care is paramount!

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But what about some cybersites that promulgate unnecessary treatment by implying that 99% of the normal population should be given expensive treatment, just because a certain blood test result puts them below the top percentile?

For every site containing useful info there's a dozen more handing out misinformation.

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That's true and you have to be very selective in what you choose to believe. I find it very scary that patients are left to their own devices and cannot depend on their GPs who should be capable of sorting out reliable information and guidelines and acting on it correctly. Many patients find it very difficult to sort out the wheat from the chaff and to understand the complexity of the situation. They shouldn't need to!

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