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Clinica
The Informed Patient: who are you kidding?
10 March 2010
Amanda Maxwell , Editor, European Regulatory Affairs

Vomiting any blood or dark particles that look like coffee granules was featured on the menu of potential side-effects for one of the medications that I had been given for excruciating back pain. Constipation, nausea and vertigo were among the list on another drug’s leaflet. And suicidal tendencies were cited in the third.

I really had no desire to risk developing any of the wealth of side-effects that were on offer. But as I stood in my kitchen, squinting at, and barely able to read, the tiny patient information leaflet typeface, it dawned on me that I really had no idea what the risks were from these scraps of paper. An internet search did not help either.

These information leaflets did not explain what the likelihood of developing these side-effects were, in percentage terms, and as far as I am concerned, I could only make an informed choice based on that information.

I have never been one for taking pills unless absolutely necessary and found the patient leaflets alarming. I did not feel they were sufficiently informative and believe that they served only to cover the drug companies' back. What risks was I, personally, at of developing the side-effects.

Is this what we mean when we talk of the age of the Informed Patient? And how are medicines with side-effects as alarming as some of these get past the regulatory authorities, I wonder?

The pain was so bad and my determination not to take these potentially noxious substances so strong, that I spent the next two hours in the jacuzzi at my gym. Relief at last.

But it only lasted until I slipped out of the water and then the pain and the spasms returned with a vengeance. I could not sit, lie or walk without pain. I had no option and began, with trepidation, taking the pills.

The good news is that I have not been “vomiting coffee granules” or thinking of taking my own life, and that the pain, after 48 hours, has definitely moderated – enough to be sitting at my computer writing this and with the help of a hot “wheatie” bag over my shoulder.

But, as an individual living in this technology age, I feel frustrated and upset. I do not feel that a structure of either information or support has been established.

I felt on my own with these unfathomable patient leaflets. There was no feeling of a helpful, informed healthcare professional giving guidance, and I suspect my experience is probably typical of many.

In my case, the doctor was too busy to see me - they nearly always are, and seem to trust my ability to self-diagnose and send them a note about it.

I guess this is a growing trend as our healthcare services suffer increasingly from lack of resources.

And so, I was given three boxes of strong medicines with alarming warnings and no one told me of the less risky, alternatives that were on offer. It was only instinct that led me to find relief in the jacuzzi, the wheatie and, lately, lying on a heated bed blanket on its highest setting.

What I am saying is, if the healthcare system really cannot cope with the demands, if healthcare professionals are that stretched (and there are predictions it will get worse), then my plea to all those who sell medicines and OTC devices is to provide patient back up.

Surely it is time for the healthcare industry and professionals to work together to provide an officially accredited self-diagnosis site, to provide proper patient leaflets that tell you how to deal with the condition – the medications, or devices, and their side-effects – and to offer a way of calculating the individual's risks of developing the side-effects.

And a message to the pharma industry: do not just market your products. Tell the patient about self-care that helps – most effective types of heat, for example, or exercises, and even homeopathic options that have a reputation for having some impact. This should all be in one, easily accessible and accredited place.

Only then will patients really feel they are “informed” and be able to place their confidence in the industry that informs them, support them and supplies them with products that are meant to relieve or remedy their conditions along with a thorough explanation of the risks and degree of relief they might offer.

I was definitely not “informed” and felt the pharma industry supplying my medications was working in isolation to fulfil the minimum regulatory requirements in terms of informing the patient, and was certainly not part of an overall structure of caring for the patient.

 
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