Interactions with medical practitioners - am I the unreasonable one?

[NarcKiddo]

I've been undergoing a lot of medical investigations recently. I am in the UK. Our NHS is creaking badly. However, I am lucky enough to have private medical insurance through my husband's job, so at least I am getting the investigations/scans etc done. Had I been at the mercy of the NHS I would have been told to keep a food diary and come back in five years if I hadn't died in the meantime. I jest - but only very slightly.

Nevertheless, I could write a novel about the shoddy treatment and attitudes I have encountered even in the private sector.

But this is what is currently making me steaming furious, and I want to record it here in case I am being unreasonable. Please feel free to say if you think I am!

After miscellaneous investigations that came to nothing, my GI consultant referred me to a liver consultant.

I saw Liver Man and had a long and productive conversation with him. I thought he was friendly, helpful, competent and reassuring.

At the initial appointment with Liver Man he told me what further investigations he would be ordering (bloods and a scan). When we got the results we would be speaking again to work out where to go from here.

Liver Man then wrote a letter to GI Man (who had referred me to Liver Man), with a copy to my GP and a copy to me, reporting on the consultation and next steps. All fine by me.

I got a phone call this week from Liver Man's secretary. She was alerting me that she had sent an email which said I needed to get more bloods done. She wanted to make sure her email did not get lost in my junk folder. I was out at the time and said I would sort it out when I got home. All fine by me.

I got home and found the email. It contained details of who I should contact to get the bloods done.

It also contained a copy of a letter from Liver Man to my GP.

This letter said that my initial bloods had revealed Hepatitis C. The further blood test was needed to see whether it is from a past infection, now cleared, or from an active infection that would need treatment. If an active infection then I would have to get treatment on the NHS.

The following day my GP emailed to me a copy of the letter she had received from Liver Man (I suppose in case I had not already seen it) with no comment whatsoever.

And the more I think about it, the angrier I get.

Hep C was never really discussed as a possibility when I saw Liver Man. He did say the bloods would include tests for all Hep variations just to exclude them. I have never engaged in any of the behaviours typically associated with Hep C. I have always felt there to be something of a stigma around Hep C. It is certainly not a pleasant diagnosis to be grappling with, even if the infection is cleared.

So to be told about it in this manner feels demeaning. Liver Man has not told me directly. This is not a report of a consultation at which I was present. Liver Man has got a test result, not told me directly (perhaps in a nice way, given the result) but has just written to my GP. Not only with the result, but with a statement that I will have to go to the NHS for treatment if the infection remains active. No explanation why.

GP has compounded my annoyance by sending me a copy of the letter with no explanation or reassurance either.

I am the patient, now dealing with the emotional impact of an unexpected and perplexing test result, and yet nobody has addressed me directly. These medics are communicating about my condition over my head, as if I were - I don't know. A child? An incompetent? A medical case with no human attached?

[dollyvee]

Hey NK,

I've dealt with my fair share of doctors, health issues and the NHS over the last 13 years and I get where you're coming from. This is just my take, but I think there is something so fundamental about health and it's correlation to our "survival" that tends to bring up a lot of stuff for me, even when I know there is actually something wrong. I can remember times when I was in the hospital around five (six? seven?) years old (probably younger too) because I couldn't breathe. I had asthma and my m used to smoke. It was a constant battle into my teenage years because of how it would make sick. I also remember being in the emergency room one night on oxygen, and my m feeling frustrated because she had to get up early and go to work the next morning. I think my frustration at doctors as an adult and the lack of being seen (well, neglected) as a child are correlated.

If I were to take a step back from this, I would say that perhaps the doctor went directly to the GP in an effort to save time. Though perhaps their bedside manner is lacking as well. I've also had good chats about my results when they came in with GI man who was interested to know what I was doing. In the past when I've had GI tests done, the GI man has always communicated through the GP who then sends the necessary tubes etc. I've had more than enough issues with things getting lost at the GP as well, or telling me how it's basically all in my head every time I go in (it's not! and is why I see a functional health pracitioner now but I digress)

I hope you find some space to deal with things coming up and are on the right track to deal with the issues as they come up.

Sending you support,
dolly

[Bermuda]

No NK, you are not being unreasonable. Absolutely not. I feel the rage too. You should be told, and you should be told in a kind compassionate way. It would be normal for anyone would have questions or concerns, and there should be an immediate dialogue, especially since it's potentially active. At the very least let you know as far as their expertise allows, and allow your GP to fill you in on more. You deserve that, and you deserve transparency if it's because of some sort of procedural system when you take the tests.

"We will do these tests, just in case, it's just a long shot. If in the event there is a positive test result, I will be unable to discuss the results with you because of X and then you will be forwarded to Y who will be able to better answer your questions."

Here in Sweden we actually have to consent to have medical information shared with other specialists. Consent and transparency.

[Armee]

 

You are not being unreasonable at all. They are being unreasonable but wholly predictably inconsiderate.

It's possible, if it is HCV, that it is from your mom. Maybe she doesn't have any risk factors, I don't know. My mom had hep b and c and never told us but did expose us to her blood and body fluids, plus childbirth is a route of transmission. Hopefully though it is not hep c and if it is hopefully the further tests will reveal it is not an active infection. And aaarrrrggg to the gynae too.