CLL Support Association
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Shared Decision Making, Risk Assessment, and The Doctor- Patient Relationship

Hi friends,

I just shared a fun post on my blog bkoffman.blogspot.com about the hazards of arbitrarily applied guidelines in caring for patients.

It cuts too close to the heart for comfort.

Stay strong

Brian

bkoffman.blogspot.com

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And they say the NHS is failing! Do we want to swap it for this scenario?

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But these scenarios DO happen in the NHS, Chrisgranny..

I was having ongoing stomach problems – couldn’t eat full meals, and getting very distended and uncomfortable afterwards. My helpful GP wanted to send me for a gastroscopy, but I didn’t “tick enough of the boxes”. He gently hinted that if I could say I had pain, or was losing weight, he could do things differently.

I couldn’t really say that… so it was a long wait (several months) to see a gastro specialist, then another wait to get a gastroscopy done.

As it happened, my stomach was fine – which was of course a big relief. But I’d had several months of worry (partly because my grandfather had died of stomach cancer and it wasn’t nice).

It did occur to me that the whole process would have been much quicker if I could have imagined some weight loss or nasty pain (like Brian’s guy starting to smoke a cigarette). :-)

Actually my stomach symptoms gradually got worse, and I DID start to lose a lot of weight. Then I was sent for an urgent scan, and it showed that my spleen was squashing my stomach and causing the symptoms. Actually that was quite a relief – at least I know what’s happening, even if there’s no easy cure.

I don’t know what the exact criteria are, for getting patients onto the “urgent 2 week rule” for followup of symptoms suggestive of cancer. But I don’t think having CLL is considered a factor. Which seems wrong, considering our greatly increased risk of secondary cancers…

I wonder if there’s any chance of that being changed, in the future?

Paula

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So sorry to hear this, Paula. I'm surprised your GP didn't insist on an investigation, considering your history (CLL and Grandfather's death). And after all it turned out to be CLL related, which is ironic. I think this sort of treatment is unacceptable, and is the worst side of the NHS.

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Thanks Chrisgranny. But I don't want to blame my GP - he was trying to be helpful, and wanted to do something quickly. That's why he encouraged me to say if I had pain or weight loss as well as other symptoms.

He did actually refer me to a gastro specialist, it just couldn't be done quickly because he had to stick within certain rules/guidelines (like the imaginary doctor in Brian's story). It seems that having CLL and a Grandfather who died of stomach cancer are not valid criteria for urgent investigations for someone with stomach problems. I felt that it was the system that was too rigid, rather than the GP's fault.

So, I can see why Brian's story is very funny, but as he says, "It cuts too close to the heart for comfort"

I don't want to always see the bad side of the NHS, because there is so much I am thankful for, about it. And we can sometimes find ways to work the system...

eg. If I'd contacted my CLL doctor about my "stomach" problems, instead of going to my GP, things might have been different. CLL docs are more used to thinking of enlarged spleens causing stomach problems. Anyway, as it happened, I only suffered prolonged stress and worry through the delay. I did NOT have a stomach malignancy, so in a way, no harm was done...

But for others, the outcome might be more serious... Sadly we've heard examples on this site, of serious cancers not being detected as soon as they could have been... I think that having CLL should be added to the list of risk factors that allow doctors to follow up certain suspicious symptoms more urgently.

Paula

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' I think that having CLL should be added to the list of risk factors that allow doctors to follow up certain suspicious symptoms more urgently'.

I totally agree with you, and am disturbed to think it isn't already.

I do wish you well and hope things improve for you.

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Thanks Chrisgranny

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Brilliant. It took me a couple of seconds to realise the gist. But it made me laugh.

Thank you brian.

Sue :-)

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Very good glad to have read this.

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