NICE and nice tweets!

Wow! Now this is a real treat to return home from a night session with GP OOH and realise I have unintentionally stirred up a controversy . This is certainly a very humbling experience for me and shows both the power and limitations of social media, particularly twitter.

@amcunningham ‘s suggestion is certainly very helpful. A blog would certainly have helped to clarify the reason for my rather random tweet.

So here’s what happened. Recent NICE guidance on CA 125 resulted in unsurprising headlines like “The £20 blood test that could have shown my bloating was cancer

@amcunningham has tweeted some very thought provoking observations on this. In its information for people NICE suggests that GPs should offer this test to women with some specific symptoms, but offers GPs no support to help make a shared decision with their patients. Hidden in the main guidance are facts like “… around 1 in every 100 women referred to secondary care with positive serum CA125 or ultrasound would have ovarian cancer” and “… around 1 in every 2,000 women with negative tests would turn out to have ovarian cancer.” I like many other feel this is very important and should get equal prominence, if not more.
This led me to check other public information leaflets by NICE. And that’s how I meandered into the sarcoma guidance published in 2006. Here NICE correctly states that “Good communication between patients, their families and healthcare professionals is important: it can promote better care and support and reduce stress for patients and families.” NICE says that it “believes that the key to improving care is rapid referral for assessment, diagnosis and, if sarcoma is diagnosed, treatment at a specialist sarcoma treatment centre.”
So this leads to the hypothetical lady in my tweet “37 y o lady presents w/ well defined swelling over leg >1 mo; mild pain. No trauma. No significant past hx. Please suggest work up in #1care “. It probably wouldn’t have crossed my mind, certainly not at the first encounter, to suspect a sarcoma. This is my deficiency that I hope to address. So what does NICE suggest to the hapless primary care provider like myself?
On page 27 of the main guidance it acknowledges that GPs need a reliable source of information and that there is a need to increase awareness of sarcoma. Soft tissue sarcoma can be very difficult to differentiate clinically from benign tumours. According to NICE, features suggestive of malignancy are:
  • lump > 5 cm
  • lump increasing in size
  • lump deep to fascia
  • pain
Anyone with a possible sarcoma should be referred to diagnostic clinic for biopsy to be seen with in 2 weeks.
I have never been involved in the diagnosis of sarcoma and hope that it remains so. But I have certainly seen people undergoing mutilating surgeries and dying from it. There is much good in NICE guidances. I only wish that they were more user friendly.
Thank you for the attention and look forward to your criticisms.


Filed under NICE, Shared decision making

4 responses to “NICE and nice tweets!

  1. ffolliet

    well done! stimulating and informative. the other blog that would be interesting to read is the possible effects of that tweet. “when a tweet falls in the forest, does anyone hear?”

  2. Great! I’ve used storify to write up the story of the tweet. You can read it all here:

    I was going to embed the NICE guidance in the storify but it is 142 pages long! Later I might add an image with the referral guidance. If you read my blog you’ll see that I found a discussion through google where patients were explaining that no-one ever came back to explain what there lumps could be. It made me think of sarcome and reminded me that a firend of a friend had sadly died from this condition after presenting with a lump in his leg.

    Many thanks!

  3. mnicsleepteachr

    Thanks for your really interesting blog. It certainly did open some debate so, for me, indicates further potential of t’internet for discussion and interaction between interested parties.

  4. V

    Thought provoking and I utterly agree. The NICE guidelines for the main are anything but user-friendly and more challenging of them as the main resource for evidence-based actions is much needed. Thank you!

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