Professor Graham Hughes' Monthly Blog - January 2019

[MaryF]

ghic.world/self-help/blog/j...

Mary F

[Tofino5]

Thanks for faithfully posting these every month MaryF!

[Fra22-57]

Another good read and huge congratulations to Professor Hughes on his award.well deserved

[Lure2]

Thanks Mary!

Good as always.

[KayHimm]

Always appreciate Professor Hughes’ blogs. What he says cannot be repeated enough times: classification criteria are not diagnostic criteria. This is so important because people need treatment even if they do not meet classification. Many of us do not have APS because we have not had a clot but have the antibodies and other symptoms. Those symptoms can be addressed too. Thanks for sending! K

[MrsMouseSJ]

I'm very pleased to hear of the very well deserved award made to Professor Hughes' in recognition of his research and work. Congratulations to him!

[Wittycjt]

Bravo, Prof Hughes 🍾 well done as always!

[lupus-support1 Administrator]

Many thanks Mary!

I will repost to LUpus Patients Understanding & Support (LUPUS)!

This is probably THE most important point made by Dr Hughes:

Hughes syndrome, like other illnesses such as lupus have internationally agreed “classification criteria” – useful for disease classification, but NOT for diagnosis.

For SLE patients: how many times have you been told you don't have lupus because you don't have 4/11 Criteria, yet the authors clearly state that the Classification is indented only to select the same kind of patients in clinical trials and NOT for individual diagnosis. Yet, doctors ignore this important point. SLE should be based on clinical diagnosis!

Once again my observation: Dr Graham RV Hughes has been given international awards. By rights, he should have been knighted - there are few people alive with a medical syndrome named after him - yet the UK ignores him! Why? Politics.

Recently, there was a post by an understandably distressed patient who was told by her "doctor" who had trained under Dr Graham Hughes, that he didn't agree with him! The sheer arrogance of this doctor highlights a problem for patients, particularly women, but not exclusively so: how many of us with SLE and/or APS (Hughes Syndrome), can be ill treated by the very people who should be caring for us? Dr Hughes also noted this phenomenon.

This is about envy and jealousy. It is wrong!

Sadly, even charities and non-profits can mirror this trait. Instead of working together, there are petty rivalries.

End of rant!

[Ray46 in reply to lupus-support1]

In my opinion this isn't (just) about envy and jealousy, it is to do with far more fundamental changes in medical science / profession over the last few decades.

"Evidence based medicine" has moved from being a tool, to a crutch, to a straight-jacket which reaches down and covers the doctor's a**e. If the criteria are used to select for the clinical trials (i.e. evidence) then it follows directly that if you don't fit the criteria then none of the evidence applies to you - and "no evidence" now often means means "no medicine".

We seem to have lost sight of "absence of evidence is not evidence of absence" leaving only "in the absence of evidence all we have is opinion" - and opinions are like a**eholes in that every doctor has one but these days they keep them well covered behind layers of "guidelines" "recommendations" and "best practice". Increase in litigation probably has to take some of the blame, but there are other factors including changes in working practices (todays clinicians work far fewer hours in training, hence see far less, hence have much less experience to inform opinions) and technology ("current best practice" is now a couple of clicks away, a viable reference even in most emergencies, where it used to be days to find which book, order it, wait for it to arrive).

[lupus-support1 Administrator in reply to Ray46]

I agree!

[Chatterpie in reply to lupus-support1]

Oh I remember the difference of opinion from a Dr. at Soton General who had trained under Dr Graham Hughes........he told me the diagnosis was ridiculous....and 'isn't he retired yet?'......that doctor caused me no end of problems.....I was treated badly by Soton depts for several years because of what he wrote in my notes. Then I tried another Hospital not far away....my notes were forwarded to the new Dr. he repeated much the same because of the Soton Dr and finished off with 'He must be retiring soon surely'. This Dr told me I was having knee problems because I was FAT, he really enjoyed making me feel worthless. It only stopped because I informed him that on my next visit I may record him! I found a new Dr...... and I had a new knee months later after Professor Hughes explained that in his experience I would need a complete knee replacement and not a partial. The knee surgeon did another MRI and found as the Professor had predicted the knee had deteriorated in only a short time, so a complete knee replacement was necessary. My hubby was present for all the appointments.....how silly is that, having witnesses to the tirade of nastiness! It was unnecessary and unprofessional to take out their own issues on a patient....I will never forget how bad it made me feel. As you can imagine I am slow to trust any new doctors. Just one word....KARMA.

[lupus-support1 Administrator in reply to Chatterpie]

Disgraceful! Dr Hughes was my 6th rheumatologist! My parents pushed me to see numerous rheumies who were unable to diagnose me. I was under Prof B at Westminster Hospital who put me on steroids and all others had been taught by him! Although he suspected SLE (I read his notes upside down when he left room) he treated me, a woman, as someone who couldn't possibly understand! Looking over his half-moon classes, he pronounced my "socks" were "too tight" causing bleeding under skin. I never wore socks!

After 18 months of watching the symptoms accumulate, Dr Hughes diagnosed me with SLE, a variant with dermatomyositis and APS!

There isn't any excuse to mistreat a patient and doctors who do so should be reported for abuse!

With good wishes,

Ros

[bernieembleton]

For some reason I cannot see the blogs.i think it could be my tablet. I will have to try and view it on my laptop.

[MaryF Administrator in reply to bernieembleton]

It may be a glitch on your device, I do hope it works on your laptop. Best wishes. MaryF

[bernieembleton in reply to MaryF]

Thank you Mary. X