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14 February 2016 at 10:16 pm #11944
There is a certain collective loyalty to the NHS in the UK such that people do feel bad complaining about it.
I think the anger is with the NHS bosses and management, but people still feel loyalty to many of the working Drs and nurses that are doing their best under extremely bad management ….
but yes, I am not afraid of complaining, but I also have praised the medics that have helped me on the public ‘write a review’ sites.
Really, I do hope the Hep C Trust get their data together, I’m sure some clear pictures of shall we say ;certain individuals’ may become apparent if it’s done properly?Mind you, when you are worred about your health and feeling unwell is the last thing you feel like doing .
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC14 February 2016 at 10:42 pm #11945Really, I do hope the Hep C Trust get their data together, I’m sure some clear pictures of shall we say ;certain individuals’ may become apparent if it’s done properly?
I’ve been giving some thought to this subject – which I read you to mean the public naming and shaming of these ‘certain individuals’, as well as the praising of the helpful ones. No matter how I look at it, I think it is only going to be effective if people are prepared to give up their anonymity and put their names to the complaints that they have. Otherwise anybody could make up unsubstantiated tales of woe to smear somebody’s reputation. But as we all know, giving up one’s anonymity can be a hazardous path and not for everyone. Plus it opens you up to charges of libel and lawsuits.
So I’d have to say that anybody thinking about doing an ‘expose’ should be very clear about their goal and what it might involve to do it ‘properly’. Also about the possible consequences. I would never try to deter somebody with the courage to do it, but just say to go into it with your eyes open.
dt
14 February 2016 at 10:50 pm #11946Hmmm that’s interesting Dt – I thought it was so they could use the data for their patient reps in each treatment centre to help access and keep an eye on any rogues rather than name & shame, either way, I will look into it carefully and how/if they will go about it…I do not feel like going public at all ! I do think the HepC Trust may work with PALS too.
(edit) What I care about, is patient access to medicines, being at the ‘centre of care’ and being treated with dignity and respect.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC15 February 2016 at 1:04 am #11955dointime wrote:Of course all the records should be digitally accessible! We should also have the option of getting all our records downloaded straight to our mobile device if we want, or to a medical card which we can hand to the doctor who needs it. This goes for our dental and optical records as well. And yet we still have to navigate these legacy systems, waiting for weeks for records to arrive where they are needed because somebody somewhere along the administrative chain went on holiday, or something.
Hi DT, did you know that this is how it works already in France? Well, not the mobile phone part, but pretty much all the rest.
French people have a little green card (“carte vitale”, which is like a bank card, that they hand to their Dr on each visit. This gives the Dr immediate access to their record. They use the same card to pay for their medical costs in a clinic or blood-test lab. About 40% of the cost of any treatment is paid by the government. The rest by private insurance. But the two systems are completely linked together, and most French people choose to pay for the extra insurance cover. This means that they just flash their little green card and everything is automatically covered… This also explains why in France there is a pharmacy on just about every street corner.
But the most amazing part (for us Brits) is that the clinic or laboratory sends the results to you, the patient, with the doctor or specialist in copy. So every French citizen can pull out a folder containing their own entire medical history…
Probably way too brilliantly simple for it to ever catch on in the UK?
I asked my French girlfriend how it could possibly be so easy? She told me the answer is simple. The French are world-experts in complaining about anything and everything that their government does for them…
Diagnosed Jan 2015: GT3, A0+F0/F1. Fatigue + Brain-Fog.
Started Sof+Dac from fixHepC 10-Nov-2015. NO sides.
Pre-Tx: AST 82, ALT 133, Viral Load 1 900 000.
Week4: AST 47, ALT 58. VL < 15 (unquantifiable). Week12 (EOT): AST 30, ALT 26, VL UND Week16 (EOT+4): AST 32, ALT 28, GGT 24, VL UND Week28 (EOT+16): AST 26, ALT 22, GGT 24, VL UND Ever grateful to Dr James. Relapsed somewhere after all that... Bummer! Jan 2018: VL 63 000 (still GT3).15 February 2016 at 3:06 am #11957Vororo – I found your post just fascinating. No I didn’t know all that, but what your French girlfriend says makes sense to me.
Makes me wonder if we Brits are collectively under the spell of Stockholm Syndrome with regards to the NHS.
https://en.wikipedia.org/wiki/Stockholm_syndromedt
15 February 2016 at 3:42 am #11958Stockholm Syndrome is the only way I can find to explain giving Cameron a second term. With maybe some leeway for gerrymandering.
I think the protestant english speaking countries have a very heavy legacy of contempt for the body, and fear of its natural functions that I am sure is contributing to their dysfunctional health systems. Look at puritan America for the prime example.
There is a strong cultural resistance to allowing people to connect and maintain their own physical being…
Added to that the financial rewards of keeping that kind of control over people.If people are able to manage their own health who knows where it will end. Maybe they will start to grasp the importance of protecting the health of the biosphere as well.
F49HepC25ysGT1a
mild”15 February 2016 at 1:09 pm #11968Well said FFox
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 ‘In the slow lane’
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC -
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