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Fibroscan - the scoring card 8 years 4 months ago #2616

LG - Your experiences with this consultant are so dire that I wonder about the suicide rate of people attending his clinic.
I think it is really important that you are highlighting the kind of terrible treatment that some of us have to put up with. People should know that they are not the ones at fault, that some docs simply have their heads up their arse. I think there is a real concern that vulnerable people might be going to this clinic and coming out feeling abandoned and hopeless. Let's hope that they are reading here.

dt
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Fibroscan - the scoring card 8 years 4 months ago #2617

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Unbelievable, LG - "we are not concerned with symptoms" :blink:

Then what the hell are they there for, just asking! (apart from drawing a salary under some kind of bizarre false pretences)


This is really /headdesk material...honestly I have so much respect for you and fellow sufferers in the UK, enduring such patent ridiculousness, from the people who purport to have your medical interests at heart. For all its shortcomings, thank god for the aussie system which hasn't sunk to such depths of stupidity, and I hope it never does.

Edit: Well said, dointime. We need to help get the word out as widely as possible.
GT1a since 1988, diagnosed 1990
F0, tx naive
VL 262,000 ALT 40 AST 26 GGT 13 Fibroscan 04/12/15 - 2.9
Started Mesochem sof/dac 12 weeks 01/01/2016
11/02/2016 - 6 weeks UNDETECTED
AST 26
ALT 26
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Fibroscan - the scoring card 8 years 4 months ago #2618

Your experiences with this consultant are so dire that I wonder about the suicide rate of people attending his clinic.


I am not suicidal. but the 'consultation' with this Dr has definitely had a delayed effect on me and I am feeling down about it.
I think delayed shock.

The fact is, he made me feel like I shouldn't have been there and am selfish to ask for treatment. Worthless.

Yes, I have decided to highlight it. I'm sure this won't help my 'cause' - but I feel it is important that people know how things are for some of us , especially if we dare to ask any ask questions.

My previous consultant was a lovely, kind and excellent Dr, so they're not all the same, but I was allotted this one without any notice. I do feel they are shipping in younger, less experienced Drs to save money now.

It was very awkward because he also contradicted himself - and it became apparent to me he had lied. He knew it and I knew it. This was at the start and unfortunate - For me that is. (I did manage to keep quiet re the 'contradiction' and not point it out)

I have been urged to 'press for an Ultrasound and treatment as soon as possible' by another Dr, would rather not say who. How can I do this if I am not to be seen until minimum June 2016?

I have brought up the matter of the questionable 2nd fibroscan and this Drs reponse ws 'There's no o difference between 8.7 and 6.1' .

It has made me rather tearful, you seek medical advise, wait 8 months for an appointment and they make you feel like a ungrateful beggar. I will clearly have to treat myself, although I get the feeling monitoring will not be forthcoming on the NHS.
This is not my point of principle though, that is the manner in which we are (un) - treated

Then what the hell are they there for, just asking! (apart from drawing a salary under some kind of bizarre false pretences)

My feelings exactly zhuk.
Think he was drafted in to tell patients they will not be treated yet and why. No intentions at all for a medical consultation.

I'm starting to wonder if there is something on my medical records - It's been difficult all the way though - Excpet for one nice Dr and I originally saw him privately, but he did go the extra mile.

My first Dr after waiting for 3 months after diagnosis, didn't turn up - He just left a note with the receptionist saying 'He didn't want to see me'.
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

Fibroscan - the scoring card 8 years 4 months ago #2620

"It has made me rather tearful, you seek medical advise, wait 8 months for an appointment and they make you feel like a ungrateful beggar."

I think that you must be a very strong person mentally to have withstood this kind of treatment, seen through it, and written here about it. You have survived what sounds like a very toxic series of experiences with the NHS and you should give yourself a pat on the back. Also avoid more of the same encounters in the future, for the sake of your own mental health.

My doc is not a bad doc, but when I complained of fatigue, he blithely made it known to me that I could avail myself of their temporary respite facilites during my wait for tx. This would be a self pay of course. Luckily I can still do all the functions of daily living, ie. get up and get dressed, go to the toilet, feed myself, etc. I bit my tongue but wanted to say that if I wanted to spend that kind of money I would check myself into a 5 star hotel for a week and order up room service. I can just imagine myself in a respite care facility, paying through the nose and then waiting all day till the nurse could be bothered to get me a cup of tea. No thanks.

My point in telling this is that I can just imagine him with the same blythe tone recommending me for a place in a permanent care home. With the level of fatigue I was feeling that wouldn't have been too long in coming. They'd rather pass you from pillar to post right into the grave than write a prescription for generics to make you better. And they'd be cheery about it.

dt
The following user(s) said Thank You: Joy, LondonGirl, Jolie

Fibroscan - the scoring card 8 years 4 months ago #2622

LG - I also note that you are a small woman. I am quite tall but I have friends who are small women. When we compared notes on the behaviour of (UK) men we found to everybody's astonishment that small women seemed to draw an inordinate amount of bullying and generally threatening behaviour. My smaller friends reported feeling threatened when they were on the street by themselves, much more than me. One of them has now left the UK and lives in the Netherlands. One of her stated reasons was that she never felt safe in public places, on the street or the buses, etc. I was shocked to hear of her being touched inappropriately on the buses. Nobody ever did that to me, but I am big enough that I would have got up and punched them, or so they might have thought.

So, please appreciate that this is all hearsay from my diminutive woman friends. It has not been my own experience in the UK. But I trust them. Unfortunately for you, you may have encountered a bit of this neanderthal throwback.

Apologies in advance to all UK men to whom this does not apply.
dt

Fibroscan - the scoring card 8 years 4 months ago #2623

Also avoid more of the same encounters in the future, for the sake of your own mental health.


Yes, this is my intention - The trouble is financial, or it would be a definite.
I will not be putting myself in that situation with that consultant again.
The NHS is bad for my physical and mental health, no doubt about it.

he blithely made it known to me that I could avail myself of their temporary respite facilites during my wait for tx.

'blithely' - the word that describes the tone perfectly.

I don't know if I can be strong for much longer in that department DT - That last encounter has made me tearful and even more withdrawn. These incidents add up .

I do however feel that I should address that a typo from a previous consultation which has my Alt at 21 when it was 71 should be addressed, if I can psyche myself up. I wonder if my latest will be written as 14 instead of 114?!

There is also the incident of all my personal consultant letters and data etc being sent to the other side of the country to an unknown person in a place I have never been to. My GP has not received any info on BP or slight Tachycardia, so when I asked him for a check - up in this area, he told me to 'Go on holiday'. So I am becoming ever anxious about talking to any medical professionals. I wonder if my anxiety shows? You can end up blaming yourself, you know?

I don't know if sharing this will do anything to help anyone. Maybe , just maybe a professional in the medical field will read and have a little more understanding of how we patients feel.

Read this quote from a Dr on Twitter this morning - food for thought?

" "When we lose sight of the fact that data are actually about people we will lose sight of the main purpose"...
Full article : blogs.bmj.com/bmj/2015/11/11/mary-e-black-data-a-love-story/
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

Fibroscan - the scoring card 8 years 4 months ago #2624

I do see your dilemma.
So if you have to work with the NHS then can you change your GP? Pick a woman, preferably a small one. No guarantees but at least you'll eliminate the neanderthal male factor.

If you were not anxious about all this it would be a miracle. Unfortunately the times when we have to be the most strong are the times when we are feeling the worst. It does not help your cause to break down. I learned this on the trial I did when I had to really fight for what I wanted at a time when I was completely messed up by the drugs. So I guess there's a lesson in this. Do the fighting before you get on to the drugs.

You are entitled to get a complete copy of your medical records for a small fee (£10ish) and I would recommend you do this, if only to check on your suspicions that you have got some kind of a black mark against you. Demand this and demand a timeframe for receiving them. There must by law be one. Also when you have your records it will be easier to correct any mistakes in them. Then you and your new GP can start off on the same page.

Have no doubt that others will be helped by reading this who are currently going through their own encounters with mediaeval mindsets and practices here in UK.

dt

Fibroscan - the scoring card 8 years 4 months ago #2625

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LD,
After reading your story, If I was you I'd immediately change both my GP & the Consultant. You have every right to do so if you're not happy.
I actually did that a way back when I was still living in London, stating that I was not happy with the services I received & the way I was treated & talked to.
I registered with new GP at another surgery & went to another hospital where I saw a different consultant & I was much happier there.
Since I moved out of London completely I was lucky enough to find a nice GP here with whom I have good contact, if I did not I'd ask to be seen by someone else or change the surgery all together. Basically it's a pot luck when it comes to GP's & consultants, you never know who'll get.

Remember that all NHS employees are civil servants, meaning their job is to serve us the patients & they are employed by us via the taxes we pay which includes their huge salaries.
You're the boss! , so there is no point wasting more time with your current doctors :)
Geno 3, Fibro 8.7 pKA, tx experinced in 2005 - Peg/Riba, relapsed.
Started tx 1/12/2015 with Indian Sofo & Chinese Dac.
5 weeks result all normal, ALT 18 - down from ALT 73 at the start of tx.
5 weeks HCV PCR RNA - UND. - down from 2 ML
9 weeks HCV PCR RNA - UND.

Fibroscan - the scoring card 8 years 4 months ago #2627

Thank-you DT and Jolie I don't know if it's bullying, yes, maybe emotional bulling, I have my reasons to suspect that, or just pure arrogance.Many NHS staff are overworked and stressed too, but they are being paid to do their job and we are the patients, you know?I am a teacher, when I was diagnosed it was because I also danced and muscles had wasted so had to give it up as muscles were not supporting joints and I was getting injured and I had mentioned this However, I notice on all my letters I am listed as an ex-dancer. Maybe snobbery, thinking dancers are not very bright? The last consultant definitely talked to me like I didn't have more than one brain-cell, maybe he thought that one was was in my feet !

I have already changed hospitals once. The 1st hospital was when Dr didn't show up & left note.
Then Hep C nurse 'forgot about me' (admitted it and apologised eventually) so I couldn't find out my Genotype or blood test
results etc After months or more of fighting for these, I changed hospital. At that hospital there is no way to contact them, you just get an answer-phone IF you're lucky. Eventually I left a message saying 'I do hope I don't have to take this further' then someone called me to say they had 'forgotten about me'. Not that they had my notes to hand, so still had to fight for those details!

Was so much happier at my new hospital, it has been great compared to the first, nice staff, never had to wait for long, even with admin mistakes and questionable fibroscan I have been much happier there until now as I had a good consultant. To change again and set myself back to the beginning is not something I relish the thought of. and no doubt will be noted on my records. Also, I as told the new Dr ********* 'may not stay long' by the nurse. I could change hospital and find I'd been allocated the same guy - Arggg - The stuff of nightmares!

Re GP, He's the nicest one out of a questionable bunch. Finding one with space around here is not easy.
I am just getting to the stage where I can hardly bear to talk to any of them, you know? but at the same time, I cannot afford private scans etc although have paid for my own blood tests recently Have found if I say 'my consultant said it would be helpful if ' .... GP would offered LFTs and even VL test - However if I ask about anything, it is just poo-pooed. Sexism? Doctorism? My partner says he has never had anything like this and is listened to. I do think they are very set in their ways, in more ways than one. Maybe I should just use this prelude before saying anything.

Treatment wise I will take matters into my own hands, Monitoring wise I will sort it out, somehow - Hopefully!
ps Sorry so long!
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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