Home Forums Main Forum Patient Stories ‘In which LG seeks Redemption & makes new friends’

Viewing 15 posts - 241 through 255 (of 523 total)
  • Author
    Posts
  • #12198
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Thanks Ariel ,
    Results will be delayed as I haven’t even had them taken yet!
    A long story involving the usual NHS bureacracy, a very rude medic and an upset me.
    Got a cab there, wrapped up warm & everything due to recent chest/sinus infection and they rudely refused to take them even though I had the signed forms from GP.

    There’s more, but I am so fed up with this kind of thing locally, the rudeness is what gets me! It is what it is, try again next week!

    Could get it done at GP surgery, but the last 2 times they had trouble. Pre Christmas bloods left me with a huge painful lump in vein and black & yellow painful bruise about 12″ long for 2 weeks! which is why my GP sends me to have bloods taken at the hospital. Oh well, it is what it is!

    Glad your BP is calming down :-)
    Sending #love 2 U across the miles


    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

    #12207
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    I am really speechless to hear this LG. I remember on that day it was bone-freezingly cold and I spent the whole day indoors. I thought about you having to travel to get your bloods done in that awful cold while feeling sick and miserable, but I figured at least you were getting them done properly in a good place. I find it beyond the pale that they turned you away.

    The trouble you had after getting them done at the GP is, IMHO not acceptable. I actually had, for the first time, a lump on my arm from recent bloods and I can confirm that it was from a needle that was too big and there were 5 large tubes to be filled. Thankfully I had drunk my pint of water beforehand so the blood came out ok, but I didn’t expect the lumpy bruised arm afterwards. This particular blood service does not use butterflys so I couldn’t get the small blue one, which always works fine for me.

    Jeez, I don’t know what you do now. This really is a sad indictment on the quality of the services available in the UK.
    dt

    #12216
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    thanks dt, It reminds me of the train companies after privatisation, too many different companies not knowing what the others are doing and no common IT system. A mess.

    I typed loads then lost it as page froze, so I’ll keep it short(ish!), but will tell you this, I said to mrs Bolshy bad mood ‘Are you saying you won’t take my bloods’? Her answer ‘ Yes… (shouting) Next! ‘ – I was dismissed. You could see shecwas enjoying her power trip.

    Her excuse was that although I had all the necessary forms signed by my GP with info on etc etc He hadn’t written a letter too. Ridiculous, I’ve never needed a letter before! (a few weeks ago) – The previous phlebotomist said I was entitled to have my bloods done there if I was ‘difficult’ as did my GP. The thing is, that medic could have called my GP surgery and got them to fax a letter over, but she just refused to engage with me any further. I called him and he suggested this other place (a privately run phlebotomy place that NHS patients can be referred to) . I wisely rang them the next day to check I could come in, usual abrupt manner and said no, we shut at 11.30 am and are overrun. Maybe the Gvt just want us to pay? So bad is the service. I would, except the last time Ai did that it took 2 nurses and a Dr an hour to get any blood out by way of a drip, squeezing the blood out with their hands and I didn’t really fancy that either! At the hospital, they don’t have any problems, took 30 secs last time (a few weeks ago!) Also at the hospital wherecI see my consultant, very quick, painless and no mark. What is it with my home area?!

    I guess Monday morning, long cold journey at 7.30 am iand hope – basically.
    Yesterday was end of week 6, lasts bloods were week 3.

    What a total palarvar mate hey?
    ps It’s all going in the Big Blue Book!

    LG


    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

    #12217
    Avatar photoChejai
    • Guardian Angel
    • ★★★★★
    @chejai

    God, LG I can’t believe the BS you have to go through! So, they refuse to do your blood because you’re sick? Or it was on a different path request form? I remember when I used to travel down to the Public Hospital for my Clinic sessions and they’d send me off to their Path dept, sometimes the line was so long and I’d have to leave to get my special bus service back to the island – otherwise I’d be stranded. But of course the Path clinics wouldn’t accept that form; thankfully my GP (my ‘old’ one) would copy the request onto another form. Not something I could get done by the ‘new’ GP – that would be the on who refused to do ANY blood tests relating to my HCV Tx. :angry:

    Being sick and having to go through that and come home with nothing and knowing you have to go through it again is bad enough BUT when you have unacceptable RUDE behaviour thrown at you and replaying in your head just makes it all so much more upsetting and draining.
    Honestly, I’m reminded of the Posters in these depts about not ‘tolerating rude or abusive behaviour from patients..’ Well, I’d like to have a T-Shirt with some sort of slogan saying,”Rude, Abusive and Judgemental Behaviour from Staff will NOT Be Tolerated and WILL be Reported!”

    I feel for you, sending you Big Warm EHugs and lots of #love #love from Down Under :)


    QLD Australia ☀️
    G3a HCV 35 yrs Tx naive
    Started Sof/Dac 13/01/16

    Dec ’15
    AST 70
    ALT 89
    GGT 124
    Fibroscore 8.5
    F1-F2
    13 Feb’16 VL UND #woohoo!
    AST 24
    ALT 26
    GGT 50H

    #12237
    Avatar photoflyingfox66
    • Guardian Angel
    • ★★★★★
    @flyingfox66

    Shocking!! You must have the patience of Gandhi not to have a melt down.
    I feel very spoilt by my GP who is the best blood taker in the business. For the last couple of decades he has been painlessly extracting my bloods. He is such a lovely man. The secret to finding a good Hep GP is to look for a gay HIV expert.
    I feel almost guilty for two timing him with the lovely GP lady who is trained in the Hep meds, but she is willing to prescribe for me straight away. And then there’s my specialist who is also adorable! Actually he only immigrated from London last year so you have lost out there big time. Perhaps thats what everyone should be doing.
    Chejai if you ever need a doctor in Brisbane, I will send you some recommendations.


    F49HepC25ysGT1a
    mild”

    #12238
    Avatar photosplitdog
    • Guardian Angel
    • ★★★★★
    @splitdog
    Chejai wrote:

    God, LG I can’t believe the BS you have to go through! So, they refuse to do your blood because you’re sick? Or it was on a different path request form? I remember when I used to travel down to the Public Hospital for my Clinic sessions and they’d send me off to their Path dept, sometimes the line was so long and I’d have to leave to get my special bus service back to the island – otherwise I’d be stranded. But of course the Path clinics wouldn’t accept that form; thankfully my GP (my ‘old’ one) would copy the request onto another form. Not something I could get done by the ‘new’ GP – that would be the on who refused to do ANY blood tests relating to my HCV Tx. :angry:

    Being sick and having to go through that and come home with nothing and knowing you have to go through it again is bad enough BUT when you have unacceptable RUDE behaviour thrown at you and replaying in your head just makes it all so much more upsetting and draining.
    Honestly, I’m reminded of the Posters in these depts about not ‘tolerating rude or abusive behaviour from patients..’ Well, I’d like to have a T-Shirt with some sort of slogan saying,”Rude, Abusive and Judgemental Behaviour from Staff will NOT Be Tolerated and WILL be Reported!”

    I feel for you, sending you Big Warm EHugs and lots of #love #love from Down Under :)

    It’s stuff like this and what London girl says that makes me wonder how anyone could be for socialized medicine.


    splitdog@roadrunner.com

    Genotype 3
    VL 4,100,000
    ALT 101 AST 71
    Treatment Naive
    Started Sof/Dac Jan 12, 2016
    VL= <15 4 weeks in. AST/ALT normal.
    VL=UNDETECTED 8 weeks in.
    SVR4= Virus back. 3,300,000

    Started generic Epclusa Sep. 23, 2017

    4 weeks in <15 *Detected.
    12 weeks in <15 *Not Detected.
    16 weeks in <15 *Not Detected.
    Finished 24 weeks treatment 3-17-18
    SVR5 <15 Not Detected.
    SVR 20 <15 Not Detected.
    SVR 44 <15 Not Detected.

    Thank you Jesus.
    Thank you Dr. James

    #12239
    Avatar photoflyingfox66
    • Guardian Angel
    • ★★★★★
    @flyingfox66

    I’m totally for socialised medicine!
    I benefit from it hugely. It’s always been there for me.
    Sounds like the NHS is being killed off, which is why its really hopeless now.
    Its still a great idea, and one that defines civilisation.
    This is why we are getting treated here in Australia.
    Yay for socialised medicine!


    F49HepC25ysGT1a
    mild”

    #12241
    Avatar photosplitdog
    • Guardian Angel
    • ★★★★★
    @splitdog

    If the government provided free steak dinners, I’m sure they would be the best, huh? Haven’t you read about LG’s troubles? Ask any veteran here in America how well they are treated. The DMV is bad enough. I would NEVER want my government making my health decisions. Wow.


    splitdog@roadrunner.com

    Genotype 3
    VL 4,100,000
    ALT 101 AST 71
    Treatment Naive
    Started Sof/Dac Jan 12, 2016
    VL= <15 4 weeks in. AST/ALT normal.
    VL=UNDETECTED 8 weeks in.
    SVR4= Virus back. 3,300,000

    Started generic Epclusa Sep. 23, 2017

    4 weeks in <15 *Detected.
    12 weeks in <15 *Not Detected.
    16 weeks in <15 *Not Detected.
    Finished 24 weeks treatment 3-17-18
    SVR5 <15 Not Detected.
    SVR 20 <15 Not Detected.
    SVR 44 <15 Not Detected.

    Thank you Jesus.
    Thank you Dr. James

    #12242
    Avatar photoflyingfox66
    • Guardian Angel
    • ★★★★★
    @flyingfox66

    They don’t make my decisions.
    They give me very cheap contact with excellent doctors who advise me, and also subsidise most of my tests.
    The beauty of the public hospital system in Australia is that it attracts people who really want to make a difference.
    I suppose its a culture gap, because there couldn’t be two more different systems than Australia and the US.
    The UK…well I think many many people there will fight to save the NHS.


    F49HepC25ysGT1a
    mild”

    #12248
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Thank-you all for your support. It wouldn’t be so bad except for 2 things.
    one is, I have experienced this kind of thing so many times and it wears you down, especially when ill.
    Two, I had already delayed getting bloods done because I had a chest infection & my GP told me not to go out in the cold (our coldest spell this winter here in the UK) . There’s a biting wind, not good for chest infections! I had a low fever for 2 weeks.

    TheNHS has been brilliant until recently. This Gvt have an idealistic plan to ruin it so they have an excuse to privatise.
    We will be left with a substandard skeleton NHS which only the very poorest will be able to access with very long waiting lists if it carries on.

    My concern is that our age group, especially those who have a medical history of a chronic condition, will not be able to get affordable insurance, so where will that leave us?

    I am so pissed off re blood test delays, not so much FBs although I am a bit interested in CR&e and white bloid celks, but VL !

    My GP is lovely and very supportive but also v busy, he probably can’t keep up with all the latest changes made bu DOH and this Gvt and outsourcing of publiic services to private with new rules for each different one like the rest if us. He had filled in the usual forms & printed for me with his details & surgey, my details , the test details etc etc So now he, a busy GP has to write a letter too? Waste if GPs time and more paperwork, madness. I know GPs are getting very fed up and so oyr our junior Drs who have been on strike for the 1st time in 40 years and are leaving the NHS in droves. The Gvt have also taken away training grants for nursing. What we have held so dear since the days when you died if you couldn’t afford medical help (my grandma’s era) is being slowly eroded away.

    I am trying not to let them upset me too much, they have managed tonso many times before, but it us hard! I think it’s the total rudeness and abusive attitude that really gets me, I mean, bureacracy there may be, but why take it out on a sick patient???

    Here’s to more success without incident next week and no doubt another week waiting fir my VL result (Grrr)
    Love to all #love

    ps I should point out, that we all pay into the NHS


    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

    #12250
    Avatar photoflyingfox66
    • Guardian Angel
    • ★★★★★
    @flyingfox66

    When these privatisation nightmares happen, everyone suffers because only sadists can work under such conditions.
    I think you are very strong to get through everything you have described and I am very angry on your behalf and for all the other people who have had bad experiences.
    I am also very sad about Britain, and not just because of the NHS. Its really grim to watch.


    F49HepC25ysGT1a
    mild”

    #12253
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    My concern is that our age group, especially those who have a medical history of a chronic condition, will not be able to get affordable insurance, so where will that leave us?

    On the subject of insurance in the UK, firstly as you say LG, we all have to pay into the NHS. There is no opt-out. So money for any private insurance has to be found on top of that. Next, even if you are healthy with no existing medical conditions, private health insurance without the cost of drugs that are self-administered at home – will cost you. Most insurances are designed so that you can get the basics only, or you can pay for each service on top of that. To make it affordable for many, you have to choose a high excess (copay), a low allowance for out-patient services, a wait time of several weeks to see if the NHS can do it first, etc. etc. to the point where you end up with something not much better than being on the NHS anyway.

    So, those on the basic package will only benefit if they have a truly unforeseen medical disaster which requires hospitalization, or they develop a serious condition like cancer. And they’ll still have the big excess to pay every year of the illness.

    In other words, private medical insurance in the UK is not really the answer to your medical requirements unless you can pay for the deluxe package. An alternative for day-to-day needs is a private GP who will also cost you an arm and a leg but will get the job done for you on an a-la-carte basis in a way that your NHS GP won’t. Either way you’ll have to pay for your own meds unless your NHS GP will agree to convert your private prescription into an NHS prescription. I’ve heard reports that some NHS GPs are refusing to do this on grounds of various ridiculous excuses.

    I’ve looked into all this, believe me, and talked to a lot of others who are likewise wondering as they get older what their options are when it comes to getting the medical care they might need. Conclusion – if you don’t have a lot of dosh, god help you.

    dt

    #12259
    Avatar photodointime
    • Guardian Angel
    • ★★★★★
    @dointime

    The secret to finding a good Hep GP is to look for a gay HIV expert.

    Very good suggestion FF.

    Made me think of this. Some hospital departments in the UK dealing with hepC are ‘Infectious Diseases’. Others are ‘Gastroenterology’. I’m taking a guess here based on my own limited experience but I think that the Infectious Diseases departments might be better with bloods and also at dealing with the stigma attached to HIV and HCV. So possibly a less harrowing experience. Worth a try anyway.
    dt

    #12286
    Avatar photoflyingfox66
    • Guardian Angel
    • ★★★★★
    @flyingfox66

    Yup DT, they are also experts are writing scripts for imported meds. Mine didn’t turn a hair when I asked him to write me a script for generics. In fact it was him who first alerted me to the possibility. And it was him who chose my specialist…as it turns out with very good taste.


    F49HepC25ysGT1a
    mild”

    #12428
    Avatar photoLondonGirl
    • Guardian Angel
    • ★★★★★
    @londongirl

    Hi all, Today I continue the fight to get my bloods taken at my local hospital where the woman who runs phlebotomy is a Queen Jobsworth. I shall let you know how I get on.

    Week 7 and no bloods taken since week 3.

    Not amused. :evil:

    Love to all, LG

    ps I have a lovely patient advocate on my case & am complaing to PALS


    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

Viewing 15 posts - 241 through 255 (of 523 total)
  • You must be logged in to reply to this topic.