Major UK Hospitals that monitor generics

[Dr James]

This list is not complete, but for patients taking generics in and around London the following hospitals are monitoring generics patients:

• St Mary’s Paddington
• Chelsea and Westminster
• Dean Street Clinic
• Royal Free Hospital
• Barts
• Royal London
• St Thomas hospital, Westminster
• Addenbrokes, Cambridge

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YMMV

[LondonGirl]

Interesting. A certain consultant refused to monitor me at the Royal Free and was rather unpleasant about it too. Maybe their policy has changed recently or it depends on who you get to see. A shame, because It’s a great hospital.

There are a couple more that I have heard of, one in the south, one further up north. They say they are doing it ‘quietly’ and ask that I don’t post on any forums, but I can be PM’d on this website should anyone from the UK wish to.

You can ask to be referred by your GP to any hospital under ‘Patients Choice’.

Best of luck to all.

LG.

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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

[fretboard]

”James-Freeman-facebook” wrote:

This list is not complete, but for patients taking generics in and around London the following hospitals are monitoring generics patients:

Great news!! I wonder when the US will grow a pair and do the same? Doctors over here are so regulated, most are scared to care for a patient taking generics, at least mine was. It seems like they would rather have insurance companies pay the big dollars, than give somebody the ok to take generics. Crazy!!

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G1a dx’d in 1992, Biopsy F2 VL 8mill +. Tried tx with Interferon/Riba, back in 2008 didn’t last long it felt horribly ugly!! I stopped tx, after 5 weeks!!
Started tx 6/1/16 with Harvoni.
12 Month Labs= UND

[beaches]

RPA in Sydney Australia will as well. My impression of them is they care about the patients.

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Genotype 1a
Diagnosed in 2004, had HCV for all my adult life. Until 2016!!!!
Harvoni treatment, started 19 March 2016
4 week results Bilirubin 12 down from 14 pre treatment,
Gamma 25 down from 52, ALT 19 down from 63, AST 19 down from 47,
VL <15 down from a lazy 6 million or so

EOT Results
Bilirubin 10, GGT 18, ALT 19, AST 21, VL UND

12 Weeks post EOT
Bilirubin 11, GGT 16, ALT 22, AST 20, VL UND
Cured baby

[akiniai]

Hi everyone!

Does anyone have any experience with a Whipps Cross University hospital?

[Gaj]

Hi LG,

I wonder if since the Barcelona ILC in April and with the U.K. Hep C trust now being more supportive the attitude may be changing?

I understand that Dr Andrew Hill and other respected advocates over there have been actively lobbying too.

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G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND

[LondonGirl]

Hi Akiniai, I’m in the UK and will send you a PM. Try not to worry, things are improving.Look out for a message above right, small blue letters ‘private messages’

Hi Gaj, yes, the HepC Trust are being more helpful recently at last, but the feeling I get is no-one wants real details being posted on forums, as my clinic said to me ‘we’re doing it quietly’ , suggesting if we post too much on public forums, it may hinder the help some are offering.

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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

[rightsaidfred]

Hello Akinia,

You may not need a hospital monitoring service. My GP has been very happy to monitor me and I know of another person who’s been getting the same help from hers.

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G3a. Probably infected 40 years ago.
Diagnosed July 2015
7/7/2015: ALP 69, ALT 209, WBC 5.8, VL 40,000. Fibroscan 9.5 Kpa.
Commenced treatment Sof/Dac (Natco Pharma) 24 wks in Feb 16
VL UND @ 4 wks, 12 wks

EOT 6/7/16
SVR 12
SVR 24

PHEW! Thank you so much Dr James, Monkmeds and all at Fixhepc

[LondonGirl]

Hi RSF That’ll be me
Yes, many GPs do seem to be less restricted and mine has been amazingly supportive too. Having said that, they don’t offer such full testing like the hospitals, but are more frequent in their testing, so having both is the ideal if at all possible .

Hope you’re doing well ?

LG

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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

[akiniai]

Hello rightsaidfred,

The GP clinic I am registered to is more like walk in clinic. They have a few doctors and whenever I need to see GP it is never the same person. They have referred me to do all my tests and treatment in the hospital.
As every time I have to see a different GP it would be so uncomfortable to tell my story to each one of them. I think I should find another clinic and be looked after by one person.

[LondonGirl]

Hi Akiniai, It’s probably a good idea to try and register with a more family style practice if you can? We always see different GPs at ours too, but I ask which day the Dr is in that gave me my diagnosis and book an appointment when he’s next in. Once he was away on holiday and I needed forms for blood testing so had to see another GP, but she was also fine about the tests as my GP had written it all in my notes. I did ask around to find out which Drs were popular and who had been there the longest before I booked her though, sometimes the receptionists can be helpful if you word it right. Mine have been forthcoming as to which Drs they like ! but as I say, I have now built up a good relationship with my GP by only seeing him and he’s been great.

It seems to me, GPs main concern is cost of testing. Liver Function Tesrs are quite cheap, it’s the Viral Load testing that costs. I took Dr Freeman’s GP cheat sheet in with me (above in the drop down menu), some GPs don’t know anything about HepC and are nervous about what’s involved in monitoring and my GP said this was very helpful. He did want me to be under a hospital specialist too though, but once he had one letter from a helpful consultant, he didn’t ask again and has been great.

Have emailed you & will email you again later, I’m confident with a bit of effort you can line up support, although I know finding a local, family-style GP can be tricky these days, especially in London!

One thing I have learned throughout this, is not to be scared to ask any Drs re monitoring you, just need to find one with a ‘duty of care’ . I’ve had 3 hospitals since diagnosis and my GP has been consistant.

My best support however, throughout all this has been Dr Debasis at MonkMed, he’s a star, but can’t order NHS testing, unfortunately. Also Dr Freeman has been extremely helpful and kept an eye on me, all you really need is an NHS Dr for testing as private testing is so expensive , Drs D & F are the ones who really know what’s what and are the best to seek unbiased advise from as they aren’t restricted by NHS bureaucracy.

Hope this helps.

LG

ps A clinical nurse I spoke to told me the hospitals that have permission to run trials are the ones who are generally more free to assist generic HepC patients through their trial status. She told me hospitals had to be approved by pharma to get this status.

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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

[UK_Hopeful]

Hi all,

My mother has been diagnosed with hep C and I am currently buying Harvoni for her through Greg.

I would be most grateful if someone can please provide more info or tips on trying to get her GP or a London hospital to monitor her.

I am thankful for this forum and everyone in it as well as Dr Freeman and Greg Jefferys.

H

[LondonGirl]

Hi Uk Hopefull, and welcome, Please feel free to DM me (direct message in blue righting, above right)

Meanwhile, as above you should download and/or print the GP Cheat sheet provided on this site here :
http://fixhepc.com/forum/forum-gp-cheat-sheet.html

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

[UK_Hopeful]

Hi LondonGirl and all,

Just providing an update, my mother has finished her treatment and her VL is undetected and has been like that from week 4. She is now in followup.

Just would like to thank you and the forum for your help.

[coral]

Hi UK_Hopeful,

I’m so happy to hear about your mother. Well done to both of you – you fought it together and won.
Best wishes for the future.

[Author]

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