TOPIC:

I wouldn't mind this in my post

I still think you should speak to someone in a Citizens advice bureau they're usually staffed by
lawyers versed in this type of situation.

I'm not shocked the type of Lawyer you spoke too make that statement this is not the type of case they
run with.

I agree Sirchinenge. I'm not sure of the exact legal situation in the UK although likely similar to Aust as most of our laws are based on your model. I very much suspect that the NHS is playing a game of bluff here. But to some extent the argument comes down to how strong the patient is and whether they are able/willing to fight the system or have more user friendly options such as a supportive GP and access and funds for private consultant and/or testing. But supposing they choose the NHS clinic route:

- if someone is already a client of a clinic then I suspect that their consultant is not in a position to deny them access to the services of that clinic. They may rant and rave about it and advise against self treatment as a course of action. They may be able to delay testing, appointments, etc. and frustrate the patient to the point of giving up. But they can't actually deny the patient access and if the patient presents with concerns or side effects that need checking then they have a duty of care to provide that service. It really comes down to how strongly you are able to fight back and how big a pain in the arse you can be.

- I have just read the letter from Alsdad's consultant to his GP and that just further reinforces my views above. At no point do they deny him monitoring although they attempt to imply it. The whole letter is an attempt at instilling FUD (fear, uncertainty and doubt) in the GP and by association the patient. I wonder what would have happened if Alsdad had said "right, yes, I'm taking Sovaldi/Ribavarin as my generic treatment so please monitor me for side effects of that. I'm not too fussed about you doing VL tests but feel free to if you are curious" and then proceeded to take his Sof/Dac "coz I get confused by all these medication names!" They may not have liked monitoring him and I suspect any moral/emotional support may have been lacking.....but they wouldn't have thrown him out on his ear.

I really think the biggest problem here is the stigma attached to hep c and your NHS is playing on that in an attempt to deflect any responsibility. What it probably requires is someone prepared to stand up in court and/or the media and say "This isn't fair!" But I understand how hard that is for anyone to do particularly with the vulnerabilities that this virus causes in us.

Anyway, just a few of my thoughts and I'm not advocating lying about what meds you are on because that is a risky route to take.

G

It is all an extremely grey area to put it midly.

There will indeed be dirty tricks by some, my consultant has just written to my GP saying I have 'no fibrosis' - this is a blatant lie!
That's two lies now He also mentioned that I 'may treat privately' - This letter arrived 2 days before I see my GP. All extremely odd, It really does wear you down emotionally, which doesn't help the stress levels and makes me personally feel ill, probably a bit like any wellfare options here these days like sickness benefit. Our world is changing rapidly.

i also think, what with all this devolution going on here in the UK, that different areas will have different policies in healthcare due to budgets and who's at the head of policy, this is just the beginning of a huge post code lottery.

I agree, Stigma, is very much alive here in the UK, I am absolutely sure of that and have been on the end of it a few times - and no, It's not paranoia. It has taken nearly two years to understand this.

Hi Dan,
I hope that you can have a smoother treatment. Only undetectable!
I started treatment with Twinvir. Waiting to do blood tests at the end of 2 weeks.

Thank you. I hjope so too.

2 weeks in to treatment now.

I got the second good news, first was the start of tx. The virus is dying. The VL just after one week is 29, down from 400,000. The nurse paused on the phone, before telling me the viral load.

I'm going to see my GP on Monday to get more bloods, which will be 3 weeks LFT, FBC and will arrange a private VL to see how it is doing now.

The sx at the moment: Fatigue in the evening, dizziness most days, numbness of hands and legs in the evening. Pulsating sensation only appear later in the evening, when really tired. Sometimes the feeling of fear.

Dan - that's awesome - Well done you !

What else did the nurse say? She must have twigged you're on treatment now?!

Hope the sides mellow out a bit for you soon, how far in are you (sorry I am never good at dates and times).

LG:
She didn't say anything else Day 15 today. The Blood tests were done at 7 days.

The 1b is the easiest genotype. The VL after one week 29 menans that you are now negative.

LG:
She didn't say anything else Day 15 today. The Blood tests were done at 7 days.

How odd! but good

That's great news for you Dan. I'd be astonished if you weren't UND on your next vl test.

That ******g clinic at Manchester Royal! They know you're on generics and they know they're working. But still they stick their heads in the sand! It's just a nasty nightmare that they want to go away, and wake up from. Why wouldn't rational, intelligent professional medics call you back in and find out everything they could?

Reading your stories Dan, LG & Alsdad, just brings home the fact of how lucky we are down under by comparison. Not all of course but many docs (and clinics, or at least certain individual drs in them) are happy to monitor and are taking an understandably keen professional interest. Beggars belief really what roadblocks and downright obstinacy in the face of all logic you must contend with. But I guess such is the scale to which they appear to have been snared by big Pharma. Feel for you guys.

Alsdad - Someone from the hospital rung home yesterday and I thought it is MRI hepatologist or the nurse. This is why I called today, but was told, that they didn't call me.

I thought that they saw the VL result and wanted to bring me back into the clinic, to make sure the result is right.

Never mind, I'll see what my GP will say next week. At least I have the evidence that it is working.

Fantastic news, Dan!!
I think you can say confidently that you've achieved a very rapid SVR.
Panic attacks should dissapeare very soon and energy levels should increase by week 4.
How is your eczema situation?
I'm on my last week of treatment. Dragging my feet and saffering from the back and neck pain. Other than that feel great.

Thanks Nadia.

The eczema improved as well with just steroid creams.

The new sx for the past 2 days is numbness in the evening and the muscles in hand up to the elbows and legs up to knees feel so tight