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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
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
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.
LG:
She didn’t say anything else Day 15 today. The Blood tests were done at 7 days.
LG:
She didn’t say anything else Day 15 today. The Blood tests were done at 7 days.How odd! but good
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