“Instead, they did an ultrasound scan (but a very special one, as my NHS Consultant informed me” – Ooh lucky you Alsdad – you had a ‘very special Ultrasound”

and Jolie “what the sick people have to go through to get anything on the NHS maybe the idea behind this is to make it so difficult, stressful & confusing so majority of patients just give up even trying ….?? & go away”

Really, it beggars belief the way healthcare is run in this country.

Alsdad, funnily enough I was just having a good old rant re the NHS and its incredible bureaucracy. It is getting quite frankly ridiculous and putting lives at risks in a variety of departments.
Anyway, will discuss HepC because that’s why we’re here

I can understand that Drs not warming to the idea of patients self-treating and possibly buying from dubious sources,
However, if someone like Dr freeman, a Dr. has organised testing of generic medicines at a reputable lab and the medicines have been deemed legitimate, then there really is no excuse. The total lack of willingness to look into it and the pure stubborn narrow-mindedness re improving the situation by is just plain immoral. Surely, if they communicated with Dr Freeman and with the option of electonic mail (*rolls eyes*) we have these days (uh hello??) a standard letter could be drawn up by Dr F / The testing lab stating the medicines had been tested and they are coming from a reputable manufacturer (or words to that effect anyway) – the very least they could do would be to monitor patients even if they are tied up with the legalities of patents and they can’t prescribe. After all, it is saving money for the NHS patients paying for their own medicines for heavens sake!

With the will and some creative thinking, they could even set up testing here in the UK (uh hello again?) – No. Why? Because big business rules here in the UK, particularly England and shareholders are in high places – I will leave it at that, . They have got the NHS in a vice and they can’t get out.

I also find it totally immoral that they have recently been offering not only Interferon to patients but Boc and Telap. (Yes, indeed). It’s been a while now that they have stopped Boc & Telap in North America. What are they doing, using up old stock? of medicines that can harm patients and cause long-lasting negative health problems that not only reduce the patients quality of life, but also end up costing the NHS more, when there are now better options available? Arggg! Not one dot of a holistic approach – as apparently joint pain, nerve pain, eye problems IBS etc etc are ”not considered connected to the virus’ or the medicines they have been using, even though there are plenty of medical papers written by top hepatologists , gastros and hematologist s saying the complete opposite and are available for patients to read online! We have to learn about this virus ourselves, because no-one else seems to want to acknowledge any of the symptoms we all have in common and most of us suffer that we all discuss on these forums.

Scotland no longer offers Interferon treatments for GT1s – A start at least. Apart from the fact the new treatments are better and more tolerable, Harvoni for Treatment Naive GT1s for 8 weeks is also cheaper than the triple ! – Absolute madness.

Another thing that concerns me, is Drs don’t seem to do much in the way of basic observations eg Pulse, BP, Listen to heart, lungs, look in eyes, reflexes etc any more – Why is that? I have been ‘looked at’ once since being diagnosed 18 months ago and that was by an excellent leading professor of Hepatology who has since retired and who I booked a private appointment with. I nearly cried after that consultation because a medical professional had actually bothered to check me out nearly a year after diagnosis. He noted a slight tachycardia and slightly raised blood pressure noted in a letter to my GP which was sent to a stranger in Wales because the admin in NHS hospitals is a mess. On mentioning to my GP that I’d like him to check my heart out before treating, he told me to ‘go on holiday and relax’. No wonder we are anxious when we go to appointments, we are scared to ask for advise or help re anything! We must remember that many GPs are now shareholders and partners in the surgeries, so financing of tests is a personal concern to them these days. There are many recent articles about how HepC can cause a higher risk of heart disease for example. How many of you have had a Dr listen to your heart lately ?

It seems to me that Drs just aren’t ‘Doctoring’ here in England of late. I know there are some excellent Drs and specialists out there, but somehow they are being restricted and I’ve read some articles which raise this very concern, A recent one was from a cancer specialist who said he felt restricted in trying things that may work when a patient was deemed ‘untreatable’, and felt like he ‘couldn’t be a Doctor’ – but that’s another story.

I have talked to so many other Hepatitis C patients who have become almost phobic about seeing their consultant or GP – Surely this cannot be right? Why has it become like this?

End rant – feel a bit better for it , I think

Big congratulations on your 8 weeks undetected Alsdad and here’s to your consultant for trying to raise the issue.

Alsdad, wonderful news for you and very encouraging for me

Great to hear your positive news Alsdad And I agree with Joy…wouldn’t that be a rather instructive story to get the word out on, considering the state off affairs as it stands for you guys.

well done Alsdad!,
I’m so happy for you & hope you’ll continue to feel better & better once you finish the tx in 12 days,
jolie xxxxx