Update

Hello All, I still am not being offered any treatment for my HepC, I saw last night on the news, about how the NHS are blocking treatment along with NICE, because of the cost,45 thousand pounds for a 12 week coarse, I dont stand a chance in hell raising that kind of doe.My weight has finally started to stay on, thanx to these nutritional drinks I was able to get a 2 month script for.

Im seeing a NHS Dietian, well a ten minute chat, she was a lovely person to converse with, however she didnt offer me any new insight into how I can boost my diet, other than what I have already found out myself.My local GP couldnt give a stuff, about us recieving treatment, and I dont know when Im going back to Guilford liver unit? Knowbody knows anything, Im always so tired, Im still not getting PIP thats been about 2 an a half months ago, ESA I should hear from by 9th June, until then I struggle on,I hope you are ALL well and ok.

6 Replies

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  • just a quick one go see ur gp and ask for a referral to frimley brilliant hep and liver unit good luck

  • If you contracted your HCV through a blood transfusion from NHS treatment the Skipton Fund may be a way of paying for your treatment...also, you can use template off the Hepatitis C Trust website to write to your MP about this awful situation we are all in who have HCV and waiting the new treatment...cure...for our HCV. I do not know how bad your fibrosis is (Fibroscan) or what genotype you are?

    I would encourage anyone to write to their MP if you are as angry as I am that unless you have £43,860 (the London Clinic) to pay for private treatment...you can just wait in queue with 160,000 other HCV sufferers in declining health. This is just depressing, really!

    hepctrust.org.uk/write-your-mp

    Good luck...

  • I am angry about it, unfortunately I became injected with HepC via a blood transfusion in Italy Roma, when I was under 10 years old, The NHS didnt have anything to do with it, however I do feel largely annoyed by the treatment I currently receive by them, they all act as though, its not them personally infected, so Ill stay away from him.

  • 1a last fiboscan Im not sure on figures, but they said my body was coping well so gave me my next appointment for 6 months later.

  • Check hepcnomads website they are up on trials in uk and can point u in right direction also follow baillie on this forum he just got on the cure I just finished and am clear good luck

  • Hi Simon and sorry you are still battling to get treatment/financial support. I think we have mentioned before that, due to you having depression, it is unlikely you will be eligible for the standard Hep C medication available on the NHS. Your route is more likely to be trying to get on a clinical trial where they are testing HCV treatments that dont use interferon or Ribavirin. Have you asked about clinical trials? And yes, deffo join HepCNomads online forum, its brilliant for advice, support and there are people on there who may know about trials hepcnomads.co.uk/forum/inde...

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