How has your experience with the healthcare system been?

[CalvinHU]

Do you feel that your doctors have understood your options and needs?

Share your experiences and interact with other members in the comments below!

[Chefkarl]

No way. Not in the slightest. Both God3i have had and the specialist I have seen have been crap and very dismissive basically telling me it's down to me to stay healthy! No info really given. No support offered. So No!

[Londongal]

Hi everyone, actually I have been so lucky with my health care team.They were there for me from my diagnosis, regular check ups, including scans, bloods etc. over many years. Sure, there are times they don’t get it, and some can be a bit dismissive of symptoms and side effects, but I’m very happy with the care I have received since my diagnosis, with both my Hep C team and others that helped me with other issues because of the virus.

I will always be thankful to them & the N.H.S

Best wishes. K

[Tess74]

I changed hospital, at the first hospital the registrar who saw me kept insisting I had caught hep c via sex and kept going on about the importance of condoms....I was fuming so changed hospital, all the nurses at the 2nd hospital where very nice and friendly etc however I had some issues with being sent someone else discharge papers and also when I went to start treatment the first 2 week supply was 'out of date' medication...and this was for the new drugs, so I haven't exactly had much confidence in any of it if I'm honest

[Dandelion_1 in reply to Tess74]

Good on you for changing your hospital. Even with another wait for a new appointment, it's not worth staying at a hospital that drains confidence at what is already a very worrying time.

[SimonHM]

Yes, I was extremely lucky that my HCV Consultant & my HIV Consultant and my Psychologist worked as a team. And understood my concerns and worries. and even pushed for treatment due to phycological grounds rather than just physical grounds.

[Sillysausage234 in reply to SimonHM]

Your right Simon to get the best treatment plan and options,you have to become an expert in your illness and be able to manage the appointments,or get a few people on board to push your case forward.my g p got me a psychologist appointment but she didn't offer much help she told me to keep feeding the birds in a morning .

[SimonHM in reply to Sillysausage234]

Sorry to hear your psychologist has not helped. I have had some excellent support with the whole Mental Health team based in my HIV clinic. If it wasn't for my first Psychologist pushing for me to get Havroni, I might still be waiting to get treatment for my Hepatitis C.

[Sillysausage234 in reply to SimonHM]

Hi Simon ,im fortunate to have a good respiratory nurse who comes out to me I had just about had enough, but she is pushing the consultants to get me sorted,im nearly finished the epclusa,got 8 wk appointment tomorrow ,so 4 weeks left,I do feel better ,stronger,and more energy,having some real dark moods though,but only for short periods are you discharged from hep c hospital now ?and have you any scarring on the liver?i think a fibro scan is next for me but I suppose once the virus is gone your on your own and have to eat well and look after the liver the best you can...

[SimonHM in reply to Sillysausage234]

Am glad you have some good support. Hang in there. Well yes, I was discharged from my Hep C Consultant. but as it was in my HIV Clinic, they keep an eye on my Liver & Kidney functions.

I have had a fibroscan and have no scaring. So am lucky.

[Dandelion_1]

Overall, my experience with the healthcare system has been difficult and stressful. After the GP diagnosed Hep C, I was referred to my local hospital and arranged the first available appointment, 6 weeks away. My questions to the GP in the meantime went unanswered with replies of "I don't know anything about Hep C" and "Just wait for the appointment with the consultant".

The appointment with the consultant was a series of questions basically about how I might have contracted the virus (which I later found out was an irrelevant question) which I felt was very intrusive. The point I decided that I couldn't continue with this consultant was when he asked me if I had had any tattoos. I said no, as I haven't. He then tilted his head, looked over his glasses and said "Are you sure you haven't got any tattoos?". Very odd behaviour.

I told the GP about this and that I had also found out that this local hospital had no specialist Hep C nurses or consultants. I had been referred to a gastroenterology clinic. I requested a referral to a specific hospital with a Hep C specialist and a Fibroscan, a rarity at the time. This meant a 4 hour round trip (all within London) but I was desperate to find out how my liver was and to get a prognosis and possible treatment. The wait for this appointment was another 6 weeks.

I knew a lot more about the virus by the time I saw the new consultant. My anxiety and fatigue was off the scale by this time. I did get the Fibroscan and was relieved to be told on the spot that the damage was mild. Over the next five years, I attended this clinic every six months, waited, weighed and blood pressure taken by a different nurse each time (in front of everyone else in the waiting room ... ugh ...), waited, saw a different registrar or student on all of the visits, same treatment offered (Interferon and Ribavarin which I couldn't do) then up for blood tests afterwards and so it went on. I didn't have any "team", support was only offered to those on the treatment. It was usually a long wait (4 weeks quickest, 3 months slowest) for the blood test results and letter to come through. A ridiculous system and patients felt left on a constant conveyor belt but going round in circles. Watch and wait can be torture!

The fantastic staff at the Hep C Trust were my saviour throughout these 5/6 years, at the end of a phone when things got desperate, to sound off after a bad appointment and to gather the vital up to date info from people who had all had experience of the Illness themselves. Support groups, talks, workshops and social events were offered by the Trust and I could attend some of these as I live in London.

Six years after diagnosis, my treatment during the clinical trial was "Premier League" once I had pressured the consultant to put me forward. Put on the trial short notice, screened quickly, all appointments set a the beginning, no waiting, straight in to see the doc, three or four consistent staff involved, greeted by name and with smiles, asked chatty questions, monitored regularly, at the end of a phone if I had any questions or called back within minutes, results within a few days and a feeling of real interest.

I don't know if it would have been the same if I had got treatment on the NHS. I hope it would. The drug company wanted the best results from their trial, for people to stick to the rules of the trial and these trials raise a lot of money for the NHS hospitals where they take place. The clinical trials staff's jobs are dependent on success. Even though I knew I was a guinea pig, I felt I was treated well. It was successful for me.

A long reply but I hope this is of some help to someone!

[cyclegal]

To be honest, I found them to be very helpful. My liver function tests were coming up normal but my consultant prefers to do liver biopsies. I went with his advice and had one and it showed I had cirrhosis so I was started on the treatment pretty quickly after that. My clinic nurse was wonderful. Whatever I wanted to know I was told about and all in all I was happy and have nothing to complain about.

[Sillysausage234]

Healthcare staff do an amazing job I've found,in the main the ones you get to see. It depends where you are regionally ,I think.we have to be thankful we have the NHS..