I don’t live, I exist

The picture across Scotland for those whose HCV infection arose from contaminated blood is one of distrust, disempowerment, emotional turmoil, personal and family tragedy, significant chronic health impairment and serious economic disadvantage.

Here we show some key quotes from the Scoping Exercise and the ‘Living Well’ film

 

 

“Take away some of the tiredness and make me feel normal again.”

 

“Why did it take so damn long to tell me?”

 

“I was never told I had Hep C.  I was asked how I was coping with it at an appointment at a different hospital for a heart condition.”

 

“It is well known that it’s very difficult to get an appointment with a hepatologist even when signed up to one. I only get to see my liver doctor once per year. I make additional effort to have shorter appointments but it isn’t available. The system is overloaded and just doesn’t work.”

 

“I feel like I am treated like a junkie and until I tell the people dealing with me that I got Hep C from CB then they really want to be caring for me. It is also a roll of the dice in which doctor you see as to finding out how far my illness has progressed i.e. cirrhosis.”

 

“My father died 16 months after diagnosis and without even starting treatment.”

 

“I was treated like a leper when I had my baby. After using the telephone, it had an ‘out of order’ sign put on it. I used a bathroom with an ‘out of order’ sign on it – so nobody else would use it – although every other person saw me using it. I was told not to breastfeed my son, 24 hours after he was born and I had already been breastfeeding. When my GP was informed of my diagnosis, he phoned me ranting and raving, demanding that I come to the surgery after hours. He was angry that I hadn’t told him and yet I’d only been told the day before.”

 

“[NHS] Staff need to be adequately trained on issues of Hep C. Not just what it is but important problematic issues on how to improve quality of life.  The new age of hep c is changing and NHS staff are just not adequately trained to help patients.”

 

“During the anti-viral, and for 7.5 years after it, I have wanted to take my life every day.  I struggle to motivate and my energy still vanishes without warning, but I am getting better. I owe my recovery to nobody, because apart from my GP there was nobody.”

 

“It’s ruined my life. Had to tell my boss about my Hep C – Given MENIAL tasks to do in the Office”

 

“Lost out on nearly 30 years of earning ability.”

 

“I was never able to go back to work. I have had severe mobility problems.”

 

“Lost our home as we had to sell it.”

 

“As unable to get any real life insurance our mortgage was not paid off on the death of my husband which means next year I will have to sell our family home as mortgage requires to be settled.”

 

“Now I have to live in one 9’x 8’ room all winter because I can’t afford to heat more of the house. The government won’t help at all. I’ve just been thrown on the scrap heap since I was given this terrible disease!”

 

“I don’t need ‘voluntary support’.  I want proper compensation and I can support myself.”

 

“I was ill with Chronic cirrhosis of the liver and on the waiting list for a Liver transplant. Job Centre Plus wanted me to attend an interview. I under-went a 12 hour liver transplant and I still have Hep C but at least I am still alive.”

 

“After the second treatment was unsuccessful, my husband was never the same man – depression, mood swings and fatigue took over his body, he passed away aged 45. HCV DESTROYED our family life completely.”

 

“I would like there to be an investigation in to every haematologist who knowingly infected their patients. I CAN NAME AT LEAST THREE.” 

 

“I’ve been intentionally poisoned with a filthy disease which doesn’t have the decency to kill me. The government should admit liability & give decent compensation- I’ve lost hundreds of thousands of pounds in wages. I’ve lost time with my children, my grandchildren and all but one of my friends. What’s that worth?”

 

“I can make no plans for my life, I may have shown no indication of the Hep C virus for some time, but I have lost 15 plus years of my life, where I have lived as a vegetable. My potential to create a secure future has been taken from me.  I now have the HCG sword hanging over my head and what did I do to deserve this? Nothing. I took what the professionals gave me.  I am not looking to blame anyone I just need the support that is not there!!!!”