Here we detail people’s experiences through their own words.
If you want to share your experiences, please get in touch.
Here Ian McPhail, tells us his story and the impact that contaminated blood has had on his life.
My name is Ian. I was born and brought up in Clydebank in a working class family along with my three brothers and one sister. We had a good upbringing in a happy family atmosphere, me being the second youngest. I left school at Christmas 1974 and started work as an apprentice painter and decorator on January 1975. In May 1975 I lost a lot of blood due to problems I was having with my stomach. After being taken to the Western Infirmary in Glasgow, I was losing a lot of blood and bleeding internally and a decision was made that I needed a blood transfusion - little did I know what problems that blood transfusion was going to cause me in future years.
But I got well again, finished my apprenticeship and went on to find a good steady job. Life was good I thought. In 1985 my daughter was born. I was delighted; a beautiful baby, a good relationship and a steady job, I was on cloud nine - what could go wrong? Then in 2003 I had a heart attack which, by all accounts, I was lucky to survive. After about six months’ rest and rehabilitation I managed to get back to work again. I thought “Right that's it, surely nothing else can go wrong for me?”.
Due to the heart attack I was having regular blood tests. Around 2004 I started to take bouts of feeling generally unwell; sweating, shivering, aching bones, very tired, loss of weight and very agitated. So I went to my GP who sent me to our practice nurse for a blood test. It was after this blood test my GP sent for me with the news that my liver count was so high he wanted a repeat blood test as he had never seen this before. He also said my cholesterol was very high. But credit to my GP, he arranged appointments for the liver clinic at Gartnavel and the lipid clinic at the Western Infirmary. At the liver clinic they took a large volume of blood from me, so large I asked the doctor why had the nurse had taken so much. “Don’t worry,” he said, “it’s just normal procedure. Go home don’t worry. We’ll be in touch if needed.” I went through the same procedure at the lipid clinic and after a few weeks my medication for my cholesterol was successfully changed. Still no word from the liver clinic. I thought well no news is good news.
However, due to my heart attack I had now developed chronic angina so it was decided that I needed stents fitted in my heart. At my pre-admission examination I was asked
"how I was coping with my chronic Hepatitis C".
I answered, “I don’t have Hepatitis C”.
I was then taken into a side room and told the result of my blood test at Gartnavel came back positive for chronic Hepatitis-C. Bearing in mind these tests were done in March 2005 and this was now July 2005, this is what makes me think, “was I ever going to be told or was this a hush hush job?”. I know what I believe. To say I was in shock is an understatement. My GP was not told either until I myself found out. After several more tests at Gartnavel I was diagnosed with genotype 1. After a liver biopsy I started the treatment of Interferon and Ribavirin which was to last 49 weeks, finishing in January 2009. Those of you who have been through this treatment will know how horrendous it is. I personally sat in the middle of my living room banging my head with both hands to try and relieve the pain and the shock-like feeling going through my body from soles of my feet to the pins and needles in my head. I actually thought about jumping through the window to get rid of the pain and shock-like feelings. I have been left with chronic nerve and joint pain as a result of this treatment which I am on medication for, for the rest of my life. I was not offered any sort of after care or help after my treatment finished. It was my practice nurse at my GP surgery who noticed a big change in me and got me help. Although this helped a bit, the best thing that happened to me was getting an invite to a meeting with the SIBF.
I’m sure I speak for many of us just how grateful we are that Philip took the time and effort in setting up the SIBF. Although things don’t seem to be moving quickly enough, as a member of the committee I see at first hand the amount of work that is being put in for the benefit of the group. In particular Philip, Roseleen, Andy, Tommy and Gillian - we are all working hard for everyone’s benefit.
Big Dave, who we sadly lost recently, also put a lot of hard work in for the group. When I first came along to the meetings, I had never met anyone else who had Hepatitis-C so you can imagine the shock I had through chatting to people when I learned the amount of people who had lost loved ones to this virus. It’s bad enough losing loved ones through natural causes, never mind to a virus that should never been allowed to happen.
I personally do not know if I will ever get over the shock of being infected with HCV. As I said in my statement to the Penrose Inquiry, I feel I have been given a life sentence. This may seem over the top but it feels like I have been given a death sentence; it is impossible for me to think any other way at the moment. The stress and anxiety I am going through is almost unbelievable. It also causes stress throughout the family. I myself try to hide some information from them to keep them from worrying but they notice the stress on me.
Finally, In terms of the Penrose Inquiry, I’ve got to be careful what I say and think about it. Disappointed and frustrated - that's me being polite about it. I hope these people realise we are the victims here. It’s our lives they are dealing with here. This seems to be dragging a bit.
Was the blood screened?
NO.
Was the blood given to patients?YES.
Yet we, as the victims, are being made to feel guilty.SHOCKING.
Thanks to those of you who have taken the time to read my story.Ian
‘How State infection AND State treatment killed the core of our family’
It is very difficult and such a long story of how infected blood has devastated our family’s lives so I will keep it short.
My husband, a father, son, brother, uncle and family member was just 45 when he passed on. I mention all these people because he was such a big part of so many lives and this is very important. It is still so painful that so many people have been robbed of his presence in their lives.
Davie was a haemophiliac and was infected by HCV virus as a child but didn't find out till 1995.
Although haemophiliac he worked 12-hour shifts to provide for his family, however the HCV treatments changed all that and after two failed treatments, his body was so weak he couldn't work at all. This had a huge impact on all our lives especially Davie’s and his depression became debilitating.
I can’t begin to tell the full horrors of living with this so called stage 1 of the virus and our family’s journey through this nightmare, so I won't even try.
What I will say is I lost my husband of 23 years, my best friend. My children have lost the person who should have walked our daughter down the aisle last year, and who should have been there when our grandson David was born. His own parents have lost their beloved first born, and the rest of the family have lost their gem. Big Davie he was called but this evil virus left him a shadow of the man he was, mentally and physically and so many people’s lives have been ruined through no fault of their own. I believe now is the time for closure.”
I would like people to know that after contracting Hepatitis C from bad blood products given to me by the NHS after an operation, that this would be the start of a nightmare in trying to find a dentist that would take me.
I went to three different dentists and was refused by them all because of their ignorance and tactless manor. This destroyed my confidence, gave me an inferiority complex and led me to become depressed - this, on top of the pain I was suffering at the time, was a lot to put up with. Receptionists would interview me at the desk and anyone who would be sitting near could hear every word that was said; there was no privacy whatsoever and was very embarrassing. At this time of ignorance I would be treated as a drug user or thought of as a prostitute. This all led me to hide at home, and when I built up enough courage I would then seek a dentist by phone so as to evade the surgery ignorance. I have suffered a stigma because of this. Through my phone calls I did eventually manage to get a very nice and understanding dentist but this whole episode has been very demeaning and hurtful, not only to me but to my family. I feel that all dentists should be made aware of this so as to treat patients with this condition with understanding and dignity. After all, this has all been caused through no fault of their own.”
I went to three different dentists and was refused by them all because of their ignorance and tactless manor. This destroyed my confidence, gave me an inferiority complex and led me to become depressed - this, on top of the pain I was suffering at the time, was a lot to put up with. Receptionists would interview me at the desk and anyone who would be sitting near could hear every word that was said; there was no privacy whatsoever and was very embarrassing. At this time of ignorance I would be treated as a drug user or thought of as a prostitute. This all led me to hide at home, and when I built up enough courage I would then seek a dentist by phone so as to evade the surgery ignorance. I have suffered a stigma because of this. Through my phone calls I did eventually manage to get a very nice and understanding dentist but this whole episode has been very demeaning and hurtful, not only to me but to my family. I feel that all dentists should be made aware of this so as to treat patients with this condition with understanding and dignity. After all, this has all been caused through no fault of their own.”
John talks about his experience of the financial impact of dental treatment for haemophiliacs
“Whoever made the decision to charge haemophiliacs for their dental treatment does not know anything about living with haemophilia.
My gums can bleed spontaneously and it seems to only happen during the night. Each time it happens I need to inject myself with factor 8 and arrange an appointment with a dentist. However, because of the dental charges I will not be able to afford to see a dentist every time my gums bleed. Each injection I take costs £1000 and if I don't have my teeth looked after properly I would need an extraction which will result in me staying in hospital for three to four days being injected with factor 8 daily. The costs of this would be huge.
The other problem I have about dental charges is that I cannot find a dentist who will treat me as I have the severest form of haemophilia as well as Hep C. Surely it's cheaper for the Scottish Government to give us all free dental care, which historically we have always had, than to face spending millions more pounds on factor 8 because we can't afford to pay for treatment? It doesn't matter if you are unemployed or work full time, haemophilia has a profound effect on your health.”
Opinion
Richard and Elena Brown express their opinion from Bulgaria.
I would like to tender our sincere appreciation of the sterling body of work submitted by yourselves and the SIBF Board, regarding your recommendations for an improved & fair and final financial settlement for all Scottish state-infected HCV victims.
Specifically, the Press Here Release, Note of Dissent, Detailed Commentary to Financial Group’s Proposals and the Scoping Report Summary.
It seems that a relatively small victim group like ourselves has only a small voice when arguing with the Scottish government for fairness and inclusivity with regard to our avoidable multiple losses and disadvantages inflicted via HCV infection, however I was very impressed by the thoroughness of your and the Board’s approach, and the very comprehensive submissions that you put forward.
My wife and I also recognise the exhaustive unpaid time and selfless dedication that has gone into your and the Board’s SIBF work, and we agree with all of your points wholeheartedly.
The only disappointment we have, is that other Scottish HCV-support groups have not taken a more strong and supportive line in standing up for us all, in our fight for fair and equitable treatment for all HCV victims.
We also hope that your crucial and very valuable work is noted and recognised as the only sensible way forward by other HCV victim-support groups, and we sincerely hope that state-infected victims and those affected out with the Scottish borders can also benefit from your efforts, in their own fights for justice.
I would also add that I was horrified to hear your story at the recorded Holyrood Health Committee’s presentation about Penrose’s disgraceful comments (the ‘feather duster’ nonsense).
I think that if he was forced to live for even one day with the terrible effects of HCV and the legacy of the awful interferon-ribavirin treatment, then his story, opinions, and findings would have been far different.
With disgraceful statements like that, (made by a Lord, no less) it is no wonder that the whole ridiculously expensive report was a white-wash, and the ‘Maxwellisation’ cover-up was yet another total disgrace.
I can only hope that the SMP’s took note of his embarrassingly shameful behaviour.
On another note, I was in touch with Victoria Prouse (Director of Operations) of Caxton last week, and she said that she has no idea when any payments or money transfers to victims will be made, at all. She suggested that I write to Holyrood myself. With this in mind, I enclose a letter that I sent to Mark Taylor of Scottish SG news Government website (no reply as yet).
I have also written similarly to Skipton about possible payment timeframes, but have not had any reply yet either.
It seems unfortunately, that very little if anything, is in the immediate pipeline, and I just hope they are not dissolving all the financial support ‘pseudo charity’ NGO’s before setting anything new up, but we shall see.
I also remember when I inquired a year ago, that Caxton, (as an example of only one support NGO) cannot take budget surpluses or underspends over to the next year, from the previous financial year.
So maybe they are trying to save the UK exchequer money by delaying action and/or putting a hold on making any payments for the foreseeable future.
Very best regards, and our thanks to you all.
Richard & Elena Brown, Nedialsk (Bulgaria)
Richard & Elena Brown, Nedialsk (Bulgaria)
So very sad to read your story Ian, my heart goes out to you. My husband was given infected blood in 1981 whilst in the Intensve Care Unit of Ninewells Hospital, only to find out 23 years later he had Hep C , which came as a total shock to us – didn’t even know what Hep C was at that time. My husband received the Interferon & Ribavirin treatment for 12 months but sadly died in 2007 – his liver was obviously wrecked with the Hep C. Absolutely shocking that this was ever allowed to happen. I send you my best wishes
Dear June Falconer.
Thanks for taking the time to read my story .I am very sorry you lost your husband to this horrible hep-c virus .My god its hard enough losing a loved one to natural causes ,never mind a horrible virus that should never been allowed to happen in the first place .I to went through the same horrendous treatment as your husband which has made me even worse with all the side effects it has left me with but you will already know this after watching your husband going through that horrible treatment when I read your reply to my story I am not afraid to admit I shed a few tears for you and your family and of course your poor husband .June I hope I haven’t upset you or your family by sending this message to you all, I am going through a wee bad patch health wise just now but getting a bit better day by day still waiting on some test results to come through. June I hope you and your family are all keeping well and hope I haven’t upset any of you. If it is okay with you and your family I will keep in touch now and again to see how you are keeping and any news I have about hep-c.
Best Wishes and Take Care
Ian McPhail
Thank you so much Ian for your kind words. Sorry for the long delay in replying but I only just happened to see your reply tonight! I don’t often check out this site I am afraid. I sincerely hope you are feeling a bit better than when you wrote to me in June. Is there no new treatment they can give you Ian to help you? Life is so cruel isn’t it. I hope your wife is coping okay. You will no doubt have grandchildren now if your daughter was born in 1985!! I hope you are all well. Take care. My Kindest Regards.
I sent you a reply Ian – did you ever get it? I am not very au fait with computers, perhaps I pressed the wrong key. It’ll be in cyber space somewhere maybe.
Hi June,
Just got your email thanks for replying hope you and your family are all well, keeping a lot better myself now. My family are all well and yes two grandkids to keep me going. Just waiting for word when the next meeting of the SIBF is should be soon will let you know how it goes. Well that was nice of you to reply and i will definitely keep in touch with you.
Regards Ian
Hi June,
Just a few lines to wish you and your family a happy new year. Hope you and your family are keeping well i know this is a difficult time of year for you all. I will stay in contact with you regarding SIBF meetings.
Take Care
Ian
I got Hep C in 1982 after a blood transfusion I had to have after the birth of my daughter. I had a liver transplant in 2009 and while waiting on the transplant l developed Hepatopulmonary Syndrome which affects the lungs {caused by broadening of the blood vessels in the lungs of patients with liver disease}. After my transplant my breathing got a bit better but in 2011 my breathing started to get bad again and in 2014 I was told through the Hepatopulmonary Syndrome I have now went on to develop hypertension and fibrosis of the lungs and without a lung transplant I will die in a couple of years. However, the three years I went without knowing what was wrong with me I started to put on weight – the less I could breathe the less I could get about so started to put on a lot of weight. Now I have been told if I can’t lose three stone in weight they won’t consider me for transplant and as you can understand without being able to get about it is going to be hard to lose the weight that could help me by giving me gastric surgery but won’t.
I lost my son five years ago in a tragic road accident and lost a daughter nine months ago in tragic circumstances. Now my other two daughters and son face the thought of having to lose their mum at the age of 57 all because of the deadly virus I got through NHS blood.
Under the circumstances I think I deserve the right to have the gastric balloon operation that they give to morbidly obese people who have caused their own weight problems so that I can get the transplant I need to save my life and stop my other children having to go through any more misery.
How can I convince my doctors to give me the help I need?
Can anyone reading my story help me or tell me what else I can do? After all, my health problems have all been caused through the blood transfusion I had in 1982 after the birth off my daughter, that was supposed to save my life, not give myself and my family years of ill health and misery.
Yours Agnes
Hep C victim off of NHS.
I assume you have applied to the trust set up by the HNS for people who contracted Hep C through contaminated blood products. it is an immediate £20,000 then another £50,000 for the severity, plus £15K a year to live on. I cant off the top of my head remember the name of the trust, brain fog, Ask consultant or check on internet. ASAP
Sorry about the spelling in my last email, that’s predictive speeling, I should have read through the email before posting. I hope you can read and understand what I have writen, sorry.
Kind Regards,
Agnes
I would also like to mention that I lost my husband in 2002 to the Hep C virus which he got from me. He died from multiple organ failure at the young age of 39 years.
If I knew I had contracted this deadly virus, his death could have been prevented. But with no one getting back to me and letting me know that they could have this deadly virus, you share things like tooth brushes, tweezers, scissors and all sorts of things with your partner thinking it is safe to do so, not knowing that doing these things with your partner that you have actually caused his death.
So I more or less killed my husband and my kids’ father all because of a blood transfusion I had to have seemingly to save my life and by giving me the transfusion I went on to murder my own husband. I have to live with that, and my poor daughter who I had at the time, blaming herself for being born and me telling her how precious she is to me and not to be so silly. She and her sisters and brothers are the best things that ever happened to me I wouldn’t change any of them for the world.
Agnes
Hi my son who is 34yrs of age and has been a renal patient from birth multiple blood transfusions and had 2 transplants was diagnosed in September 18 with cirrhosis of the liver enlarged spleen caused by Hep C which has left him totally bed bound and needing round the clock care
I’ve had to give up my work to care for him in our home
He finished his 16wk course of Maviret but after weeks is still the same extremely jaundice no appetite and every movement is exhausting
They are going to do more tests as they think he has cirrhosis
Someone advised us to apply to the skipton fund as all his blood transfusions were given between early 1984 and 1997 and this is the only possible way he could of been infected
The doctor up at the hospital is dragging his feet about filling in the form looking for evidence saying a lot of the evidence would be destroyed now
It’s just so frustrating
You feel as if your to blame