Insult to injury: ‘It is reprehensible for the Secretary of State to insist that any compensation has to be agreed by the Assembly’
Leona O'Neill meets the Haemophilia NI chair Simon Hamilton, one of almost 5,000 haemophiliacs given blood contaminated by HIV and hepatitis C in the 1970s and 1980s
Simon Hamilton (58) from Co Antrim, is chairman of Haemophilia NI.
He contracted hepatitis C after receiving contaminated blood transfusions in his early 20s. Simon and his twin brother Nigel were among almost 5,000 haemophiliacs who received blood contaminated with HIV and hepatitis C in the 1970s and 1980s.
Today Simon, who is married to Olive and has one son, Ethan (24), lives with cirrhosis of the liver and must be tested every six months to determine if he has cancer.
Q. You are a haemophiliac, how does that impact on your life?
A. I have got what is called Mild Haemophilia A.
I lack a clotting factor in my blood. The likelihood of me bleeding is considerable.
I have about 10%-12% clotting factor instead of 100%. Therefore the risk of bleeding in joints, the risk of bleeding from bruising in muscles, the risk of internal bleeding - I try and avoid these because they can lead to joint destruction and internal bleeding and more serious things. It can be fatal at times.
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I don't play contact sport. From an early age my parents encouraged us to keep fit, as it would enable us to be stronger and build some strength against the risks.
I row and I have always rowed. It has been a great benefit to me in terms of keeping me strong and healthy and fighting the risks.
Haemophilia is something that you absorb and try to live with. But there are times when you do worry, if you have a problem - like, for example, with the hepatitis virus, or with the destruction of your liver.
And you worry about it if you have internal bleeds or a bad knock.
Q. How did you come to receive infected blood?
A. We have special concentrated treatments, the plasma or blood from thousands of litres, and they take the factor out of those, and they produce concentrates which you are injected with.
The substance in the injections strengthens the coagulation of your blood, so it brings my coagulant up to 100%. It lasts for two or three days and you have to inject yourself again.
I was infected while I was getting treatment for an internal bleed on my thigh.
As a result of that I had to get injection treatments and in that was the virus hepatitis. I was in my mid-20s when it happened.
I was being monitored by the hospital for around 10 years and it became apparent that I had hepatitis. Apparently it had been known for around four years before they told me I had it.
In a sense I felt like I was the last to know, because everyone else did. And if you don't know what is in your medical records, you are not aware of it.
But it was clear from my medical records that they were very much aware of issues before I found out.
When I got the diagnosis I was extremely worried and concerned about the consequences.
I sought as much guidance and advice as I could get, which there wasn't much of.
It was just something that all of a sudden burst forth in lots of haemophiliacs. It appears that between 90% and 98% of haemophiliacs who were exposed to the virus ended up getting hepatitis C and then from that a number of people go on to get cirrhosis of the liver. I developed that.
I have to have my liver checked every six months in ultrasound to look for anything of concern - because they are looking for a cancer tumour.
Q. How does hepatitis C impact on your health and life?
A. It makes you very tired, you have cold sweats, it makes you feel like you have the flu. Your memory goes a little bit and people have a variety of reactions to it on top of that.
I went through two treatments to cure me of the hepatitis. They are very severe, they are almost like a chemo treatment.
They kill your immune system and they give you these injections which actually suppress the virus. The virus sort of goes to sleep and if it stays asleep after the treatment, hopefully it won't wake up again.
The first time I had it done, the virus reappeared. The second time it stayed asleep and thankfully it is still dormant.
But I have cirrhosis, which is a direct result of hepatitis.
My twin brother (Nigel) is in exactly the same situation, only he was infected earlier than me. And he got cirrhosis and ended up with cancer and had to have a liver transplant a year ago. He has made a wonderful recovery, and is a very, very lucky man to still be here.
We have heard from people in the inquiry who have had more than one liver transplant, as the virus is still in the system and in the blood and attacks the second liver.
Q. Is the threat of liver cancer always hanging over your head?
A. Yes. Every six months I go for a scan and they do tests and if they see anything in the scan, I would have a MRI.
They have discovered nodules in the past. But they are always looking for a tumour.
I had a brain haemorrhage a number of years ago.
They believe that because of the severity of the treatment for hepatitis, people react in different ways.
Some people get diabetes, some people end up with higher blood pressure. And there is a belief that there is a connection with my second treatment and my brain haemorrhage.
I came close to death there. I thought I was a goner. I was in intensive care for a long period of time and the medical staff did a great job of getting me back up to where I am now. Dr Gary Benson has my eternal gratitude.
It changes your perspective on life.
Q. Such near death experiences must surely make you ponder your own mortality?
A. They very much do - when you think that you are going to die and you have to decide whether you are going to make your peace or not. I did at that stage make my peace and was prepared to die. But thankfully I am still here.
My situation makes me feel differently about life and death.
I am 58 and I have got used to living with these things. But there are times when you wonder whether or not you are going to be still here.
But I live my life with the glass half full, so I am a battler and a fighter. I stay positive and I'll never be otherwise. I have a very strong faith.
I have very good friends and family and we are all very strong together. And my colleagues at work are extremely supportive.
I can't complain. That is my lot and I have to get on with it. I have accepted my fate. It is what it will be.
Q. A journey like this would have a huge impact on your family. Tell me about that.
A. It has had a huge impact on my family. They carry the worry. They worry every six months about what the next test is going to bring or when you have other complications or other bleeding episodes and what comes out of those. It's the worry about what way that will leave you.
When I had the brain haemorrhage I saw my wife crying in the arms of her friend at the hospital and I realised that it was bad.
But my wife Olive is very strong and she keeps her problems and worries to herself. She doesn't let me see it very often. But seeing it this time made me realise it was bad.
My son constantly monitors me and is very, very caring towards me.
It has had a huge impact on their lives also.
Q. You say that your mother feels guilty, why is that?
A. Because mothers bear the haemophiliac boys. A cousin of hers had haemophiliac sons and we have all been infected.
And as a result of that my mum Elizabeth feels that guilt.
Mothers do feel the guilt because they see what you have to go through and even as a haemophiliac there are so many impacts on your life, with bleeds and hospital stays and damaged joints and everything else. It is just a lifelong health risk.
Q. Why do you feel that it's important to speak out about your journey?
A. I think that the truth has to be told. I listened to a very harrowing statement last week from a woman whose husband died. I knew him very well.
There are so many people in our community of infected and affected in the contaminated community whose voices need to be heard, both here and across the UK.
We want to make sure that the truth gets out there. And this public inquiry is doing something that the others didn't do. It is getting to the truth. We have great confidence in Sir Brian Langstaff, the chairman.
Q. Do you feel empathy with victims of Historic Institutional Abuse?
A. Yes, I do feel a lot of empathy with the HIA victims.
I can't for the life of me understand why they are not being given the justice that they deserve.
Judge Hart concluded that inquiry three years ago and his conclusions were that they had been abused and that they should be compensated.
It is morally reprehensible that the Secretary of State says that this is something that needs to be agreed when the Assembly gets together.
She has millions of pounds at her fingertips at the Treasury and they are talking about £7,000 to £10,000 after their lives were destroyed. And so many of them are dying. And in that there is a similarity.
For us, in relation to the payments, the Prime Minister and the Secretary of State and all the departments all agree that it should never have happened.
They all believe that there should be a parity in the payment schemes across the UK for the contaminated blood people.
Q. What do you hope to get from the inquiry?
A. We hope for truth. We hope that the reality of what really happened, who took the decisions and why, comes out and why government has shuffled its feet for 40 years and not taken responsibility.
We want to know who, what, when, where and why? Because this wasn't necessary and government was not duly diligent.
We also want to know why the pharmaceutical companies have been hiding, because they created these products.
Q. Has your experience destroyed your life?
A. My life is different than it might have been.
I am a positive person and I try to live the life that God gives me as well as I can.
I have been close to death and therefore every day is a blessing and a bonus.
When you meet people like you who are suffering, you meet special people and you share special experiences and special understandings.
Everyone suffers in some way. We have just been allocated a specific type of suffering because of this contaminated blood.
Q. What hope do you hold on to in all of this?
A. I hope that we get closure from this inquiry. I hope that this will lead to better practice.
I will live as long as God gives me, but I hope that I live every day in a healthy and happy way.
And I will feel better, having had the chance to speak for those who are no longer here.