“Can we live out the rest of our lives with dignity?”

Survey responses – Treatments and Lump Sums
14th November 2017
SIBF discussions with Damian Green MP, Minister for the Cabinet Office
13th December 2017
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“Can we live out the rest of our lives with dignity?”

“Hello I’m Sean (not real name), I’m 61 years of age, I live near Glasgow and I’m a member of the Scottish Infected Blood Forum. I’ll speak from the heart in this interview.

 

First diagnosed

I was first diagnosed with hepatitis C in 2000, and I found out when I had given blood at work.  I thought it would be a good opportunity to give blood as I hadn’t given blood since I was 18 and a couple of months later I came home from work and my wife had said that the blood transfusion service had been on the phone, and that I had hepatitis C. Why didn’t they leave a message for me to phone them? I was quite angry that they hadn’t told me initially because at that stage I didn’t know what Hep C was,  I had no idea whatsoever, and I was a bit gobsmacked that they had the audacity to phone and tell my wife and not even tell me initially.

I then phoned them the next day and they said I had to go to Glasgow to see them and they would discuss the ramifications of it.  I then went in there and met someone in Glasgow and I gave them my past history and they said in all probability it was a blood transfusion I had received in 1988 when I had a burst ulcer and I attended Ninewells Hospital in Dundee, and that’s when I first was informed, in the year 2000.

 

GP

I’ve seen a couple of doctors at my GP’s practice and I don’t think half of them have got a clue about the implications and ramifications of hep C – unless you’re involved with it all the time and educated about it then you wouldn’t know.

 

Immune system

Sometimes you feel really bad and I wonder if it’s to do with this hep C. Wakening up at night and I’ve got dry skin and I know when I was on the interferon before, I then got a phone call from the nurse that was treating me saying “your immune system is shot” so I’m now on thyroxine because I’ve got an underactive thyroid because of the interferon.

 

Underactive thyroid/Cold

So I take thyroxine every day and I really feel the cold more than anything now, whereas before it didn’t bother me one way or other. But they said it’s probably because my immune system’s so badly affected.

 

What happened – Government records

Over the years, I don’t know how many pages of bumf I’ve got in my filling cabinet at work, but when you read this stuff that they were aware of the situation in the 70s and 80s and they just blanked it and hid it, and there was stuff that was supposed to have been shredded that was then found in offices, it was some junior civil servant who was supposed to have got rid of the material and then they find it and some office 20 years later or something like that. How did the government get indemnity so that they couldn’t get taken to court? It’s ludicrous. They’ve stitched everybody up.  It’s frightening, it’s shocking.

 

Toxic treatments

The interferon is toxic.  It’s a poison.  Because I was only on it for three months and they had to stop it because I was non-respondent, but even that three months was hell.  I had nausea, sickness, was very emotional, I would cry at anything.

 

Risk of passing infection on

I had a blood transfusion in 1988, so for 12 years (1988-2000)… my wife and I spoke about it and she took the stance that she didn’t want to know… (visibly shaken talking about it) I get quite upset because that went through my mind that something might have happened to one of the kids even with a toothbrush or razor or anything like that, that I could have possibly passed it on to them.  But my wife has never been screened and she doesn’t want to get screened and I found that difficult to accept at times but that was her decision and we went with it.  But that burns deep inside me as well.

 

Family screened/tested

My two older kids have been screened when they themselves gave blood so I know that they are okay.  Our younger one though who’s in his early 20’s I know for fact he’s not been screened.  Maybe that’s something we need to get sorted.

I don’t think my wife has given blood herself and she hasn’t exhibited any symptoms of hepatitis C.  It’s something we spoke about years and years ago but not recently because it’s hard, it’s very hard to talk about.

She has been an absolute rock.  It really upsets me that maybe she should get tested, but I don’t want to put her under any pressure.  I know sometimes they say the possibility of you passing it on is maybe minimal, but there is always a nagging doubt and that really really makes me distraught.

 

Counselling

I’ve not talked to my doctor about this and I’ve not been offered any counselling or discussed counselling, I’ve never thought about it to be honest, I have never thought about it. (getting visibly upset).

 

Hospital experience

As it transpired I then had to go and see a Dr (name withheld), a consultant doctor at the Glasgow Royal infirmary and was under his care.

But I felt the first time I had gone there to give blood after being told I had hepatitis C that you are stigmatised, and I just felt that any time I go to hospital and I’m sitting at that waiting-room, people are looking at me and thinking that he’s on drugs or he has been a drug user, and it’s probably silly at times and it’s just things I get in my head but you know they tar you with the same brush at times.

I just don’t like going up to the hospital.  It was six monthly visits getting blood tests, getting a biopsy, getting a fibro scan, and they never offered any treatment because at that stage they said the damage wasn’t serious enough to warrant the possibility of any medication.

So for years and years I kept going to the hospital and nothing was ever done and I just felt do they wait for such a state that your liver’s in before they do something, why don’t they try and do something before the damage maybe gets worse?

But maybe I never asked the right questions?

And then I saw another consultant Dr (name withheld), I’m under has care at this particular time, and they just kept saying well ‘we’ll possibly offer you treatment in the near future’ and I was then given treatment in about 2010 I think or 2011. The course should have lasted 48 weeks and that consisted of interferon and ribavirin.  But I was only on the treatment for three months because I was a ‘non-responder’, and they stopped it after that particular time. But I didn’t enjoy the side-effects of the Ribavirin or interferon because I suffered quite badly from them.

 

Initial treatment

When I was on my initial treatment I think with the interferon it caused me a lot of dry skin and I still suffer badly from dry skin and psoriasis on my scalp.  I think it’s down to the interferon. I’ve never had a problem prior to that but certainly since I’ve taken that. And I take an emollient creams and I put them on every night to try and alleviate the discomfort and the irritation.

 

Side-effects, the progression etc.

I feel certainly that the hepatitis C virus has affected me and my lifestyle because I’ve terrible pains in my joints and I’ve had two knee replacements done in the last five years. I’m sure the Hep C was part of it because I still get discomforts walking: muscular pain, and pain through my joints. No one in my family has a history of arthritis.

I got my right knee done last year and my left knee done 3 1/2 years ago.  That was a compartmental replacement, a third of the knee was replaced because it was arthritic and I’m back seeing the consultant at Ross Hall on Tuesday, but I still get a lot of pain and discomfort just walking and I enjoy going out walking with the dog and all that but it’s as if I’m walking through the pain.  At the back of my mind I feel it’s all related to the hep C as well.

I also suffered badly from an underactive thyroid which I feel the cold really, really badly.  I’ve always been quite fit and healthy but the latter years of this disease they’ve really taken their toll on me.  My family have never ever had any illnesses related to joint pain or discomforts, my brother’s fit, my sister was young, fit and healthy and it’s something I’m sure it’s related to the hepatitis C virus.  Other things that may manifest itself, particularly the cold, my wife says I’m a grumpy old sod at times, I can’t remember things she asks me five minutes ago never mind…  it’s just the things that I think it’s all related, whether it be brain fog or just…

 

I don’t mention it at the Doctors

My autoimmune system is depleted and I’m on thyroxine which I take every day.  I suffer from fatigue and tingling in my fingers.  Also dry skin and psoriasis which I have quite bad.

The consultant has never revealed that that is due solely to the hepatitis C but I’m just led to believe that there are facts out there to suggest that hepatitis C virus does cause these things.  I’m on emollient creams that I take from my dry skin and psoriasis but I don’t take anything for the tingling fingers because I’m a bit… sometimes I go to the doctors and I don’t really mention it, because I think maybe it’s not related to hepatitis C.  But I’m sure there’s other things going on that are caused by this particular virus.

Activity – incapacity

I was always football orientated with the kids when they were younger we were always out playing football but certainly in the last 15 to 20 years I found it difficult to participate a lot – to go out, walk and run, tiredness and fatigue seem to take over.  I’m glad I can go to work because I’ve got bills to pay and I’ve got a mortgage to pay and it’s important to me that I sustain that.  Whereas I’d love to go out and maybe go up the park and kick the ball with the boys at times, go out and play golf, I try to play golf a couple of times with my son but it was fatigue and tiredness which would restrict me to maybe play two or three holes rather than nine holes.

So I’ve lost a lot of social enjoyment that I don’t have now with my two sons and my daughter and son-in-law and for that I feel quite bitter because I’m sure it’s down to this hepatitis C virus that’s affected me… (getting upset/crying)

 

UK/Scottish Government

The day after David Cameron stood up and said ‘sorry, we’re going to get something sorted out’, offering £25 million into the pot, nothing had been done with the £25 million so 14 months later we’re still waiting.  So I get about ratty about that.  Certainly in terms of the Scottish government I would like to think that they’re listening and they are trying but I think they could still do more for us.

 

Stage 1/Stage 2 distinction and regular payments

I don’t believe stage I and stage II payment scheme or the recommendation that they accepted is right.  It’s good that we’ve been awarded £30,000 but I believe there should be a further payment for stage I victims, an annual payment of say £18,000 to £20,000.  I’m happy stage 2’s can get the £27,000.  I just feel there is a disparity that they could possibly look at because I think stage I’s deserve more than just £30,000 and then they’re forgotten about.

 

Financial difficulties – mortgage/no life insurance

and that would go a small way to making things a wee bit less difficult for them because in terms of bills, expenses, mortgages which I’ve still got to pay, I don’t have any life insurance because I had a £14,000 shortfall in my mortgage which I then had to extend but I couldn’t get any assurance on that.  And I think that’s wrong.  I believe that if we were given a little help it could alleviate some of the problems we are encountering at this particular time.

 

Work – SSP/Insurance

I’m actually quite fortunate in that my employer pays a full salary for three months and half salary for a for a further three months for sick pay, but after that you would get nothing, you would only get SSP or insurance if you had taken it out yourself.  I’m fortunate but a lot of other people are less well-off or don’t have any schemes they can fall back on to receive any money and I think it’s important that they’re given help and assistance for when you require it.

Effect on Work

I know I’m stage I and I’m still working but there are days when I get up and don’t feel like going to work, but I’ve got to go to work, because I’ve got  you bills to pay and have still got the family to feed and support so I have to make the effort.  But there’s a lot less fortunate people who aren’t able to go to work and I think it’s an important that they get help and assistance.  That’s important to me.

 

Penrose

I was eagerly awaiting the news from Penrose because I was delighted when Nicola Sturgeon announced all those years ago that there was going to be an inquiry and I felt elated and I’ve thought we’re going to get justice, were going to get justice.  And I was cock-a-hoop.  How it took so long, six or seven years and £12 million, I don’t know.  And that I just cannot believe it took so long and for Lord Penrose to make just one recommendation that anybody with hepatitis C or who had had a blood transfusion between whatever year to be tested for hepatitis C, that was absolutely ludicrous and I was gobsmacked, gutted, I was distraught at that.  Now whether his hands were tied by the terms of reference, I don’t know, but I’m sure he could have done a lot more for us.

 

New medication

I’m currently undertaking a new course of treatment which I commenced three weeks ago.  Having waited five months, I was then told I could start this treatment and I’m on Viekirax (ombitasvir / paritaprevir / ritonavir).  I’m also on Dasabuvir, I take one in the morning and one in evening and I’m on six Ribavirin and the side-effects of those have been nausea, tiredness, really really tired, lack of sleep … and the hospital phoned me on Monday of this week to say that I had a low blood count and it was probably because I was taking too many Ribavirin so they’ve readjusted my intake to 4 tablets daily rather than six.  So I’m hopeful that that may make me feel a wee bit better in the next day or two. As it is just now I still feel nauseous and tired but I’m hopeful that this new course of treatment which I believe has a 98% or 99% success rate will alleviate the virus to a certain extent for myself whereas before when I had treatment six months ago, I was a ‘non-responder’ and went through three months of hell and it was very, very unpleasant.  So I’m hopeful that this new course of treatment may help me achieve something to a better health.

 

Stage 1 – means testing?

I firmly believe that people shouldn’t have to be tested to achieve something or they shouldn’t have to rely on the government saying we’ll check you for this or we’ll check for that.  We were given this virus and are ill due to the government’s negligence and they shouldn’t need to go cap in hand to beg and borrow so they can have a decent life.  It’s so unfair that they’re treated this way.

I think that £20,000 would let people with their lives a wee bit more securely, lead their life with a wee bit more dignity.

 

28 years infected

I just feel now I’ve probably had this virus 28 years and they say it could live for 30 years before it starts making itself known type of thing.  And I just feel now I’ve had this 28 years and it could start affecting more than it does.  I’ve been quite fortunate in relation to other people who’ve got hepatitis C and have suffered much more than me, but it would be nice to think I could kick this virus, whether the new drugs that we have now, and I know their expensive drugs, and hopefully they may alleviate it, but maybe there is a 0.1% chance that they are not going to eradicate it and I’ll then have to go back and get six-month blood treatments.  It would be nice for this to finally give us a final chapter so that the days we’ve got left of our lives we can, our families and ourselves can be looked after, we can lead our lives the best we can with a bit of dignity and a bit of security and hopefully that may come in the near future.

 

Parting Wish

Maybe everybody who is affected by hepatitis C in Scotland can maybe achieve or get on the road to get this sorted-out finally and we can lead a life, as I say what we’ve got left of our lives, with dignity, thank you.”

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