The following is a redacted and anonymised written witness statement of one of the Forum members, recorded by Inquiry staff not Thompsons solicitors.
The member has given permission for the redacted statement to be published here to give others an idea of what sort of questions and responses will be asked and recorded.
The member had lengthy discussions with the Inquiry team who visited the member at their home. The following initial witness statement is a refined and summarised document standardised for use by the Inquiry using the following headings:
“Witness Name: xxxxx xxxxxx
Statement No.: WITN00xxxxxx
INFECTED BLOOD INQUIRY
FIRST WRITTEN STATEMENT OF xxxxx xxxxxx
I provide this statement in response to a request under Rule 9 of the Inquiry Rules 2006 dated xx xxxxx 2018. I adopt the paragraph numbering in the Rule 9 request for ease of reference.
I, xxxxx xxxxxxxx, will say as follows: –
Part of this procedure I required a blood transfusion. I can remember lying in bed with tubes in my right arm from a stand, one was clear and one was red, it obviously had blood in it. I can also remember the bags had blood in them. I was lucky that I did not lose my arm. I was in hospital for a few weeks and received a skin graft.
After leaving hospital, I went to work after 3 weeks. I was worried I wouldn’t get my job back. My employer reassured me that there was a job there on my return and I also got £1000 in compensation. My employer was a renowned company for 100 years but they have now closed down.
I then worked for xxxxxx xxxxxxxxxx for 19 years. I also signed up for the Territorial Army.
In 198x I found a lump which was on my neck/throat. This became a haematoma. I went to xxxxx hospital. I lost a lot of blood and when they opened it up, everything came out.
On xx xxxxxxx 1998, I went to hospital in xxxxx for a neck operation. This lump on my neck was swelling up and I was struggling to breath. The Doctor came in to examine me. I remember he was shining a torch down my throat, I couldn’t breath and he ended up doing an emergency tracheotomy.
Again, I needed a transfusion. I remember lots of tubes, one went into my throat to help me to breath but there was one which I think was for blood. The hospital were pretty good, they got me back in for counselling because it was so scary. I think I nearly died.
Three years later, I went to hospital because another haematoma developed on the back of my neck. I went there to get it cut off. Two years later it reappeared again and this time I went to xxxxxxxx Hospital. There I was told I could have it removed but there was a possibility of the operation not working properly and it might have left me with a disability. I did not want to take the chance and I refused the operation.
I had been living in xxxxxx but after splitting up with my wife I came back to xxxxxxx. In June 201x, I moved to see a GP at xxxxxxxxx Surgery. The GP there did some blood tests on me and diagnosed me with Hepatitis C. He then referred me to xxxxxxxxx xxxxxxxx General Hospital where a Dr xxxxxx did further tests and he also told me that I had Hepatitis C, Type 1, Genotype 3.
When I was first told about the infection, the Doctor asked me if I had promiscuous sex, if I had taken drugs or if I had any tattoos. My answer to all this was no. I think it was Dr xxxxxx that asked me if I had had any blood transfusions and I told him that I had when I injured my arm in 197x. He said there is a possibility that I was given infected blood. I was not really told much about the infection itself.
The Doctors made every effort that I would not pass it on. They gave me condoms. They told me things about toothbrushes and keep razor blades away and to be very careful if I cut myself.
I think they knew about my infection earlier than when told. I think they knew something was wrong but how can I prove that. Obviously they should have told me as soon as they knew.
Although the Doctors were pretty good with some of the advice around passing the infection on, but at the time I felt dumbfounded that I wasn’t told about any of the support groups. I just went home. It was only following the Penrose inquiry that I found out that other people were infected the same way as me.
When I had gone into hospital in 197x because of my arm injury, because of my age, my Father was needed to give consent, which he did. I had conversations with my Father around this, and he never mentioned me warning him of possible risks being given infected blood.
Physically, I have chronic fatigue, I am always tired.
I think that the following medical complications have resulted from my infection. I have had haematomas, kidney stones, blood clots, a stomach hernia, constant dizziness from low blood pressure and complications with my liver. My Doctor said I have cirrhosis of the liver. I still have 6 monthly liver assessments, my last scan was 6 weeks ago, I will receive the results on the xx October 2018.
In 2014, the Doctors treated me with tablets to help with my infection. There were two tablets, one big one, one small one. One was called ribavirin. We tried this for 12 weeks but it did not seem to help, nothing happened.
My liver appeared to be deteriorating, I had a liver stiffness score of over 15 which qualified me for another drug, this new drug was very expensive.
I do not know the name of the new drug but the treatment consisted of interferon injections plus two tablets, one of which was ribavirin and the other I presume the new drug. I stayed on this until the end of 2014 and on being tested was told that I was clear of Hepatitis C. I have continued my check ups and about a year ago I was told I was still clear of Hepatitis C.
I did not face any difficulties or obstacles in getting any treatment.
To be honest, at the time I was unaware of any other treatments that were available to me. I can’t remember anyone mentioning any other further treatments that I could have had.
Following my interferon treatment, I found that tiredness became worse and worse. I have noticed that in the last few years I can hardly get out of bed, my legs just feel like lead.
I have been asked how my infected status has impacted upon other medical and dental care. As far as my dental treatment goes, I did tell them I had Hepatitis C and there were no issues.
As far my continuing medical care goes, I did not feel like I was treated differently. The hospital staff have always been very nice, especially at the xxxxxxxxx.
I do find it uncomfortable when I am with other people infected with Hepatitis C in the hospital. I find that I keep telling the staff that I was infected with the virus through a blood transfusion.
Since my diagnosis, I have met a new partner. We have been together for about x and half years. However, I have not told her about my infection.
I still regularly see my kids, they are grown up, I have told them. Of course they and their Mother (who also knows) had to be tested to make sure I have did not pass the infection on to them. This was quite stressful for all of them and not very nice.
The only other person that I have told apart from medical staff is my best pal and my sister.
I have spoken with a reporter from the Scottish Daily Mail, anonymously. I can’t remember when this was or how I came speak with him.
There was a stigma around this whole business of Hepatitis C. Everybody thinks it is related to drug users and people that are having promiscuous sex. I think people would then be talking about you behind your back, so I just feel like people don’t need to know. Because of this stigma, I find it hard to talk about which is probably why I have never mentioned this to my partner.
As far as the infection impacting on my education I left school at 16 and never wished to go further academically.
It did not stop me getting a job, I have worked all my life. Although financially it has impacted on me. I have worked as a xxxxxxxxx for the last 20 years and when I become too tired, I can’t work. I can’t do the same hours as I did before. I do need to get the money but I can’t physically do it.
This obviously impacts on my children, had I been able to work more hours and claim more pay I could have given them so much more.
As I have said I had no idea with regards to support schemes, trusts, and funds that were available to me because I had been given contaminated blood. It was Dr xxxxxx who told me about the Skipton Fund. I filled out a form and took it to Dr xxxxxx who completed it and sent it off to the Skipton Fund.
They actually refused this application and told me that I had to find more evidence of this transfusion. Dr xxxxxx and I tried to get my records of the operation on my arm and the transfusion.
The Skipton Fund wrote back asking if I was PCR or RNA, I don’t know what these mean. Dr xxxxxx tried to get my records but he was told that these had been destroyed. Dr xxxxxx again confirmed my status and in January 2014.
I appealed the Skipton Fund’s decision not to pay me. But following the information sent from Dr xxxxxx, they decided that they would pay. They said that they were satisfied that is more likely than not that your infection from qualifying NHS treatment and accordingly allowed the appeal. The letter was signed off by xxxxx xxxxx (chair of appeal panel).
The Skipton Fund then paid me £20,000. There were no preconditions to this payment.
This procedure took about 3 months, I found my dealings with the Skipton Fund quite slow. I needed to make phone calls to move it along. I found them not very helpful.
I then applied for a stage 2 payment from the Skipton Fund in 2016, but this was refused because they argued around the levels of stiffness of my liver.
There had been correspondence between the hospitals and the Skipton Fund which showed my liver readings. Two of which showed my readings as high as 14.5 kpa and 15 kpa however there was a lower reading at a later time of 7.5 kpa. They have appeared to take the lowest reading, and because of that they have told me that I do not reach the criteria for the payment. The reason being that my liver had not deteriorated enough according to them.
Three years ago, I got an extra £30K from the Scottish Government. Also, I have received £500 as a winter fuel allowance from the Scottish Infected Blood Scheme (SIBS). This annual payment is now £1000.
I have quite strong views about the payment procedures, firstly why was nobody allowed to attend the appeals at the Skipton Fund. I feel everybody is equal that there should not be a stage 1 or a stage 2, who invented this measurement?
I feel discriminated against. Everybody was infected the same way, it is wrong, everyone should be paid the same amount of money and there should be no stages. The categories should be ‘infected’ of ‘Not infected’ not stage 1 or 2.
I have been asked if I would like to put any questions to the Inquiry. Have they looked at the records from the Scottish Blood Transfusion Service? There may be evidence from the 1970s showing where the infected blood came from. Was it tested? Where was it tested? How did they carry out the tests? Also why was this blood not screened when it came into the country? Why were the pharmaceutical companies not screening the blood? There was so many opportunities to screen the blood.
Ignorance isn’t an excuse.
Statement of Truth
I believe that the facts stated in this witness statement are true.