The Scottish Infected Blood Forum is the only recognised charity in Scotland that seeks to provide support to all individuals who were infected with Hepatitis C as the result of NHS treatment with contaminated blood from receiving blood and blood products. It includes people who received blood transfusions and people with haemophilia as well as family members.
This website is about connecting and supporting people who have been infected or affected by contaminated NHS blood and blood products.
The SIBF seeks to raise awareness and provide information about infected blood issues. We know that people who discover they have a virus often feel distressed about how it happened, concerned about how other people might react, and anxious about what it means for the future. We also know that many people do not even know they have a viral infection as a result of previous NHS treatment.
We hope you find this website useful. If you have any comments or want to find out more, please go to the Contact Us section.
On this site you can get plain, practical and independent information on the main issues, including:
- What does it mean to have a virus?
- How are other people coping?
- What should I tell family, friends or workmates?
- Where can I go for help?
The information has been arranged under specific topics to make it easy to find what you are looking for.
- Understanding viral infections
- Living well despite having a virus
- The Penrose Inquiry into contaminated blood
- Sharing experiences with other affected people
- What you can do to make a difference
We hope you find this website useful. If you have any comments or want to find out more, please go to the Contact Us section.
How Did It Happen?
Yes, that's true, it's estimated that almost 3,000 people in Scotland have been infected with one or more viruses due to contaminated NHS blood and blood products. Exact figures are not known due to incomplete, destroyed or missing records. During the 1970’s and 80’s decisions were made concerning the blood supply that placed everyone in Scotland, and the rest of the UK, at risk. Some of that blood supply came from sources known to be at much higher risk of being contaminated, including the prison population. There were also delays in heat treating the blood supply to eliminate or at least reduce the risk of infections.
There are two main groups of people who actually became infected with a virus in Scotland:
• those who received blood transfusions containing contaminated blood (estimated at approximately 2,500 people), and
• people with bleeding disorders such as haemophilia who need certain blood products to cope with episodes of bleeding (about 480 people).
The authorities were aware that a new type of hepatitis was around in the blood supply (back then they called it ‘Non-A non-B hepatitis’). It would later be named Hepatitis C. The time period also coincided with the emergence of the HIV/AIDS virus.
Back then the possible impacts of Hepatitis C on patients were either unknown or minimised. It turns out that many people were not even told they had been infected with a virus. Some people didn’t find out for over 10 years, by which time they could have been infecting others by not taking quite simple precautions. This did happen in a number of cases.
People were left to live with a life-threatening virus for years, many getting progressively more unwell, but unable to explain why (some were accused of alcoholism or drug use).
As a result of contaminated blood, infected people can find it hard to keep working or even to sustain relationships due to both the ill health and the stigma. There are often problems with insurance, heating bills and simply meeting other normal living costs that put a strain not only on the infected person but also their families.
People have lost jobs, homes, and opportunities producing numerous examples of:
• greatly reduced health and quality of life,
• broken families,
• careers being cut short,
• no security or resources to pass on to families,
• benefit dependency,
• poverty,
• social stigma,
• and in many cases deaths.
In his report on the contaminated blood scandal Lord Penrose described the attitude of health professionals at the time as ‘paternalistic’. And Lord Robert Winston, the well-known medical doctor, writer and broadcaster has described it as ‘the worst treatment disaster in the history of the NHS’.
What's Being Done About it?
Something is being done, at last, but it has taken a long time and a lot of effort.
During the 1980’s and 90’s when a small number of patients realised the significance of this emerging disaster, they began campaigning for answers and for justice. Some people have been campaigning for over 30 years now.
There were some attempts to address the issues. A ‘look-back’ exercise was carried out to try to identify infected people. However overall, governments from Westminster and later Holyrood continued to reject calls for a full and independent public inquiry, or to agree specific support measures on behalf of these ‘state-infected’ victims.
Hopes were raised after the establishment in Scotland of an Expert Group led by Lord Ross. However, the administration at the time of its reporting in 2003 ignored all the Expert Group’s findings. Eventually a small ex-gracia payment scheme was announced by Malcolm Chisholm MSP, but to many people the amounts on offer were derisory.
There was a major breakthrough in 2008 when then Health Minister in the Scottish Government, Nicola Sturgeon MSP, announced that there would be a public inquiry (after a legal ruling in the case of two individuals had forced the issue). This became the Penrose Inquiry, which:
• took 6 years to publish its report,
• allowed only six patient/victims to give oral evidence out of a total of 67 witnesses, the rest of whom were medical professionals and Government officials,
• made just one recommendation,
• and cost £12million.
At the public launch of the Penrose Report it was roundly condemned as a ‘whitewash’ (although it did at least provide the best available collection of evidence on the disaster and highlighted the significant detriments caused to victims).
The Scottish Government (through Alex Neil MSP) commissioned a Scoping Exercise to be carried out by the Scottish Infected Blood Forum. This gave victims the chance to describe in detail their personal experiences of becoming infected with a virus, how it impacted on them and their families, and what they were doing to try to manage their situations.
When the Penrose Report was published the First Minister of Scotland (by then, Nicola Sturgeon MSP), the Cabinet Secretary for Health (Shona Robison MSP), and the UK Prime Minister, David Cameron MP, all publically apologised to victims and their families for what had been done to them by the NHS. While these apologies were welcomed and seen as symbolically significant, it was noted that unfortunately after all these years hundreds of people had already died.
The Scottish Government also responded in a more practical way by setting up the Contaminated Blood Financial Support Review Group. The Penrose Report and the Scoping Exercise became starting points for the Review Group which included patient representative bodies, campaigners and Scottish Government officials.
The Review Group produced some very robust discussions, but did result in the Scottish Government accepting all the Group’s recommendations. These included a more generous financial support package and a commitment to further work to support victims and their families (including bereaved relatives).
How Can I Get Help?
Help is now available in terms of improved medical treatments, financial assistance packages, and peer support groups.
Having a virus like Hepatitis C might not cause any adverse effects, at least not for a while. However many people go on to suffer chronic illness, and experience problems such as:
• excessive tiredness/fatigue,
• muscle cramps and joint pain,
• depression/mood swings
• vomiting/nausea/abdominal pain/other digestive problems,
• loss of appetite,
• itching/skin condition problems,
• difficulty concentrating/‘brain fog’,
• among a variety of other issues.
Ultimately an infected person’s liver can become so damaged by hepatitis (resulting in liver scarring or cirrhosis) that they die prematurely unless they receive a liver transplant (and even then they may only have a further five years of life).
Many infected people were offered anti-viral treatments that included the drug Interferon, or pegylated Interferon in combination with Ribavirin. These had limited success rates and often caused further serious side effects that some felt were worse than the original virus. Some effects only lasted during the course of the treatment, but others have produced new chronic problems lasting long after the treatment itself ended (and regardless of the treatment itself being successful or not). These short or long-term side-effects of treatment include:
• flu-like symptoms (fever, headache, chills, aches and pains, etc.),
• greater risk of mental health problems (such as severe depression, anxiety, etc.),
• increased incidence and intensity of fatigue/malaise/drowsiness,
• irritability, emotional lability,
• cognitive problems (such as poor concentration),
• skin condition issues (hair loss, skin eruptions, etc.),
• immunological issues (such as thyroid problems, vitamin deficiencies),
• weight loss (or gain),
• tinnitus,
• suicidal ideation,
among a variety of other issues.
Since 2015 a number of new treatments have been available that are reported to have fewer side effects and much better success rates for effecting ‘a cure’ (the appropriateness of the word cure is disputed). Individuals should seek professional medical advice in terms of treatment options.
In relation to other (non-medical) help, the Scottish Infected Blood Forum can provide (or signpost you to):
• general information and advice,
• support through opportunities to meet other people facing similar issues with viral infection,
• targeted support (such as accessing the financial packages, benefits advice, counselling, living well with a virus, etc.),
• a collective voice in representing your needs and concerns,
• an individual voice by helping you tell your story,
• specialist projects to meet identified needs.
Please take the chance to look through this website for more information or to contribute to our discussion forum. Regular posts are made to the 'SIBF News' pages so be sure to visit there. You may decide to become a forum member, after all, it’s free!
