A brief history of the scandal
In what is widely recognised to be the biggest treatment scandal in the history of the NHS, over 4,500 haemophiliacs and an additional 5,000 to 28,000 transfusion patients were treated using products that were contaminated with a blood-borne virus in the 1970s and 80s.
At the time, medical professionals were aware of the risk of viruses such as hepatitis C and human immunodeficiency virus (HIV) being transmitted through blood transfusions, and other blood-based treatments.
Despite this, the British Government continued to import blood from the United States, where sources included high-risk donors and prisoners. Although Dr David Owen, the then Secretary of State for Health, announced in 1975 that several million pounds would be allocated so that the UK could become self-sufficient in blood supplies – a recommendation echoed by the World Health Organisation – this goal was not achieved. After the initiative, over 50% of the UK’s supply of Factor VIII (one of the contaminated products used to treat haemophilia) was still being imported from overseas.
By 1983 a number of experts had raised concerns regarding the transmission of infection, particularly AIDS, from imported contaminated products. However, as late as January 1984, Government officials in the UK continued to refute the link and import products.
By early 1985, the Government announced that only heat-treated Factor VIII would be used to treat haemophilia, a process that would prevent the transmission of blood-based infections.
Over the years that followed, the mechanism of transmission of HIV became more widely understood and the link between the contaminated blood products was acknowledged. In 1988, the UK Government announced plans to financially support 1,200 haemophiliacs who had been infected with HIV.
No plans were announced to help other victims, as the Government singled out those who were born with the hereditary disease haemophilia. Other victims included cancer patients, accident victims and pregnant women, who had received contaminated blood as part of their treatment.
As a result of continued campaigning, the Government extended their scheme to incorporate non-haemophiliacs in 1992, and eventually to people who had contracted HIV.
The payments under these schemes, which come without recognition of any fault, have widely been criticised as inadequate, particularly when compared against similar schemes in other countries. The schemes are slow to release payment and very rarely are victims provided with the full amount requested. The various schemes also require two to three separate quotes or estimates for any funding requested, even for necessities such as building a slope to allow access for a wheelchair, which is often seen as a barrier to claim given that many of the victims begin each day suffering from a long term, incapacitating disease. However, as many victims have been unable to work since their diagnosis in the late 1980s, obtaining the quotes to receive the necessary payments is critical.
The Government continue to make payments to affected individuals. The current scheme in England (the England Infected Blood Support Scheme) is governed by the NHS Business Services Authority. In Wales, the scheme is governed by the Velindre NHS Trust and NHS Wales Shared Services Partnership.
However, it is important to acknowledge that compensation is only part of the problem. Many of the victims have given evidence that as their medical records have a hazard sticker on the front, even in 2019, they are still seeing a culture of stigmatizing for their illnesses. Also, like a lot of our clients, those affected want answers. For many years the British Government had refused to conduct a formal inquiry into the disaster.
In July 2017, the government finally bowed to pressure and agreed to hold a public inquiry.
The inquiry began on 30 April 2019. It will investigate the following questions:
- Why people were given infected blood and/or infected blood products;
- The impact that this has had on their families;
- How the authorities responded;
- Support that has been provided following the infection;
- Whether appropriate information and warnings were given to patients; and
- Whether there has been a cover-up.
Jason Evans, founder of Factor 8 Campaign UK and a campaigner for the public told the press; “One of the key reasons the inquiry is important is to help prevent something like this from happening again in the future”
He also warned about risks of a similar scandal in the future, stating “there are still plasma products being made and we’d like to think that things are different now and it couldn’t happen again… but all it takes is for another virus to come along where protections aren’t in place against that particular virus and I think it could happen again”.
How real are the risks of something like this happening again?
Knowledge of transmissible viruses has increased, and lessons have been learned as a result of the errors made in the 70s and 80s. Stricter collection policies, improved handling of collected samples and the use of synthetic products have all been put in place to ensure patient safety.
However, knowledge of blood-borne viruses is still imperfect. It was not recognised until 2004 that Variant Creutzfeldt-Jakob disease (vCJD), the human form of mad cow disease, could be transmitted through blood.
In this instance, the process of leucodepletion or leukoreduction, which removes white blood cells, is believed to sufficiently reduce the risk of transmission. As a result, there are only a small number of instances where contaminated blood is thought to have been used in the UK, all of which occurred before leucodepletion or leucoreduction was introduced.
This demonstrates how the concerns that new diseases could be discovered which are transmissible are very real, and how important it is that we do not become complacent in using the procedures which we now consider to be effective.
The England Infected Blood Support Scheme and the Wales Infected Blood Support Scheme are examples of Government attempts to compensate victims without the need to attribute blame. Both have been widely criticised since their introduction.
In 2017 the Department of Health published their consultation on ‘Rapid Resolution and Redress Scheme’ for babies with serious brain damage following childbirth. Like the scheme for infected blood victims, it was touted as a means of righting any wrong, without the need to attribute blame. Although the details are vague, at present – the initial plans were widely criticised by both Claimant and Defence legal representatives.
The Criminal Injuries Compensation Authority, another Government compensation scheme have also come under scrutiny recently, for ‘re-traumatising’ victims of violence.
The Government’s track record on compensation schemes sets an alarming precedent and demonstrates how the implementation of any compensation scheme should be very carefully consulted on, particularly as the ‘Rapid Resolution and Redress Scheme’ is designed to affect some of the most vulnerable victims, in the most complex types of case.
The current system for supporting victims of the scandal illustrates how a Government scheme might sound straightforward on the face of it, but in reality represent a complex process of applications and assessments again. We endorse the sentiment of making financial recompense readily available to those in need, but, this should not come at the cost of them getting the correct amount of compensation. Assessing how much is correct is a complex process, which benefits both the Claimant and the Defendant, by ensuring, as accurate as possible, that the right amount of compensation is awarded. Although there are obvious benefits to a system without dispute, removing the Claimant’s ability to challenge the fairness of an award with the right to legal representation to assist them, if they wish, is tantamount to injustice. The Government should focus their attention on improving aspects of the current system, which could easily achieve similar goals, whilst maintaining the victim’s right to instruct an experienced representative, to advise them and ensure that they receive the appropriate level of compensation.