Anna’s Blog – The Infected Blood Scandal and Closed Cultures
Closed cultures are one of the biggest risks to people with support needs in social care services. The CQC identifies a closed culture as one that ‘can lead to harm, including human rights breaches such as abuse’, where concerns are less likely be to be observed or reported. Closed cultures make it difficult for people to speak out against poor practice, and encourage ‘blame culture’ where people are reluctant to accept responsibility for their actions.
Closed cultures are not exclusive to social care by any means, and can have an impact on safety in any sector. In May we were all shocked by the public inquiry into the infected blood scandal and the scale of people impacted. More than 30,000 people in the UK were infected with HIV and Hepatitis C in the 1970s and 80s after being given contaminated blood products, and made into unwilling participants of clinical trials.
If you didn’t see the reports, due to a shortage of blood products in the UK, the NHS began to import from the US. These products contained potentially fatal viruses. These treatments were given to two main groups – those given blood transfusions & those with haemophilia, a rare condition where blood does not clot properly. The consequence for those given blood transfusions was estimated to be 80-100 individuals infected with HIV and around 27,000 infected with Hepatitis C. For those with haemophilia, the risks were higher as they were given the clotting agent Factor VIII, which is made from pooling plasma from tens of thousands of donors. In total, around 1,250 people given infected treatments developed both HIV & Hepatitis C, including 380 children, of whom two thirds died of AIDS related illnesses. This doesn’t include partners who were also unknowingly infected.
The incident is described as “the biggest treatment disaster in the history of the NHS”, with doctors, the government and the NHS accused of repeatedly failing patients. In the mid-1970s there were repeated warnings that Factor VIII carried a greater risk of infection, yet until 1983 the government insisted there was no “conclusive proof” that HIV could be transmitted in blood – a purposefully misleading cover-up.
One of the most shocking revelations that came out was the use of children in clinical trials without their consent or knowledge. One case study, Luke O’Shea-Phillips, caught Hepatitis C while being treated for haemophilia in London at age three. Evidence suggests he was given the blood product so he could enrol in a clinical trial by doctors, who were aware the sample may be infected. Doctors knew that Luke had Hepatitis C from as early as 1993, but he was not told until 1997.
The unthinkable consequences of a closed culture here are crystal clear. Inquiry chairman Sir Brian Langstaff noted there was a “lack of openness” from the authorities and elements of “downright deception”, which includes the destruction of documents. People involved in treatments were not made aware of the risks, the availability of alternatives, or even whether they were infected.
Sir Brian insisted on the need for a “culture change” to prevent cover-ups and acknowledge mistakes, “such that safety is embedded as a first principle, and is regarded as an essential measure of quality of care.” He also argued that the “culture of defensiveness, lack of openness, failure to be forthcoming and being dismissive of concerns” could be tackled by making leaders accountable for how the culture operates in their part of the system, and for the way in which it involves patients. Currently, a ‘duty of candour’ already exists in the NHS, expecting staff to be open and honest with patients about mistakes. Sir Brian notes that this is being reviewed in England to assess how effective the system is in practice.
The shift to open cultures also means a shift towards a ‘no blame’ culture, where people should feel confident to raise issues of poor practice without fear, and feel confident in their abilities while also confronting their own mistakes, wherever possible given the needs of the vulnerable people we support. If people are afraid of reporting mistakes, this is a sign of working in a closed culture.
Open cultures are necessary across all workspaces. Creative Support launched its Open Cultures campaign in October 2021, working towards ending closed cultures and encouraging openness within all services. “One of the key ways we work in Creative Support is ensuring everyone is aware of and acts upon their duty of care. Staff should feel empowered to act upon their duty of care in a ‘no blame’ culture without fear of reprisal,” said Chris Dunne, Quality Manager and Lead for Closed Cultures.
Chris flagged that ‘No Blame’ cultures work best in teams which already have a strong commitment of transparency and personal responsibility. Staff should discuss failings openly and work together to put things right. If you have any concerns about any instances of poor practice, you can use our internal reporting procedure Code RED. This process has been designed to promote an open culture of individual responsibility and quick action. You can email code.red@creativesupport.co.uk or call 0161 238 7657.