30 September 2022: Panel from minority ethnic communities - B

The second morning session was a general discussion. Counsel asked about any thoughts on them as patients coming from minority ethnic communities having an influence on their experiences of infected blood. The sense was one of there being some doctors who were paternalistic, while nurses were usually much more normal to be around. One felt she was treated like a child on some occasions. There were issues around language which let people down. The hierarchies seemed to be too fixed in their thinking. There was the sense of a white relative being given a better hearing when speaking up for the family than those who were not white. One witness now helps others from his cultural backgrounds to access local services. There was no offer of counselling to any of the families, and it was speculated that it was hard enough to overcome the language issues at the medical level, let alone when it might have been needed to provide a support service.

The financial support schemes seemed to be another situation of people being judged, which was a heightened issue for people from a minority ethnic background. The assumed judgements that people had been infected in their “home” country were over-emphasised, despite the lack of evidence either way. It was a clear pre-judgement. Doctors had to be chased up to respond with their input to scheme applications, and sometimes there were unhelpful questions which would probably not be asked of a person assumed to be born in the UK. The lack of taking on board the statements and evidence of the applicant and their family felt like it was made worse by the language and cultural factors. Clearly, some of the issues raised by the witnesses illustrated the general inadequacies of the schemes which made all applicants feel prejudicially treated and discriminated against.

The issue of insurance loading or refusal, just for having been tested for a virus and with no opportunity to explain the circumstances, adds greater burdens to those who have family ties in other countries because of the inflated travel and other insurances. People can be cut off from seeing their families.

Counsel reverted back to the third witness to ask about her work with the Hepatitis C Trust. She had become an official translator. She worked with the Trust to support people from her section of the community to engage with their health needs better through greater access to the supports available from the Trust. There is a taboo on certain health and personal matters being discussed within some communities. Some of the advice on living a healthier life came from the Trust via the witness to people from her community, which she thought should have been passed on more officially by the NHS. Officers in various agencies, including the NHS and schemes, seem to have an automatic negative response to people who have certain types of accents that require just a little more attention to engage with.

Stigma is known to be a major issue within the Contaminated Blood community generally. This can be compounded by people who make assumptions about how a person became infected because of their ethnic origins. It makes it even more likely that infected and affected people from minority ethnic communities will simply not mention their infection. When Counsel asked what might be done to overcome stigma within minority ethnic communities, it was felt that it might start with the medical professionals. When a family member requests a test to see if they have been infected by an infected relative, the doctor wants to know why the test is being requested, which requires another justification. The fact that it is a blood-borne virus should be more emphasised for the purposes of public health. Often people are not told they should highlight these things, which is worse if English is not your first language. It was felt there was a role for education so that children might avoid developing the stigmatising attitudes.

The Chair asked the witness from Kenya about the BCG situation as a matter of clarification, that was all he wanted to ask further.

The witnesses were given the opportunity to make final comments. These included the need to not treat people like children, but to believe what they say as adults. The power imbalance in the relationship between doctors and patients was an issue. One witness knew two other people who applied to the Skipton Fund, and they were approved at the first attempt, while he was refused. The assumption seemed to be that the countries they came from automatically had lower standards of infection control. There were comments which were common to contaminated blood people regardless of ethnic or other dimensions of diversity. Someone has to be held accountable for the loss of life, the loss of loved ones, and the loss of a happy, normal life.

The Chair thanked the witnesses for coming forward, especially given the added stigma associated with the combination of viral infection and ethnic diversity.

There was the usual standing applause for the witnesses, but unusually it became a brief interaction with the attending audience. Gratitude was expressed face-to-face for the support offered and the exchange of information and concern. It was a tender moment of spontaneity and mutual respect.