People’s needs begin at the point they were infected, not diagnosis

The contaminated blood disaster is unique in the United Kingdom for many reasons. One of these is the protracted lengths of time between the date people were infected, the date they were tested, the date they were diagnosed and the eventual date they were given help.

We have spoken to one SIBF member, who wishes to remain anonymous, about their views.

“There are 4 key dates in everyone’s situation:

1. The first one will be when they were infected and for some people that is known and for some people it might be within a time period of when certain products were being used.
2. The next key date is when it was discovered, when it was diagnosed they had been infected with the virus.
3. The third key date is when they were told that they had been infected. Now sometimes these dates are close together, but for people with hep C many had experienced a significant wait, for example between when it was discovered that they had been infected and it was recorded on their records and when they were actually told about their infection.
4. And then the fourth key date is when the authorities – government, whoever – decided that they ought to do the honourable thing and take a level of responsibility for what happened and support people.

And what you don’t see too often, and certainly not currently, is enough recognition that peoples’ needs didn’t begin at the point when the Government said ‘we better do something about this’, they didn’t even begin at the point when they were told that they had this virus, they didn’t even begin at the point when the NHS discovered that they had the virus. Surely, their needs begin, or began, at the point at which they were infected.”

‘Missing’ records
“To complicate matters even further, there are some poor folks where hardly any of these dates are known because their records have mysteriously disappeared, and without wishing to go down the route of some classical madcap conspiracy theorist, the chances of someone’s records in relation to their hepatitis c records going missing are the normal chances that anyone would have for their records going missing. But if other people in the same situation as them in the same hospital, all those records of that period disappeared, that’s not just a one-off clerical error, that’s beginning to look like a systemic problem.

And then where it’s other hospitals in other parts of the country with the same batches of records in the same time period have gone missing, that surely raises questions even about possible conspiracy, because statistically how could you have these adverse events all happening to a distinct group of people, covering a distinct period of time? That, I think, needs to be looked at again.

I’ve spoken to a number of people whose records are missing and although that sounds like just an issue of something put in the wrong place and can’t be found, the ramifications of that for the people whose records have gone missing are really serious: because they don’t have the ability to demonstrate that they were infected by the NHS even though their infection was, as they in good faith took NHS treatment and would have rightly expected not only that their treatment would not do them any harm but the record of being treated would be kept, and yet because they can’t prove that they were infected by that route, they receive nothing, which almost compounds the wrongness of what happened to them. For example, widows whose husbands has since passed away and who no longer have access to the records, not only do they suffer the loss of their soul-mate/partner prematurely, but the support that they ought to be receiving as a result of that is denied them by the very organisation that caused the problem in the first place. That is just not right.”