Who Is Still Out There? The Infected People Britain Never Found

How many people were infected and still do not know?

Much of the infected blood story now focuses on compensation: who has registered, who has received an invitation, who has received an offer and who has finally been paid.

But those figures can only count people who have somehow found their way into the system.

What about the people Britain never found?

The woman who received blood after childbirth.

The child who needed surgery.

The patient transfused after an accident.

The person who experienced an unexplained bout of hepatitis decades ago, recovered and carried on with their life.

The patient whose records have since been destroyed.

And the families of people who died never knowing that an illness later in life might have begun with NHS treatment many years earlier.

How would any of them know that today’s Infected Blood Compensation Scheme could have anything to do with them?

The Inquiry has already exposed a serious failure in tracing

When Britain introduced screening for HIV, a UK-wide lookback process attempted to identify recipients of blood from donors subsequently found to have been infected.

When Hepatitis C arrived, the response was very different.

Screening of UK blood donations for Hepatitis C began on 1 September 1991.

Yet the UK-wide Hepatitis C lookback did not begin until April 1995.

The Infected Blood Inquiry examined that four-and-a-half-year gap and found that the issue had repeatedly been raised and deferred. It concluded there had been “little appetite” for a national Hepatitis C lookback because of cost and resource implications.

Most significantly, the Inquiry concluded that there was “no good reason” for treating Hepatitis C differently from HIV when it came to lookback, and said responsibility for the delay lay mainly with government.

Lookback wasn’t simply an administrative exercise.

It was about finding people who had potentially been infected before they knew to look for themselves.

Britain knew France was doing something different

One entry in the Inquiry’s chronology deserves particular attention.

On 27 June 1990, a committee involving the UK blood transfusion services considered whether there should be a Hepatitis C lookback programme.

It decided it would not be appropriate to establish one at that stage.

But the same discussion recorded that France already had a “comprehensive” lookback programme.

That should make us ask questions.

Why was France taking a different approach?

What happened to the people Britain might have identified had tracing begun earlier?

How many became harder or impossible to find as the years passed?

And how many never realised they had anything to be found for?

The consequences of the delay were real. The Inquiry found that missing medical records became a major obstacle. It recorded evidence that opportunities to identify some surviving recipients transfused during earlier years were lost because hospital laboratory records had been destroyed before the national lookback finally began.

400,000? So where did everybody go?

This brings us to a book that raised extraordinary questions years before the Infected Blood Inquiry delivered its final report.

In 2018, Paul Desmond published:

When Spin Kills: How the NHS Infected 400,000 People with Hepatitis C and Covered It Up.

The figure is startling.

And we need to be absolutely clear:

400,000 is Desmond’s contention. It is not a figure established by the Infected Blood Inquiry.

But his wider argument about tracing deserves examination.

In evidence to the Inquiry, Desmond compared Britain’s response with approaches overseas. He stated that people considered at risk in the United States had been proactively contacted and encouraged to undergo testing, while arguing that Britain had not taken comparable action towards those with historic surgical risks.

Whether one agrees with Desmond’s estimate or not, it leaves us with an important question:

Have we ever truly known how many people were infected — or only how many Britain eventually identified?

Those are not necessarily the same number.

Were people never traced?

Did some die without diagnosis?

Did some clear their infection without understanding where it came from?

Were people diagnosed with liver disease decades later without anyone connecting it to an old transfusion?

How many families today could have absolutely no idea that their history belongs within the infected blood scandal?

The lookback couldn’t find everybody

There was another fundamental limitation.

The national Hepatitis C lookback initially concentrated on donors who had given blood before screening began and who subsequently returned to donate and were found to be Hepatitis C positive.

That meant donors who didn’t return to donate could remain unidentified.

The Inquiry found that patients — and even some GPs — could consequently have assumed that if somebody wasn’t contacted, they had not been infected.

That impression was wrong.

Think about what that means.

For some people:

Silence did not mean they were safe.

It could simply mean nobody had found them.

Then there is Hepatitis B

There is another potentially overlooked population.

People who experienced acute Hepatitis B infection but subsequently cleared it.

Clearing Hepatitis B does not mean every person will experience future illness, and we should not suggest that it does.

However, previous Hepatitis B infection can remain clinically relevant because reactivation is possible in particular circumstances, especially during certain forms of immunosuppression.

That raises another set of questions.

What happened to people who acquired acute Hepatitis B through contaminated NHS blood and apparently recovered?

Were they all identified?

Were they told how they had become infected?

Was that history permanently recorded?

Were they told that previous infection could become medically relevant again in particular circumstances?

And what happens today if somebody needs to prove an acute infection that occurred 40 or 50 years ago when the medical records that might have established it have disappeared?

We keep expecting victims to find the system

Perhaps this is the fundamental problem.

Today’s compensation system necessarily depends upon people coming through its door.

But somebody can only register a claim if they know there is a claim to register.

Someone can only investigate an old transfusion if they have a reason to suspect it matters.

And a family can only connect a parent’s or grandparent’s medical history with contaminated blood if somebody first gives them reason to make that connection.

The Infected Blood Inquiry was particularly critical of the historic approach to Hepatitis C lookback.

It concluded that the patient’s perspective — particularly their safety and autonomy — featured very little in the discussions.

Its conclusion was simple: people who had received infected blood had a right to know.

So who is looking for them now?

We hear constantly about how many people have registered.

How many claims have started.

How many offers have been made.

How many people have been paid.

Those statistics matter.

But perhaps there is another statistic we desperately need.

How many people should be in the system who aren’t?

How many former transfusion recipients remain unidentified?

How many people experienced acute Hepatitis B following NHS treatment without understanding its significance?

How many people died before anybody joined the dots?

How many families are sitting on medical histories that would look very different if somebody examined what happened in the 1970s, 1980s and early 1990s?

And most importantly:

What proactive effort is being made today to find them?

Because there is an enormous difference between saying:

“Nobody else has come forward.”

and being able to say:

“We went looking for everybody.”

The history uncovered by the Infected Blood Inquiry shows that Britain did not always do that.

Somewhere there may still be people who have never realised that the infected blood scandal happened to them.

The scandal isn’t finished if we still don’t know who all its victims were.

The Unheard Voice will continue examining international approaches to tracing, the claims made by Paul Desmond in When Spin Kills, historical estimates of infection in Britain, and what became of patients who were never identified through lookback.

— The Unheard Voice