You Keep Quoting Francis. So We Read Francis.

By The Unheard Voice

What was accepted, what was changed, who was consulted, and why do bereaved families still believe death is being treated as less?

A letter addressed to Andy Burnham was, we understand, recently handed to Baroness Twycross.

It carried questions from bereaved and affected families who remain deeply concerned about the way death, care, Hepatitis B and other harms are recognised within the Infected Blood Compensation Scheme.

The answers families repeatedly encounter return to familiar territory:

legislation;

the regulations;

expert advice;

Government policy;

and recommendations made by Sir Robert Francis KC.

But describing what the regulations currently say is not the same thing as answering whether the outcome is fair.

And if Sir Robert Francis is repeatedly relied upon as an authority for the present scheme, then his recommendations deserve to be examined in full.

Because the documentary record is more complicated than the phrase “this follows Francis” might suggest.

Francis did identify bereavement separately

In his original Compensation Framework Study, Sir Robert Francis proposed different categories of compensation for infected and affected people.

For affected people, those categories included:

injury impact, social impact, family care, bereavement and bereaved family financial loss.

That is not our interpretation.

Sir Robert later restated those original categories himself when commenting on the Government’s compensation proposals.

Bereavement therefore existed within his original framework as a distinct category.

The scheme that ultimately emerged does not reproduce that framework in precisely the same form.

That does not automatically mean the current scheme is unlawful or that Government was obliged to adopt every Francis recommendation unchanged.

But it creates a legitimate question:

When Government relies upon Sir Robert Francis to explain or defend the scheme, which of his recommendations were accepted, which were modified, and why?

Families deserve the complete answer.

Not selected references.

The complete policy trail.

The timeline deserves scrutiny

There is another important piece of history.

The Government’s original Expert Group was appointed in January 2024 to advise on compensation and assist officials designing the scheme.

The Infected Blood Inquiry published its final report on 20 May 2024.

The Government announced its proposed compensation scheme on 21 May 2024.

One day later.

That timeline does not prove that the Inquiry’s final report was ignored.

Nor does it prove that every element of the scheme had been permanently decided beforehand.

We should not claim either.

But it does justify asking a very serious question:

How much of the fundamental architecture of the compensation scheme was already settled before the Inquiry’s final findings were available?

And, critically:

What changed after those findings were published?

The community should be able to see that trail.

Which Inquiry findings altered the scheme?

Which Francis recommendations altered it?

Which objections from infected and affected people resulted in changes?

Which did not?

And why?

This question becomes even more important because the Government’s own Technical Expert Group subsequently acknowledged that the previous Expert Group had not had the benefit of direct engagement with the community.

That statement comes from Government’s own published record.

It should not simply be passed over.

There is an enormous difference between consulting people about a scheme after major elements have been designed and involving them meaningfully in its design.

Families are entitled to ask which happened, when it happened and what difference it actually made.

What does IBCA itself see?

This is where we want to be fair.

IBCA did not design the policy framework it is required to administer.

Those decisions ultimately sit with Government and the Cabinet Office.

We also understand that IBCA may not always be in a position to publicly criticise the regulations it has been tasked with delivering.

That would place it in a difficult position.

But IBCA is made up of people.

People who speak directly to bereaved families.

People who hear the distress.

People who see the practical problems around estates, medical evidence, care and recognition.

People who must, at times, encounter outcomes that are difficult to explain to the families affected by them.

So perhaps the question is not whether IBCA can publicly challenge Government policy.

Perhaps it is simply this:

Do the people inside IBCA see some of what the community sees?

Do they recognise where families feel the scheme is producing unfair or painful outcomes?

Do they understand why death recognition remains such a profound issue?

Do they see the anxiety around Hepatitis B?

The arguments around care?

The distress caused by evidence disputes, probate barriers and long waits?

We hope they do.

And where IBCA is able to feed those concerns back to the Cabinet Office, we hope it is doing so.

We are not asking IBCA to step outside its role.

We are not asking its staff to take sides.

We are simply asking whether the human beings administering this scheme can see the human consequences of the rules they have been given.

Because even where an organisation cannot change policy itself, recognising where policy is hurting people still matters.

And on the issue of deceased infected people, we already know concerns have reached Government.

The Cabinet Office’s April–June 2026 quarterly feedback report confirms that concerns about compensation for deceased infected people were considered, and that the Senior Responsible Owner decided not to recommend a change to the scheme in that area.

That matters.

So the question is no longer simply whether Government has heard the concern.

It has.

The question now is:

Why, having heard it, does Government believe the current position remains fair?

And separately, through administering real claims, has IBCA itself identified further concerns about the consequences of that policy?

Have those concerns been escalated?

Has anything IBCA has seen in practice caused it to recommend reconsideration?

We are not asking for confidential case details.

We are asking whether the experience of delivering the scheme is producing evidence that should inform its future review.

Because if Government wants communities to believe their voices are being heard, it is not enough to confirm that a concern was received.

Families need to understand what happened to it.

What evidence was considered?

Why was change rejected?

And what would need to be shown for that decision to be revisited?

That is the level of transparency this community deserves.

Hepatitis B: a question that deserves an answer

Hepatitis B is recognised within the compensation scheme.

Chronic Hepatitis B and chronic Hepatitis C sit together within a number of severity bands.

But acute infection is treated differently.

The current scheme contains a Level 1 category for acute Hepatitis C.

Acute Hepatitis B appears as Level 5 where the infection resulted in death from acute liver failure within 12 months of infection or reactivation.

Those are the current rules.

But stating the rules does not resolve the policy question.

Families continue to ask whether the complete impact and history of Hepatitis B has been adequately recognised.

That question should be answered with evidence.

Not dismissed simply because a tariff table exists.

Government should explain clearly the medical evidence relied upon when constructing these distinctions and how that evidence has evolved as the scheme has been reviewed.

The community should also be able to challenge that evidence with credible contrary medical evidence where it exists.

Hepatitis B can result in serious liver disease.

The scheme itself recognises advanced Hepatitis B including cirrhosis, decompensated cirrhosis, liver cancer and fatal acute infection.

So asking whether every part of the Hepatitis B framework properly reflects the experience of those infected is entirely legitimate.

Interferon demonstrates why scrutiny matters

Interferon is a useful example of why medical and policy decisions must remain open to examination.

The compensation arrangements have already changed.

Government has introduced a new Level 2B category for people with chronic Hepatitis B or C who were treated with interferon.

The Technical Expert Group concluded that care needs during interferon treatment were likely to have been inadequately compensated under the previous core scheme.

That is important.

It shows that challenging the original framework does not mean rejecting medical expertise.

It means allowing evidence to develop.

Evidence changes.

Clinical understanding develops.

People with lived experience identify consequences that may not have been properly reflected in an original model.

Expert groups reconsider evidence.

Government changes policy.

That is how a functioning compensation scheme should work.

So we will not describe Government’s medical experts as “debunked”.

That would go further than the evidence supports.

But neither should expert advice be presented as if it closes every argument permanently.

The history of the interferon award itself demonstrates otherwise.

The compensation process must not become another source of harm

There is another issue that cannot be reduced to a tariff.

Families repeatedly tell us that dealing with the compensation process is worsening their distress.

For some, claims require them to return to events they have spent decades trying to live with:

illness;

death;

hospital admissions;

caregiving;

lost work;

family breakdown;

medical records;

and years in which the truth was not known.

We must be precise here.

The Unheard Voice cannot diagnose psychological injury, and we cannot claim that the compensation scheme is medically responsible for every person’s mental health difficulties.

But we can report what families are telling us.

And what many are telling us is that this process is causing profound distress.

That should matter.

A compensation scheme created following findings of catastrophic institutional failure should be designed and delivered with particular care toward traumatised people.

Government should be asking continually whether avoidable aspects of the process are compounding that distress.

If they are, those processes should be examined.

The dead cannot attend another consultation

This remains the issue Government appears least able to resolve to the satisfaction of many bereaved families.

Thousands died before compensation arrived.

They cannot attend another roundtable.

They cannot answer another consultation.

They cannot explain the careers they lost.

They cannot describe the stigma.

They cannot describe the treatments.

They cannot describe the fear.

They cannot challenge a compensation calculation.

Their families are left to do it.

And those families are not asking for the dead to be treated as inherently more valuable than people who survived.

That distinction matters.

The argument is not:

death should automatically mean more money than survival.

The argument is:

death should not result in diminished recognition simply because the person did not survive long enough to claim for themselves.

Families want to understand how the scheme accounts for the ultimate outcome of an infection that contributed to someone’s death.

And why, despite Sir Robert Francis originally identifying bereavement separately within his framework for affected people, Government ultimately chose the structure that now exists.

That question remains unanswered to the satisfaction of many families.

Government cannot answer questions about justice simply by reciting legislation

This distinction sits at the centre of everything.

Legislation tells us what the scheme currently does.

It does not, by itself, prove that every outcome produced by that legislation is fair.

Regulations can be amended.

Policies can be reconsidered.

Expert advice can be revisited.

Government decisions can be challenged.

Indeed, parts of this compensation scheme have already changed.

That is why responding to concerns simply by explaining the current rule does not settle the underlying argument about whether the rule should remain.

Publish the trail

So here is what we are asking Government for.

Show the community the decision-making trail.

Show which Francis recommendations were adopted.

Show which were altered.

Show which Inquiry recommendations changed the scheme.

Show when those changes were made.

Show how bereaved families were represented.

Show what concerns were raised.

Show what Government accepted.

Show what it rejected.

And explain why.

When IBCA escalates recurring concerns, show us what happens to them.

When medical evidence develops, show us how it is reconsidered.

When consultation changes policy, show us the change.

That is how trust is rebuilt.

Not through another assurance that people have been listened to.

Through evidence that listening produced consequences.

We will keep asking

The Unheard Voice is not alleging a secret conspiracy behind the compensation scheme.

We do not need to.

The published record already gives the community legitimate questions to pursue.

We will read Francis.

We will read Langstaff.

We will read the regulations.

We will read the expert reports.

We will examine the consultation records.

We will compare what was recommended with what was ultimately implemented.

And where those things differ, we will ask why.

We will challenge medical assumptions with evidence where evidence exists.

We will ask who was consulted.

And we will continue asking who was absent from the room.

Most importantly, we will continue asking how this country intends properly to recognise those who died before justice arrived.

They are not asking for more because they died.

Their families are asking that death does not make them worth less.

More than three thousand people died in connection with this scandal.

They cannot interrogate the compensation scheme themselves.

Their families can.

And until they believe death has been properly recognised, this argument will continue.

We are not accepting mediocre recognition for our dead.

Not because we reject evidence.

Because we intend to keep reading it.

— The Unheard Voice