Haemophilia Society Challenges IBCA as Community Frustration Grows

By The Unheard Voice

The infected blood community has heard repeated commitments to speed, fairness and transparency.

This week, the Haemophilia Society publicly challenged the Infected Blood Compensation Authority over the pace of compensation, evidential requirements and the difficulties faced by people trying to prove events that happened decades ago.

The intervention matters because it goes beyond frustration about waiting.

It raises a much harder question:

What happens when the evidence people are being asked to provide no longer exists?

The evidence problem

People infected through blood and blood products may now be trying to establish events that took place in the 1970s, 1980s or 1990s.

Records may be incomplete.

Some may have been destroyed.

Treatment may not have been recorded consistently.

And in some cases, the medical understanding and testing available at the time were very different from what exists today.

This problem has already been recognised by the Infected Blood Inquiry.

Sir Brian Langstaff addressed missing and sparse medical records in his July 2025 Additional Report on Compensation.

He warned that clinical evidence may need to inform a claim manager’s balance-of-probabilities assessment where records are incomplete, and raised concerns about the risk of people being denied compensation where historic evidence no longer exists.

That matters.

A compensation system dealing with events from decades ago cannot reasonably operate as though every claimant should possess a complete medical archive.

Where records are missing, the question cannot simply be:

“Where is the document?”

It must also be:

“What does all the available evidence show on the balance of probabilities?”

The Haemophilia Society raises the alarm

The Haemophilia Society has now brought those concerns directly to IBCA.

In its letter to Chief Executive David Foley, the Society raised concerns about the pace of compensation, evidential demands and the effect of the process on people who may already be elderly, seriously ill or dealing with decades of trauma.

It also questioned whether applicants are being required to provide evidence that may be impossible to obtain.

The Society has said that after two years of constructive engagement with IBCA, it believes a new approach is needed.

That is significant.

This is not simply criticism from frustrated individuals on social media.

It is a formal intervention from a major organisation representing people affected by bleeding disorders and the infected blood scandal.

What does IBCA’s own data show?

There has been real progress.

According to IBCA’s official Community Update published on 7 September 2026, as of 25 August:

6,321 people had been asked to start their claim.

5,785 people had started the claims process.

3,512 people had received compensation payments.

Just over £2.25 billion had been paid.

IBCA has also said its ambition is to bring 5,000 claims to decision between April 2026 and March 2027.

Those figures should be recognised.

Thousands of people have now received compensation and billions of pounds have been paid.

But the published figures do not answer every question being raised by the community.

They do not show how many individual claims are delayed while further historical evidence is being sought.

They do not show how long people typically spend at each stage of the process.

They do not explain why some applicants describe a relatively straightforward journey while others report repeated requests for further information.

And they do not tell us how many claims are affected by missing or destroyed records.

That gap between headline statistics and lived experience deserves examination.

Frustration across the community is becoming increasingly difficult to ignore

The Unheard Voice repeatedly hears from infected and affected people describing lives organised around waiting.

Waiting to enter the compensation service.

Waiting for records.

Waiting for probate.

Waiting for correspondence.

Waiting for decisions.

Waiting for the email that might finally tell them what happens next.

The following are composite statements reflecting recurring themes shared with The Unheard Voice. They are not verbatim quotations from individual members and should not be represented as such.

“Every morning I check my emails wondering whether today will finally be the day. You cannot plan anything because nobody can tell you whether you are waiting weeks, months or another year.”

“Families are being asked to find evidence from decades ago, but some of those records no longer exist. What happens when the document you need was never preserved?”

“We have already spent years trying to prove what happened. The compensation process should not leave people feeling as though they have to prove the entire scandal all over again.”

These statements do not suggest that every applicant has had the same experience.

They reflect recurring concerns reported to this publication.

That distinction matters.

IBCA says it is continuing to develop the service

IBCA says it is continuing to widen access to claims and prioritise particular groups.

Its September update says all living infected people registered with an existing support scheme have been invited to begin their claim.

It also says it has begun bringing in other priority groups, including certain people nearing end of life, people over 75, some people with advanced liver disease and those acting on behalf of deceased infected people.

There are genuine operational complexities involved in administering a compensation scheme of this scale.

That does not remove the need for scrutiny.

It makes transparency more important.

Monthly reporting — and the need for more detail

IBCA has recently changed the way it publishes compensation statistics.

Instead of reporting every two weeks, it is moving to monthly publication.

IBCA says it believes monthly reporting will provide a fuller picture of progress and that it is continuing to look at improving both the presentation and the amount of detail contained in its figures.

That creates an opportunity.

More detailed reporting could help answer some of the questions now being raised repeatedly across the community.

How many claims are waiting for medical evidence?

How many are delayed by missing records?

How many require additional identity verification?

How long are cases spending at different stages?

How often is a balance-of-probabilities assessment required?

These are not accusations.

They are reasonable questions about the administration of a compensation scheme created in response to one of the gravest failures in the history of the NHS.

Let us understand the process

The Unheard Voice would now like to make a constructive proposal to IBCA.

Allow independent community representatives to understand more clearly how the claims process operates.

Not individual claimants’ confidential information.

Not private medical records.

Not anything that would compromise data protection or the integrity of an individual case.

But, where legally and operationally possible, let us understand the process itself.

Show us how historical evidence is assessed.

Explain what happens when records are missing.

Explain when clinical advice is sought.

Explain what happens when a case cannot be resolved through straightforward documentary evidence.

Explain where responsibility lies with IBCA and where the Authority is constrained by the regulations governing the compensation scheme.

The Unheard Voice would welcome the opportunity to meet the relevant IBCA teams, examine the process at an appropriate level, ask difficult questions and report what we learn independently to the community.

If delays have legitimate operational explanations, let us understand them.

If legislation creates barriers, identify them.

If the community has misunderstood something, explain it clearly.

And if parts of the process genuinely are not working as intended, acknowledge that too.

This should not be about catching IBCA out.

It should be about reducing the gulf between institutional explanations and community experience.

Turn the lens around

For decades, infected and affected people have been asked for evidence.

They have handed over medical records.

They have given evidence to inquiries.

They have reconstructed family histories.

They have explained traumatic events repeatedly.

Now the compensation process itself deserves equivalent scrutiny.

The Haemophilia Society’s intervention adds another significant voice to concerns about the way compensation is being delivered.

Sir Brian Langstaff has already warned about the dangers created by missing evidence and the risk of repeating the mistakes of earlier decision-making bodies.

IBCA, meanwhile, says it is continuing to improve its service and intends to provide better detail in future reporting.

Those positions do not need to become opposing camps.

There is a constructive way forward:

greater visibility, better data and clearer explanations of how difficult claims are actually handled.

The community has spent decades showing institutions what happened to them.

Perhaps now it is time for the institutions administering compensation to show the community more clearly how the process works.

Right of reply

The Unheard Voice invites the Infected Blood Compensation Authority to respond to the concerns and questions raised in this article and to our proposal for greater transparency around the claims process.

Any substantive response received will be published or fairly reflected so readers can consider IBCA’s position alongside the concerns being raised.

— The Unheard Voice