The Invitation Lottery: When “Test and Learn” Becomes Wait and Grieve

The Infected Blood Compensation Authority says claims are being prioritised carefully. Across the infected blood community, however, many families describe something that feels very different: an invitation lottery.

Elderly people are still waiting. Some have never received an interim payment. Families acting for the estates of people who died without seeing justice are still waiting. At the same time, community members report seeing younger applicants invited ahead of older people whom they believed would be prioritised.

Those reports do not, by themselves, prove that IBCA has breached its stated approach. But they raise serious questions—and families deserve answers supported by transparent data, not another reassuring statement.

What is the actual order?

IBCA announced in December 2025 that people nearing the end of their lives would be prioritised first, followed by older age groups. It has also explained that not every claim within one group must be completed before claims from another group begin.

That may explain some invitations arriving outside a simple oldest-to-youngest order. It does not explain everything families say they are witnessing.

When community members question apparent inconsistencies, they are often told that IBCA is following age cohorts or that certain claims have entered the system as part of its continuing “test and learn” approach.

But these explanations create more questions:

- What are the precise age cohorts?

- How many invitations have been issued within each cohort?

- How many elderly applicants remain uninvited?

- How many of those waiting have received no interim payment?

- How many invitations have been issued outside the stated order?

- What criteria determine who is selected for “test and learn”?

- Who authorised those exceptions, and how is their fairness monitored?

- How are terminally ill people and recently bereaved families identified and prioritised?

Without the figures, families cannot tell whether the system is fair. They are simply being asked to trust another institution exercising enormous power over their lives.

Questions asked—but not answered

Representatives from several community groups report repeatedly asking IBCA how many people are waiting within each age cohort. They say these figures have either not been provided or that IBCA has indicated it cannot—or will not—release them.

If age cohorts genuinely determine the invitation order, the number of people within each cohort is essential information. Without it, nobody can understand the length of the queue, assess whether older applicants are being prioritised or hold IBCA accountable for its claims.

Community groups attend meetings, raise the same questions and are told that IBCA values openness and transparency. Yet, according to those attending, direct questions about cohort numbers repeatedly remain unanswered.

“Transparency cannot mean listening to a question without supplying the information needed to answer it.”

Nor should families have to rely on Facebook posts and informal comparisons to work out how a publicly funded compensation scheme is operating.

If IBCA believes it cannot publish these figures, it should explain precisely why. If it holds the figures and is choosing not to release them, it should explain how that refusal is compatible with its stated commitment to transparency.

No matter how many meetings are held, a question repeatedly avoided is still a question unanswered.

How long can “test and learn” remain an answer?

IBCA began inviting a small number of people to help test its service in 2024. In January 2025, it said it planned to invite approximately 250 people by the end of March while continuing to build the service.

Testing a new system is understandable. Nobody wants a compensation process that produces inaccurate decisions or causes further harm.

But “test and learn” cannot become an indefinite explanation for inconsistency, delay or a lack of transparency.

At what point does testing become the established system? How many families must pass through a process before the authority can clearly publish how invitations are selected? How long should elderly and bereaved applicants be expected to accept that someone else’s claim was needed for testing while theirs remained untouched?

This is not a technology trial involving anonymous data. It concerns real people whose lives have already been shaped by illness, stigma, financial loss, bereavement and decades of institutional delay.

Families are running out of time

Some people have died while waiting for compensation. Others have reached the end of their lives without receiving the recognition they were promised.

When that happens, the harm does not disappear. It is transferred to a grieving family, which must then deal with legal authority, estate administration, evidence gathering and a compensation process their loved one should have lived to complete.

Placing those families at the back of another queue is not a neutral administrative decision. It prolongs trauma.

The infected blood community has already endured decades of being told to wait: wait for records, wait for recognition, wait for the Inquiry, wait for regulations and now wait for an invitation.

Every delay has a human cost.

Reports from across the community

Members of infected blood Facebook groups regularly describe confusion over the invitation order. Some report elderly relatives still waiting while apparently younger applicants progress. Others say families who received no interim compensation remain without an invitation.

These accounts should not be treated as a substitute for verified national data. They should be treated as a reason for IBCA to publish that data.

If the apparent inconsistencies have legitimate explanations, transparency would allow IBCA to demonstrate them. If the system is not operating as described, transparency would allow it to be corrected.

Either way, silence and vague assurances are not enough.

What IBCA should publish

IBCA should provide a regularly updated breakdown showing:

- Invitations issued by claimant type and age cohort.

- The number still waiting in every cohort.

- The number waiting who received no interim payment.

- The number of estate claims invited and completed.

- The number of end-of-life cases prioritised.

- The number invited outside the ordinary sequence for testing or another exceptional reason.

- The written criteria governing every exception.

No names or personal information would be required. Aggregate figures would allow the community to understand whether the published priorities are being followed.

A scandal within the scandal?

Across community groups, people increasingly describe the compensation process as a “scandal within the scandal.”

That is a grave conclusion, but IBCA should not dismiss the anger behind it.

This scheme exists because institutions withheld truth, denied responsibility and forced victims and families to fight for decades. Its legitimacy therefore depends on more than eventually transferring money. It depends on fairness, compassion, consistency and openness.

Inviting people into meetings, listening to their concerns and publishing broad promises will mean little if families cannot see those promises reflected in practice.

IBCA should explain the invitation system in full. It should publish the evidence showing whether its priorities are being followed. And where the process has failed people, it should acknowledge and correct those failures.

Because for an elderly person, someone approaching the end of life or a family already grieving, an invitation is not simply an administrative milestone.

It may be their final opportunity to see justice done.

Editorial note: This article is evidence-led opinion and commentary, not legal advice. Community experiences mentioned above are reported accounts and have not all been independently verified. IBCA is invited to provide clarification, supporting figures or a response for publication.

Sources

IBCA: Payments to be scaled up in 2025

IBCA: More compensation claim invites sent out

IBCA: First claims for deceased infected and affected people

— The Unheard Voice