When the Compensation Process Becomes Part of the Harm

By The Unheard Voice

That should stop everyone involved in this process in their tracks.

This is no longer only a discussion about tariffs, claim numbers, invitations or processing times.

It is about what prolonged uncertainty, grief, perceived unfairness and repeated disappointment are doing to real people.

Imagine losing somebody you love.

Twenty years pass.

You learn that, finally, there may be recognition for what happened to them and what happened to your family.

Hope returns.

Then you wait.

You check your email every morning.

You check it again at lunchtime.

You wonder whether today will be the day your invitation arrives.

Monday becomes Friday. Another week disappears. Then another month.

Every unfamiliar email notification makes your stomach turn.

Every announcement that another group of claims has progressed leaves you wondering where you are.

And eventually, the question changes from:

“When will they contact me?”

to:

“Do they even care what this is doing to me?”

When waiting becomes dangerous

Across the community, people are talking increasingly openly about the effect this process is having on their mental health.

Some describe anxiety.

Some describe depression.

Some say they are no longer sleeping properly.

Some cannot stop checking their emails.

Others say they feel consumed by their claim.

Most seriously, we are hearing from people whose distress has reached the point where they have spoken about ending their lives.

There can be no acceptable compensation outcome that makes that collateral damage worthwhile.

A payment cannot undo a suicide.

A completed claim cannot comfort a family left asking why somebody seeking justice was pushed into such despair along the way.

If a compensation process established to recognise harm begins contributing to further serious psychological harm, that must be treated as an urgent safeguarding issue — not merely as poor customer service.

One sibling’s reality

Earlier in this article, we asked readers to imagine what it might feel like for a brother or sister to watch somebody who never knew the deceased potentially become central to the administration of that person’s estate.

For one family, this is not hypothetical.

Nicky, whose brother died decades ago, described the impact:

“The compensation process is having a serious mental health impact on families like mine. My brother died decades ago. Since then, our divorced parents remarried and have also died. Now the siblings who actually knew him, lived through his illness and experienced his loss are facing a competing route to the grant through the family of a later spouse who never knew my brother.

Our route through probate is significantly more complicated. We have spent around a year, as well as substantial sums of money, gathering evidence and trying to establish an overseas inheritance position dating back decades. Delays and misunderstandings at the Probate Registry have made that even harder.

What frightens us is that the easier route could ultimately prevail simply because ours takes longer and costs more to prove. We are not saying that we have already been excluded; we are saying that the possibility of exclusion is very real.

More important than the money is making sure my brother receives full recognition and justice. We hold his memories, his records and the knowledge of what happened to him. If somebody else ultimately administers his estate, we need meaningful involvement throughout the compensation claim. We need to know what evidence has been considered, what may have been missed and whether an assessment properly reflects his life and suffering before any offer is accepted.

It is incredibly painful to imagine the most intimate details of my brother’s illnesses and life being discussed with somebody who never knew him, potentially while the siblings who actually lived through those years are outside the conversation. His records may also contain deeply personal information about the rest of our family. He would never have imagined strangers discussing those parts of his life while his own brother and sisters struggled to have a voice.

The strain this has caused has been extreme. Several times during this process, we have reached the point of considering ending our lives. Those of us who lived through my brother’s illness and death are dealing with severe PTSD, and even seeing an email from the Probate Registry can now be excruciating.

A scheme created to address historic harm must not expose bereaved families to further psychological harm. To have to fight for the opportunity to secure full recognition for someone you loved, while fearing that you could ultimately be left outside the room where his illnesses, his life and his compensation are discussed, feels abhorrent and beyond cruel.”

Behind complicated language about grants, probate and personal representatives are real brothers and sisters trying to protect the story of somebody they knew and loved.

That distinction matters.

Because this is not simply about who receives money.

It is about who gets to speak for the dead.

Who holds the records.

Who knows the history.

Who remembers the hospital stays.

Who understands the suffering.

And who may ultimately be sitting outside the room while somebody else discusses it.

Hope can become its own form of torment

Many families waited decades to hear that justice was coming.

An inquiry gave them hope.

Government announcements gave them hope.

The creation of a compensation scheme gave them hope.

Then came another wait.

And another.

People who had tried for years to get on with their lives suddenly found themselves pulled back into medical histories, death certificates, family relationships and memories they had worked hard to live alongside.

Hope was reopened.

So was grief.

When somebody is repeatedly told that progress is coming but cannot see where they stand, hope itself can become exhausting.

People begin questioning everything.

Have I been forgotten?

Does my loss count?

Was I wrong to believe them?

Why is somebody else’s relationship being recognised while mine appears invisible?

Why are we being made to relive all of this?

And then there are the family injustices

Some of the most distressing stories are not simply about waiting.

They are about who the scheme appears to recognise.

Imagine losing your brother.

You knew him as a child.

You grew up together.

You remember him before he became ill.

You watched what infected blood did to him.

You remember the fear, the hospital appointments, the family upheaval and, eventually, the loss.

You carried that grief for decades.

Then imagine watching a man who never knew your deceased brother potentially receive an enormous compensation award because of a later marital relationship within the family.

Community members have described situations they believe could result in awards approaching £2 million.

Think about what that feels like for the surviving sibling.

Some might call it eligibility.

Some might call it the rules.

To the brother or sister watching from the outside, it can feel as though somebody has won a marital lottery based on the death of a person they never even met.

Meanwhile, the sibling who knew them, loved them, grew up beside them and lived through the consequences may receive little or no comparable recognition.

That is not simply a financial disagreement.

It can turn families upside down.

It can reopen grief.

It can create anger between relatives who previously had no dispute.

It can leave surviving siblings questioning whether their relationship with the person who died has somehow been judged less important than a legal relationship created afterwards.

And it can cause profound psychological distress.

The pressure does not stop with the claimant

The emotional burden can also fall heavily on sons, daughters and other relatives trying to support elderly beneficiaries through the process.

One son described the reality of carrying that pressure for an older family member:

“I am helping an elderly beneficiary through this process, and the psychological pressure affects far more than the person whose name appears on the claim.

I check the emails, follow the correspondence, try to understand what is happening and deal with the uncertainty, while also trying to protect an elderly person from carrying all of that anxiety themselves.

At their age, time matters. Every additional month of waiting raises the same frightening question: will they actually live long enough to see the recognition and compensation they have waited decades for?

That is a horrible thought for any son to carry.

What may appear administratively to be another delay can feel very different inside a family. You watch somebody who has already lived through years of loss and injustice becoming anxious every time another email arrives, or disappointed when another week passes without progress.

This compensation was supposed to bring recognition and some measure of peace. Families should not be spending these precious years frightened that justice may arrive too late.

When you are supporting an elderly beneficiary, you are not counting processing days. You are counting time you may not have.”

That final point matters.

A delay measured internally in weeks or months can feel completely different to an elderly beneficiary and the family supporting them.

They are not looking at a processing target.

They are looking at a parent, grandparent or relative whose time is finite.

For them, every month matters.

Imagine watching the money become more important than the person

There is something deeply unsettling about a bereaved sibling feeling they are watching another person fight intensely for compensation connected to somebody they never knew.

The deceased risks becoming a route to an award rather than the human being at the centre of the story.

For the surviving family, that can feel unbearable.

They remember the voice.

The childhood.

The illness.

The funeral.

The empty chair.

The birthdays that stopped.

Then, decades later, they are forced to watch arguments about who qualifies financially because that person died.

No scheme should underestimate what that can do to somebody.

No spreadsheet captures it.

No tariff explains it.

And no official letter makes the emotional contradiction disappear.

Staff holidays are normal. Claims disappearing into silence should not be.

Another concern repeatedly raised is continuity during an active claim.

Of course, claim managers are entitled to annual leave, weekends and time away from work.

Nobody disputes that.

But a psychologically safe system must have cover.

If somebody has spent weeks recounting deeply traumatic events, submitting private medical information and reliving the death of a loved one, their case should not suddenly appear to fall silent because the person handling it is away.

A simple handover matters.

An update matters.

A message explaining what will happen next matters.

For a claimant in significant psychological distress, unexplained silence can feel much larger than an administrative delay.

Trauma-informed cannot simply be a phrase

A genuinely trauma-informed compensation scheme would recognise that uncertainty itself can cause harm.

It would identify claimants who are struggling.

It would have clear safeguarding routes.

It would ensure continuity when staff are unavailable.

It would communicate even when there has been no major development.

It would avoid forcing grieving families into unnecessary conflict.

And policymakers would urgently examine eligibility rules producing outcomes that appear incomprehensible or cruel to the people most directly affected.

Because grief does not fit neatly into statutory definitions.

A sibling does not stop being a sibling because legislation gives another relationship priority.

A child does not stop being harmed because they became an adult before their parent died.

And somebody does not stop carrying trauma simply because forty years have passed.

We will be asking IBCA to respond

The Unheard Voice will be contacting IBCA directly about the concerns raised in this article.

We will be asking what safeguarding measures are in place for claimants and bereaved families experiencing severe psychological distress, how continuity is maintained when claim managers are unavailable, and what steps are being taken to prevent prolonged uncertainty from causing further harm.

We will also ask how IBCA ensures that families with direct knowledge of a deceased person’s life and medical history are meaningfully involved where probate arrangements are complex, and how elderly beneficiaries are being protected from delays that may have a very different impact on them because of age and time.

These are not abstract policy questions.

They are questions arising from the lived experiences of families going through the process now.

We will publish any substantive response we receive.

No compensation payment is worth another death

That needs saying without qualification.

If even one person is reaching the point where they believe death is easier than continuing through this process, the response cannot be:

“Your claim is progressing.”

The response must be:

“Why has this person been allowed to reach this point, and what are we changing immediately?”

The infected blood scandal has already taken far too many lives.

Its compensation process must never become another source of unbearable harm.

Justice should provide recognition.

It should provide security.

It should help people begin to close a chapter that has dominated generations of family life.

It should not leave people staring at an inbox, fighting relatives, questioning their worth or wondering whether they can continue living.

Because behind every claim number is a human being.

Behind every estate is somebody who died.

Behind every eligibility decision is a family relationship.

And behind every delay may be a person struggling far more than officials can see.

Nobody should be psychologically damaged while waiting for acknowledgement of psychological damage.

And nobody should lose their life waiting for compensation intended to recognise the lives already destroyed.

— The Unheard Voice