Correspondence

IBCA Community Update, 1 May 2025 (HTML)

Published 1 May 2025

Introduction

Hello, and welcome to this edition of the community update. In it we explain the latest on how we’ll continue opening our claims service for those who are infected and registered with an existing support scheme, provide an update on the compensation calculator for those who are affected, and answer some of your questions including from our recent webinar.

As always, please share any feedback with us by emailing ibcaenquiries@ibca.org.uk.

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Increasing the number of claims we support 

As of mid April, 475 people from those who are infected and registered with an existing support scheme were asked to start their claim. We also wrote to everyone registered with a support scheme during April to ask those who may be sadly nearing the end of their life to come forward and start their claim. This is for people who are infected and registered with a scheme who have been told by a medical professional that they may have 12 months or less to live. If this applies to you, or your circumstances have changed, please do get in touch.

As we continue paying compensation to this group, we are increasing numbers as quickly as we can. We asked 200 more people to claim during the week starting 21 April and intend to ask 200 more next week (the week starting 5 May). 

From then on, we’ll ask an average of 100 people to start their claims every week, and in some weeks this will be higher as more claim managers come on board. We will continue to randomly select claims from those who are already infected and registered with a support scheme, in addition to those who contact us if they are sadly nearing the end of their lives.

We’ve also heard from community members that not knowing when we send out emails and letters to ask you to start your claim can be frustrating. That’s why, when we are asking for large numbers of people to start their claim each week, we’ll send these out every Tuesday so it’s more predictable for you. We may still send a small number on other days too, so we’re not holding up any claims that can go sooner. You may receive this through phone, post or email, depending on your contact preferences with your support scheme.

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Our latest compensation figures

To make sure everyone can see a regular update on how we’re progressing, we’re moving to a fortnightly release of our latest compensation numbers on our website (this is currently published monthly). The next update will be on Tuesday 6 May.

Our numbers as of 24 April, which you can also find on our website, are:

• A total of 475 people have been asked to start their claim
• Of this number, 279 have started the claim process
• So far, 137 people have received a compensation offer
• The total value of offers made is £130,742,551.03
• A total of 77 people have had their compensation paid
• A total of £78,435,353.26 has been paid.

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Compensation calculator for those who are affected

We’re building a compensation calculator for affected people, and had hoped it would be ready to share with you by the end of April. Apologies that it’s taking a little longer as we work through the details of the second set of regulations. We also continue to test it with our claim managers and members of the community to make sure it works well for people’s needs. We’ll use this feedback to make further improvements to the calculator, and aim to publish it by the end of May.  

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Registered estates update

We’ve heard from a number of community members that our previous definition of ‘registered estates’ wasn’t clear enough and was too narrow. Although our service is not open for registered estates yet, people wanted more certainty about what registered estates means. Based on that feedback, we’ve made this clearer and expanded the definition to include more estates.  

Registered estates

We consider an infected person’s estate registered if: 

• they received one or more payments from an IBSS before they died
• their bereaved partner has received payments from an IBSS since they died
• their estate or their affected bereaved partner has received interim compensation from an IBSS since they died.

Once a person has started a claim and is registered with IBCA, we automatically consider their estate registered if they die. 

When a person’s estate is not considered registered

An infected person’s estate is not considered registered if:

• they were not registered with an Alliance House Organisation (AHO) or IBSS
• they were registered with an Alliance House Organisation (AHO) before their case was migrated to an IBSS, and their estate or bereaved partner has not yet received interim compensation.

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Our webinar on 15 April

We hosted our second community webinar on 15 April. More than 250 joined to hear our Chair, Sir Robert Francis KC, and IBCA directors answer your questions.

We hope to make each webinar better than the last one and have been listening to your feedback to help us achieve that. Thank you to those that have already let us know your thoughts; please keep telling us what you would like to see in future.

We plan to hold our next webinar at the start of June. We’ll ask you for your questions and provide more information about the session a bit nearer the time. 

Please have a look at the frequently asked questions below for some of the questions and themes raised in the webinar on 15 April. 

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Questions and answers 

How are claims randomly selected?

To make sure we are learning from a diverse range of cases as we continue expanding and developing our service, each claim is currently selected at random from across the following categories (within those who are infected and registered with one of the four support schemes). These are: 

• a range of age groups; 
• different types and severity of infection; 
• people who have more than one type of infection.

The only exception is for people identified as having less than 12 months to live, who are prioritised outside of this process (within the group that is currently able to start their claim).

You state that the affected claims will take until 2029 to pay, isn’t there discrimination for estates based on queue position? 

The timelines mentioned here are taken from the recently published framework between Cabinet Office and IBCA. The framework document sets out how the day-to-day relationship between IBCA and Cabinet Office works in practice, including timelines by which we must make compensation payments. We would like to reassure you that our aim is to make payments faster than this wherever possible. 

We have the medical documents you need, we’re ready to accept the compensation offered. Why can we not call you and have our claims processed? This would also allow IBCA to get claims out quicker? 

Around a quarter of the claims we have processed so far have all the information required straight away, including dates of infection. For many, we need to work further with the person making the claim to find all the required information. In the majority of cases we can do this for them, finding this information from other organisations.

We should not disadvantage someone who may, for whatever reason, have missing evidence. We continue to explore ways in which we can further speed up the process for all claims.

What happens to support payments if I die before reaching healthy life expectancy? Are they transferable to my estate? Or are they lost entirely? 

If a beneficiary dies before reaching their healthy life expectancy, their estate will not continue to receive support scheme payments. However, the compensation for future financial loss and future care costs—which reflects what they would have received in support scheme payments up to their healthy life expectancy—will become part of their estate. This amount will be offset by any support payments they have already received from the date of award onwards.

Is there a restriction on how much compensation is paid out each year based on the government’s last budget allocating £11.8 billion over this spending review period, and the Treasury rules currently in place to restrict annual spending?

These annual estimates of compensation are part of how the Government manages its plans for spending. There is no limit on the overall funding of the scheme. Everyone will get what they are entitled to under the regulations. 

How will you contact people who are infected and registered with a support scheme about claiming - do I need to register or should I wait to hear from you?

You do not need to register with IBCA, and we contacted all those registered with a support scheme in April so they know we have their contact details. We are working through claims now for those who are infected and registered with an existing support scheme. We’ll get in touch through your preferred contact method (usually phone, email or letter). For other groups, we will share more information in our community update about how the process will work when the claim service is open for you.

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Welsh language versions

If you, or someone you know, would like to receive future IBCA Community Updates in Welsh, you can let us know by calling 0141 726 2397 and signing up to our mailing list on our website: www.ibca.org.uk. 

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