Correspondence

IBCA Community Update, 10 February 2025

Published 10 February 2025

Hello,

Welcome to your community update. In this edition, we cover:

• Opening up to more claims
• How we’ll expand the claim service through 2025
• Update on our compensation calculator.

We are also expecting the 2025 regulations about infected blood to be published very soon. These regulations include the approach to how affected people will be paid compensation. They also include how the Supplementary Routes (such as unethical research and severe health conditions) will work. 

We will review the new regulations to understand what they mean for people making a claim and how we can bring those included in our compensation service. We’ll say more about this in our next community update in early March.

If you have any feedback or questions please contact us by emailing ibcaenquiries@ibca.org.uk.

Claims started so far 

By mid-January, 67 people had been asked to start their claim, and more people are being asked to claim each week. As we continue to increase the number of claims our service can work through, we are regularly inviting people to start their claim.

We are still on track for 250 people to start their claim by the end of March, helping us design and test the service as we build it.

As a reminder, for the first 250 claims, we are inviting living infected people who are registered with an existing support scheme.

How we’ll expand our service in 2025

This year, we’ll continue to build the claim service so it can process every type of compensation claim. 

• We need to build and open the service in stages to make sure it is effective and secure for all those claiming.
• We will also accelerate the number of claims we are starting for those who are infected and already registered with a support scheme.
• Different groups of people will be able to start their claims at each stage.
• We have spoken to community representatives for views on which groups start their claims in which order.

What’s happening

We know that each and every person who’s entitled to compensation is unique, with their own personal circumstances. We need to make sure our service works for everyone, and that we balance this with the need to open our service to more people. 

After the first 250 people have started their claims, we plan to open the service more widely. We need to do this in stages to make sure it is effective and secure for everyone. We will also accelerate the number of claims we’re starting for those who are infected and already registered with a support scheme.

Opening the service in stages to different groups of people means we can make sure that we provide the right service for each person making their claim. 

We asked community members and their representatives for their views on how we should plan which groups of people start their claim in which order during 2025. We’ve taken their views on board wherever possible and have also looked at feedback received by email, letters, calls and social media. 

This is about designing and building a claim service that can handle all types of claims. It doesn’t mean all claims in each group have to be finished before developing and opening the service for the next group. We need to develop the service in stages, as we won’t be able to support all types of claims straight away. We’ll keep testing and developing the service, with more people starting their claim as we go, and widening out to more groups as soon as we can.

Views from the community

Understandably, there wasn’t a clear agreement among those we talked to about who should be able to start their claim first. Everyone’s circumstances are so different, and we know some people found the conversations very difficult and described it as an impossible task for IBCA. We are grateful to everyone for their feedback. 

Most people we spoke to said that those nearing the end of their life because of illness should be paid first. Some people felt those with the most severe illness, or older people, should be able to start their claim as soon as possible.

People also told us they thought living infected people should be the first to claim because in many cases they have lived with disease and illness for such a long time. Some also said we should consider those who haven’t received any financial support whatsoever yet to start their claim. This would include those not yet eligible or registered with a support scheme.

We also heard that estate claims should be considered early to recognise the length of time that many people have suffered.

For affected people, we heard that many families have waited too long for recognition and that in many cases they have received no interim compensation. People also raised the importance of paying compensation before eligible people died. We are very conscious that if eligible affected people die, their estate will not be entitled to any compensation. 

It is clear from the community engagement that there is no right decision for how we expand, but to start expanding the claim service further we must make a choice now. 

On 21 January, the Board agreed on an interim approach to allow us to begin processing as many claims as possible over the next year.

The stages when groups will be able to start their claim

Our plan is for the claim service to open in stages. We will let everyone know when this is happening through future community update emails. The stages and order we’ll work through as we build the claim service will be:

• Living infected people who are already registered with a support scheme. This is because we can already access their details through the existing support schemes, and know they are already eligible for compensation. We have already started making payments to this group and will increase the number of claims in this group through 2025.
• Supplementary claims. When the second regulations pass through Parliament we will - in law - be permitted to process these claims. People have told us that they want to settle their whole claim as quickly as possible, so when we have the new regulations in place we want to support people with this. We will need to work through and test how we will process supplementary claims, because the type of evidence people will need may be more complicated. But we’ll aim to do this as soon as possible so that we can process both a core and supplementary claim at the same time. 
• Registered estates. Those claiming on behalf of registered estates (where the estate has received an interim payment from a support scheme) have already met the eligibility requirements of their support schemes, so we can access and check this data. Paying one estate claim will often result in money reaching multiple people through the processing of a single claim, which could include both affected and infected people.
• People who are affected and linked to a registered infected person or registered estate. If an affected person dies before their claim is paid, then their own claim will not be paid to their estate. Community members told us it was important to make that clear. The eligibility of an affected person is determined by their relationship to an infected person. Therefore, if an infected person (or estate) is registered, then we know the affected people linked to that person are likely to be eligible for compensation.
• People who are infected but not registered with a support scheme (unregistered infected). This could include people who are eligible for IBCA compensation but are not currently able to claim from a support scheme. We know it may take longer to work through unregistered claims because eligibility hasn’t been determined yet. It’s likely these claims will be more complex.
• Personal representatives applying on behalf of an estate that is not registered with a support scheme and people who are affected and not linked to a registered claim. As with unregistered infected people, we know it may take longer to work through unregistered estate claims and eligibility will need to be determined.

In the meantime, bereaved partners registered with an Infected Blood Support Scheme (IBSS) will continue to receive support payments for life. If preferred, an IBSS beneficiary may choose not to continue to receive support payments. Instead, they can receive their future Financial Loss and Care award as part of their total compensation package under the Core Route, in the same way as someone who is not an IBSS beneficiary. We recognise that only a minority of affected people receive support payments.

For all groups, we are exploring if those who are nearing the end of their life due to illness can be identified first when we are open to claims from their relevant group. 

In addition, we will develop the ability for another person to help with a claim, if the infected or affected person, or personal representative, wants them to (sometimes known as a ‘proxy’). This includes formal proxies (for example those with lasting power of attorney) and consideration of informal proxies (for example a family member who is best placed to assist with the claim).

Timings

Some people from all groups will be able to claim in 2025, although not all claims from all groups will be completed by then. By developing and testing at each stage, some people from each group should have received their payments by the end of the year.

What happens next

We will keep you updated as we design the claim service, and as more groups start their compensation claims.

Update on our compensation calculator

In February, we’ll ask people who’ve already started their claim to test the new calculator we’re building. The calculator will help people to understand what compensation they may be eligible for. To start with, it will be for those who are infected or claiming on behalf of an estate. We’ll develop the calculator further for those who are affected after the second set of regulations has gone through Parliament. 

Calculations will be based on the information you provide, and may not reflect the actual amount of your full claim if information changes.

Welsh language versions

If you, or someone you know, would like to receive the next and future IBCA Community Updates in Welsh, you can either let us know by signing up to our mailing list or emailing ibcaenquiries@ibca.org.uk.

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